Ignorant quetion, and not sure how to put this tactfully, but why do people not want to have a baby with DS?

(386 Posts)
LesAnimaux Sun 10-Apr-11 20:59:55

I don't want to offend, or be flamed, but I am curious.

I've seen several threads where posters have terminated a pregnancy when they have found out their baby has Down Syndrome, and then gone on to ttc a "normal" baby.

Now, I don't personally know any one with DS or any parents of children with DS, so I genuinely don't know the difficulties they face. Is life with downs syndrome really so bad? Or is it the thought of a child growing into an adult with SN and having no one to care for them when the parents are no longer capable?

Out of all the things I worried about when pregnant, downs syndrome wasn't one of them.

maddy68 Sun 10-Apr-11 21:02:55

because they have concerns for the childs future, who will are for it when they are gone if they cannot live independently, etc etc.
many reasons

HecateQueenOfTheNight Sun 10-Apr-11 21:06:36

I don't know. Ignorance? Fear? Wanting a Perfect Baby and thinking disability means not perfect?

I think that, as with other conditions, people who have downs syndrome are individual and as such, each has a different potential and a different life, so you can't possibly know what difficulties an individual with ds will face. I mean, there are people with ds who require full time care and there are people with ds who are actors! so <shrug> who can know?

When you think of all the conditions that you can't test for, or all the things that can happen to a child after birth that may result in a disability, then it seems silly to me to even bother about ds. Unless you would give up a child that had a disability come to light after birth of course.

I dunno. I'm probably the wrong person to be answering grin because I don't understand at all why anyone would go to such lengths because of a mere disability.

EllAEllO Sun 10-Apr-11 21:08:43

I don't know either.

But I thought this thread was a mother wanting to know why no-one would let her son impregnate them. shock grin

EllAEllO Sun 10-Apr-11 21:09:23

Sorry, that was a bit flippant.

Don't mean to make light.

collision Sun 10-Apr-11 21:09:33

I think that as a parent you have hopes and dreams for you children and presume they will be 'normal' and healthy and you will prepare them for life in the big bad world!

When you have a child with DS then you must worry about what they can achieve and who will care for them and that life will be so much more difficult for them.

I have no exp of DS either but would never have terminated a pregnancy anyway and am grateful to have 2 healthy boys.

I suppose you just expect everything to be OK........

expatinscotland Sun 10-Apr-11 21:11:05

What hec said. I think it's because DS is one of those conditions that can be pinpointed before birth - as opposed to my depression which developed later and life and almost completely destroyed it and me, or the car that drove into a 19-year-old friend of mine 27 years ago that left him with the mental capabilities of a 4-year-old, or the schizophrenia a friend from high school developed in our last year, when we were 18, and she is now 40, in terrible health and unable to live independently.

I guess I was never one to expect guarantees in life so, like hec, I'm the wrong person to ask.

StealthyKissBeartrayal Sun 10-Apr-11 21:12:32

fear and ignorance, fear of the unknown
Knowledge that the plans you had now have to be altered drastically
For me (and again this may be ignorance) I think lots of babies with DS also have heart problems - is that right??? SO stress of that.
That said, I wouldn't have terminated for DS, and didn't have the tests.

I did too EllAEllo! shock

DH and I have always said we wouldn't care either way if we had a baby with Downs--of course, we are in our mid twenties and our chance with DD was something like 1 in 4000 so we're pretty "safe", which might account for our blase attitude.
My mum on the other hand who is in her early 50s believes that it is better for babies to be misscarried than be born disabled. sad I guess its very personal.

FanjOeuForTheMammaries Sun 10-Apr-11 21:14:32

Collision - my DD has a chromosome disorder and I wouldn't say she was 'abnormal' or 'unhealthy', not the best choice of words there

PonceyMcPonce Sun 10-Apr-11 21:14:39

I did not have any invasive tests for ds as we knew it would not affect outcome.

At 41, my big fear would be dying and leaving a child who still needed me. I am old enough to remember when people with ds did not make old bones often due to heart probs, so think this fear is fairly new.

FanjOeuForTheMammaries Sun 10-Apr-11 21:16:39

Littlewhitewolf, your mum needs to meet my DD- the happiest child I ever met.

FanjOeuForTheMammaries Sun 10-Apr-11 21:18:18

Probably this is not the thread for me, will end in people saying children like my DD are inferior and undesirable <steps away>

StarExpat Sun 10-Apr-11 21:18:56

So did I, Ellaello blush
But that's what the title implies!

On a serious note, I personally wouldn't terminate, but it's a very personal decision that an individual/ couple has to make and I don't think I could possibly be right to judge anyone else's decision to do so. Everyone has their own reasons for their own choices.

I would worry that it would affect the quality of my DDs life to be perfectly honest, having another child you know is going to be ill. It's not the Downs Syndrome, as such, it's the risks that come with it. The heart problems, the fact that if I died young, the responsibility of caring for her sibling would fall on DD.

I think you don't know how you are going to react in that situation until you actually face it, and I imagine it must be heartbreaking to terminate a wanted pregnancy, if you feel you couldn't cope with knowingly bringing a disabled child into this world.

collision Sun 10-Apr-11 21:19:42

That is why I never post on threads like this as I hate saying the wrong thing and that is why I put 'normal' in inverted commas.

sorry if I offended

will leave thread............

FanjOeuForTheMammaries Sun 10-Apr-11 21:22:35

Collision, I know you didn't mean it . I just wish people would think deeply before posting/posting on threads like this.

FanjOeuForTheMammaries Sun 10-Apr-11 21:23:11

Now I really will step away..

fortyplus Sun 10-Apr-11 21:23:54

DS babies do often have other health problems too - hole in the heart etc and weak smooth muscle so circulatory and respiratory problems are common. However it's all so variable. I remember a few years ago the first DS student graduated but in my limited experience I've helped care for ds girls with apalling problems. Once puberty kicked in things became nightmarish for the parents.

I suppose parents fear for the future of a child who couldn't look after themselves or make a living for themselves?

Would the parent who would terminate a ds pregnancy do the same with - just as an example - an otherwise normal baby with a physical problem such as a limb deformity? I guess everyone is different.

With my first pregnancy I had no diagnostic tests and accepted that I'd love whatever baby I had whether 'perfect' or not. When I was pg for the 2nd time I did have tests because I didn't want ds1 to go through life in a family with restrictions placed upon it by caring for a chid with abnormalities. Having said that, of course children can be damaged at birth and we would have loved any child equally.

FanjOeuForTheMammaries Sun 10-Apr-11 21:25:20

Just remember, would you all like a thread listing reasons why people didnt want a child like yours? Nice..

computermouse Sun 10-Apr-11 21:25:20

Message withdrawn at poster's request.

Thing is - if you are worried about leaving your children with a sibling to care for then nobody should have more than one child because cerebal palsy at birth can and does happen to anyone.
The presence of people with Down Syndrome in our soiety is being removed by the testing programme. I know of two children born with it - their parents did not have tests. As the number dwindles then people will become more and more afraid of the syndrome. At the same time though the treatments for the particular problems the syndrome carries such as heart defects are improving. Ironic that - science could keep those people alive for much longer but is also used to identify and remove them.
I have three children. All NT at the moment and of course I hope they stay that way. Nothing is guaranteed though and if you want to be a parent you have to take that risk.

StealthyKissBeartrayal Sun 10-Apr-11 21:28:09

"The presence of people with Down Syndrome in our soiety is being removed by the testing programme."
That's quite an unpleasant thought

naturalbaby Sun 10-Apr-11 21:30:57

I worked with disabled children before I got pregnant so to be offered a test for DS seemed a bit pointless when I was well aware that there are so many other disorders, illnesses and conditions which babies can be born with or even develop during childbirth. At the time DS was the least of my worries seing the severe disabilities other children had which were more life limiting. A lot of them only developed post birth so even now I know that just because all my children are healthy it doesn't mean they will always be. sad

SanctiMoanyArse Sun 10-Apr-11 21:31:33

I think a lot of it is due to exposure.

I knew people with Sn as a child, a close mate was blind and had what I am fairly sure were asd behaviours (brother of a mate, in that all-estate-kids together kind of way mate- a good, close way). We lost a cousin to leukemia, by 16 I was helping in an SNU so whilst it was a shcok to be told ds3 was high risk for DS it didn't take me into any scary unknown: i've seen people with ds achieve and i've been lucky to 1-1 a great bloke who needed 24/7 care but certainly added to other's lives and enjoyed his own.

DS3 didn;t ahve DS but he has a non testable SN and I am fairly sure that I managed to do the whole SNU / dx thing far more coherently than DH because of my own life; DH OTOH was raised that people with Sn should be hidden away. he struggled a lot.

Now I am not saying that everyone should have a baby with an SN; it ahs to be individual even if I wouldn't make the choice- but I do think if people were exposed to more variance in life a lot of things, not just Sn, would be a lot easier to handle.

Of all the reasons the only one that strikes much resonance with me (as opposed to sympathy) is the one about affecting siblings. I cannot honestly say ds2 hasn;t been affected by his 3 sn siblings (maybe 3, we will see after assessment about ds4) although I hope as an adult he will still be glad of his brothers.

Stealthykiss - yes it is. But that is what's happening. Testing provides information - but as you can see from many posts on many threads it comes with an expectation that termination will then also be part of the conversation.

StealthyKissBeartrayal Sun 10-Apr-11 21:37:24

I think that's why I didn't have the tests TBH. Usually i don't like surprises, and I like to know what's coming. But the impression I got that +ve test = termination, not from the hospital staff, not sure where I got this idea really.

jester68 Sun 10-Apr-11 21:41:27

I think a lot of it can be fear of the unknown.

My godparents had 3 children of their own but they decided to adopt as well. After a lot of research they chose to adopt a little boy with downs syndrome. He was in an institute (many years ago), and was deemed to not have long to live as had serious heart problems. He is now in his 30's and does still have problems but has been to college ,works as a volunteer plus colects glasses in local rugby club. He plays pool/darts.

They also adopted a little girl with ds who is so loving. She is in her 20's now and goes to college ,out with some friends etc.

They live a relatively normal life but it is hard on my godparents- they are a lo older now and have some health problems. Their adoptive children will never be able to live independantly so have had to find places for them. This is on sites where they can live semi-independant but help is available to them 24/7.

It has been hard for them but they have never regretted giving these children a home and loving them.

But personally I can understand why soem parents would feel they could not cope

Greythorne Sun 10-Apr-11 21:42:17

I think some people have a very narrow, picture postcard idea of a perfect family, with two parents and two NT children (one boy, one girl) and the idea of anything which does not appear in their imaginary picture (divorce, non NT child, car accident) is not something which they would choose for themselves, given the option. But, as I said, it is incredibly narrow and most sentient human beings recognise the value different people bring to the world.

The trouble is that there are millions of possible disorders / illnesses that a foetus could have, but we don't know how to screen for them all, so we just focus on the ones we can screen for and then those disorders become highlighted and prompt people to have conversations of, "could I continue with a pregnancy if the baby was DS?" whereas we just can't pose the same questions viz autism, left-handedness, dyspraxia, MS, bipolar, or take your pick etc. It means DS is singled out and people who have never met a child or adult with DS in their life are suddenly questioning their right to life.

Frankly, I don't get the "what would happen to my DS child if I die young" theory, as that scenario can spell big trouble for all sorts of children (such as if I were a widow or a lone parent with an absent ex or even happily married but with a partner who works away from home and has only limited contact with the children). OK, I know that the implication is that eventually, NT children leave home and fend for themselves, so are not reliant on parents all their lives, but some DS children are able to do this, so who can predict?

sungirltan Sun 10-Apr-11 21:42:42

because some people feel that to bring a child into the world whose life is already compromised is ethically wrong

i think that to suggest that parents abort ds babies out of some kind of vanity is a bit patronising

SanctiMoanyArse Sun 10-Apr-11 21:45:13

'OK, I know that the implication is that eventually, NT children leave home and fend for themselves, so are not reliant on parents all their lives, but some DS children are able to do this, so who can predict?

Perhaps but I have to say this is something with my (SN, not DS) boys that does keep me awake.

I'd not choose differently mind, but I'd lie to say it was not a concern.

PonceyMcPonce Sun 10-Apr-11 21:48:18

Surely it is a reasonable fear for parents, what would happen to a dependent if one or both died. That is why we have wills, life insurance and alternative caters specified if we are prepared and fortunate enought to have candidates.

A dependent of 35 is more likely to be left alone. That would scare me.though, as I said, we declined testing. Does not mean it is not a legitimate concern.

LesAnimaux Sun 10-Apr-11 21:48:20

Wow, so many replies!

suntangirl I really hadn't thought some people might feel that to bring a child into the world whose life is already compromised is ethically wrong. That's really surprised me.

LesAnimaux Sun 10-Apr-11 21:49:10

sungirltan, I mean, sorry.

Changebagsandgladrags Sun 10-Apr-11 21:50:54

I don't know. I ummed and ahhed about this, wondering what I would do, what if.

There were certain things I took into consideration:

1. I already have one DS, I didn't want to be giving him a life sentence of looking after a sibling.
2. We both have to be able to work full time.
3. We're not getting any younger.

Then there was also the perfect family image. I don't know what I would have done, but either way agonising.

Dilligaf81 Sun 10-Apr-11 21:51:16

I think its a very personal question which changes at different times in your life. When I had DC4 Everyone was offered testing (I wasnt offered it previously still being in my 20's) which came back as high risk. We went ahead with a CVS and had decided that is DS was confirmed we would terminate. We agonised over this but the overriding feeling was it wasnt just about us but our other 3 DCS. If this had happedned with DC1 we wouldnt have had testing as it was just us to condsider. The other reason was that with DS it is such an umbrella term with no way to see the severity of other health issues until after the birth.

There is a genetic condition carried in my family that I decided not to test for as I know I could cope with the problems this would bring.

Greythorne Sun 10-Apr-11 21:51:36

Please explain "life is already compromised", sungirltan and why it would be morally wrong

Aliz07 Sun 10-Apr-11 21:52:32

I haven't really posted here but this thread really got me!

When pg with my 2nd I was advised to terminate as a scan showed a heart defect that "probably meant he had DS". The consultant painted a very bleak picture of what life would be like and was almost annoyed when I refused the termination. My son was born with no heart defect or DS and is now a happy 8 year old.

I went on to have a 3rd child, born healthy who developed a brain tumour at 18 months and has very severe brain damage requiring 24 hour care. Of course I wouldn't swap him for the world but several family members have voiced the opinion that maybe it would have been better if he hadn't survived

Anything can happen in life, none of us know what's around the corner.

SanctiMoanyArse Sun 10-Apr-11 21:53:24

I have to say, I don;t expect ds2 to become a carer for his siblings; I make sure I never give him that message and intend to persuade him to atend college near Mum's, rather than feelm he has to stay close.

I doubt 2 of the boys will need formal care, more support, but ds3 will- I would be sad if ds2 did it though. I'd like him to be their advocate but that is different indeed and still his choice.

marmaladetwatkins Sun 10-Apr-11 21:53:41

I don't know either but what I will say is that I think that people who give up on DS children will most likely miss out on sharing life with loving, warm children with tons of personality (I have a friend who fosters DS children given up for adoption)

fortyplus Sun 10-Apr-11 21:54:02

SanctiMoanyArse - I do hope I didn't offend you - I was just being open about how I personally felt about testing for chromosomal abnormalities with my 2nd pregnancy but not my first. I love my boys just as they are and I have no doubt that I wouldn't have felt differently if they'd had sn. They have friends with sn - one partially sighted and one with Duchenne muscular dystrophy which of course is far more life limiting than most cases of ds and not dignosed at birth.

marmaladetwatkins Sun 10-Apr-11 21:55:14

Aliz for your family members.

SanctiMoanyArse Sun 10-Apr-11 21:55:36

Not offended at all. Better IMO to have these discussions openly than hide away.

sungirltan Sun 10-Apr-11 22:11:19

greythorne i said ethically, not morally. i also said that 'some people' think that, not that it is a universal fact. morally would suggest that i think parents who go ahead with a ds pregnancy are wrong. this is not true - not so much a fan of eugenics!

Shoesytwoesy Sun 10-Apr-11 22:32:30

I would love to know why people start threads like these.
are they that bored

naturalbaby Sun 10-Apr-11 22:40:07

well I've never met anyone in RL who's found out their baby has DS before birth so is an interesting thread for me to see other people's views.
I think it's a bit sad that it's considered a life sentence for siblings of children with disabilities. I did work with one family who expected their children to care for their severely disabled sister when the parents were not around and I was horrified.

shoesy although a very difficult topic, I've actually found this thread very useful and interesting to hear different opinions. You don't have to comment on it if you don't feel the same.

Well I had the blood test....low risk, need not carry on with further testing. Bled on and off throughout pregnancy, problems with my previous 2 pregnancies so was watched and scanned like a hawk. Baby came, 1 week early, good weight, guess what?.............down syndrome.
I don't think it's fear as in scared, however the future is a worry.
lol shoesy.

hellymelly Sun 10-Apr-11 23:06:59

I don't know either,I think it is mainly fear? I don't think having Down's gives a child a terrible life,they aren't in pain,they can work,make friends,fall in love.The only slight issue for me when I was given quite high odds for my second baby ,was how it might have an impact on the first one,but I didn't have any more testing.Almost all Down's babies that are tested for are aborted which does surprise me. The one big thing I hate about the reporting of this is that it always stresses how many "normal" babies die (from miscarriage) as a result of amnio,as if the babies with Downs don't matter at all.I find that really upsetting.

I disagree helly.........my ds has a terrible life!! He suffers quite a bit in pain, doesn't want friends, doesn't want to socialise within the family never mind outside. Has difficulty accessing school never mind other social settings. Has a severe heart condition, physical problems with his feet, legs, hips and knees. Severe anxiety issues, challenging behaviour..........shall I go on.

davidtennantsmistress Sun 10-Apr-11 23:15:49

for us personally both PG's there has never been an issue over a DS child. out outlook was the child would be loved just the same as any other & we'd get on with things, they would basically do things some kids can't and not do stuff other kids can. DP has experience with SN, and likewise I was brought up with DS in the form of an aunty so to both of us water off a ducks back as it were.

However we did agree that if we had a child with severe SN we would have to reassess and do an awful lot of soul searching. from the POV of quality of life for both our current children and that of the unborn baby. I am uncomfortable with the thought of DS being a carer possibly at 5 for a sibling. hopefully we will never be in that situation, but I think it would be a decision we'd have to think very very long and hard on. (we were talking about very severe next to no quality of life senarios). Hope that doesn't offend anyone.

edam Sun 10-Apr-11 23:22:49

What would worry me is that Down's covers a huge spectrum, from children who are reasonably healthy to those who are very badly affected indeed, with life-threatening heart conditions for instance. And that it's not just about the health problems they have at birth – as the lifespan of people with Down's has lengthened, it seems many are succumbing to very early dementia, often in their 40s. About the age at which their own parents are very elderly or dying so no longer around to fight their corner.

I have no idea what I would do were I in the situation of having a high-risk pregnancy. But these are the things I would be considering.

FabbyChic Sun 10-Apr-11 23:30:43

Some need constant care, some are not able to hold down jobs, look after themselves or ever be without 24 hour care.

Some parents cannot give that for an infinite amount of time.

I was told my first had DS the first thing they said was you will have to have a termination, I asked for more tests and they were fine.

However, I would have terminated. I wasn't in a stable relationship, I didn't have my own home I lived at my bf's mum's house in one room.

I had no support network.

I think lot's of things have to be factored in for me a termination would have been the best way forward, this however was 25 hears ago.

bronze Sun 10-Apr-11 23:34:21

I have recently watched a friend get more and more ground down looking after her brother with ds (she has her own family too). Normally I would say ds isnt a reason to abort I didnt test for this reason but if she chose to I could completely utterly understand her reasoning. Maybe some people ar elike her

DuelingFanjo Sun 10-Apr-11 23:37:56

I wouldn't want to have a child with Downs Syndrome because there is such a wide spectrum of disability involved and while many adults live quite independant lives with DS, there are many who don't/can't. you can't have tests to tell you which end of the spectrum the baby will be on.

I had the Nuchal test and then an amnio and would have terminated had I been told my child had downs syndrome because I did not want to leave an adult in tis world with no siblings and a disability. Of course my DS could have had any number of undiagnosable conditions and did infact spend some time in neo natal but the tests were available for a few conditions so I chose to have the ones I could.

It's a personal choice.

I also hope that anyone who has chosen recently to terminate a pregnancy for this reason hasn't read this thread and been upset by it.

Bunbaker Sun 10-Apr-11 23:40:46

"Almost all Down's babies that are tested for are aborted which does surprise me"

Why? I don't think it is fair to judge people who decide not to continue with a pregnancy. The world isn't full of saints and martyrs.

I didn't have any tests when I was expecting DD because it was a long awaited pregnancy and I would have wanted the child regardless. As it turned out she had health issues that required 24/7 care until she was three and a half. If I had managed to get pregnant again I would have had every test going because having looked after one child with extra needs I didn't want another one. Our ages counted against us as well. I was 41 and OH 48 when DD was born. We live hundreds of miles away from our families so if we'd had a DS child the chances are that he/she would have had to go into care when OH and I were too old to care for him/her.

NonnoMum Sun 10-Apr-11 23:43:01

Apart from any wrongs and rights, is it really true that there are less and less DS children? Is there any connection with birth rate and older parents, and lots of very capable parents choosing to bring up their DS child (Sally Phillips and others)? Isn't there more support now than there used to be? (excuse me if I am ignorant here, but genuinely asking...)

chickchickchicken Sun 10-Apr-11 23:48:42

i read a thread this morning and felt very sad that the decision was to terminate because of ds
that is not to say that i judge people who do that but i do find it very sad. it isnt something i tested for
i too am confused why termination seems almost automatic for some people

DuelingFanjo Sun 10-Apr-11 23:50:39

I also think that people who do have a child with DS shouldn't take other people's choices to terminate their own pregnancies to mean that those people are saying ALL children with DS should be terminated. One can only make a choice about one's own situation and it's wrong to interpret it as an attack on all people with Downs syndrome.

Re the fact that anything could happen to any pregnancy or child and result in disability, of course it could but no one can ever prepare for every eventuality and there is a difference between making a decision when presented with all the facts and having to deal with a situation which was totally unexpected. This kind of genetic testing is here to stay and no one is forced into having the tests done if they don't want to.

catsareevil Sun 10-Apr-11 23:56:00

"Almost all Down's babies that are tested for are aborted which does surprise me"

Not really surprising, because people who wouldnt plan to terminate for Down Syndrome have less reason to have the tests done.

Bunbaker Mon 11-Apr-11 00:09:41

"One can only make a choice about one's own situation and it's wrong to interpret it as an attack on all people with Downs syndrome."

Totally agree.

Thingumy Mon 11-Apr-11 00:13:33

I knew a woman who had a down syndrome child-ds attended the special needs nursery at the same time as her daughter

She was offered a termination but refused.

Her daughter is a beautiful child and they are all happy (albeit stressed with the constant care and worry of what happens 'when we get too old to look after her').

There are different levels of special needs within the downs syndrome.

I knew of a couple who married,both were downs syndrome.How wonderful is that?

I would not terminate but can understand those who do.

needafootmassage Mon 11-Apr-11 07:04:59

Thousands of babies with no syndromes are aborted for a huge number of reasons - you'd have to look at the whole issue of abortion per say to explore this one.

My son is what I would call a 'tough' doctor - not remotely sentimental and certainly very pro-choice. But one thing he has always privately said is that he cannot understand the negative feeling around having a child with Downs' Syndrome; he says would never risk losing a baby of his with this syndrome. He feels they are the only children you could almost guarantee you could provide a good quality life for just by loving them, children who would be consistently happy and a joy to be around. And just as funny, lovable, curious, interesting and individual as any child you might be lucky enough to have. What's not to like?

I do understand the fear of what might happen to them after the parents have died but I think most people are able to adapt to new living circumstances if they had not been living independently of their parents beforehand anyway.

missmapp Mon 11-Apr-11 07:14:45

Haven't read the rest of the thread but, when I was pg with ds2 , he had a thick nuchal fold and we were given a 1 in 4 chance of him having downs. We never cosidered ending the pregnancy, but we did face a lot of opposition from family when we told them that. My mum in particular was convivnced we were ruining our family if ds2 was born with downs. As a result I was fiercly protective of ds2 before he was even born. He was born with a heart condition and a mild genetic disorder ( not downs) and people kept saying 'you must be so relieved' we wernt, we were thankful for our beautiful boy just as we would have been however he was born.

I would never judge anyone, whatever decision they make, it is very personal, and very hard. We were judged and it wasnt nice!!

frakyouveryverymuch Mon 11-Apr-11 07:26:07

Whilst we tested, I wouldn't have terminated. I would have worried about it, yes. I did worry - who doesn't? A child with any kind of additional needs has just that, additional needs which place extra pressure on resources whether that pressure be emotional, financial or just in terms of time. I had the tests so we knew, within the limitations of possibility, whether there was anything we could prepare for. Maybe if we'd been in a different situation or we didn't have religious objections to termination we would view things differently.

I wasn't worried by Downs, but it comes as part of a package of tests for other things I did worry about.

needafootmassage I agree, however what's not to like? The aggression, unpredictability, strength, strong willed, stubborn, withdrawal, the things he can't/won't do, the constant worry, constant supervision, hard to handle, temper.........................

needafootmassage Mon 11-Apr-11 07:37:51

Sounds like my son when he was younger!

needafootmassage Mon 11-Apr-11 07:39:45

Sorry, being serious - the reality is only ever going to be known by the ones who are doing the day to day care, not by some young doctor who sees the child beaming cheerfully at everyone at a hospital appointment.

"I wasn't worried by Downs, but it comes as part of a package of tests for other things I did worry about."

In other words DS is a worry due to the other issues that can arise!
For us when we found out about our son's heart condition, obv we were both worried. When they later queried DS, my hubby was worried about the heart whereas I was worried about DS.

But I never said my son was young.

lol, I wished my son beamed nicely at his hospital appointments.

needafootmassage Mon 11-Apr-11 07:45:12

'But I never said my son was young...'

You're right, and thet's why I apologised. It was a very flippant remark, thoughtless of me.

frakyouveryverymuch Mon 11-Apr-11 07:53:44

devientenigma - I was more worried about Edwards and Patau because then you do face horrible choices. Continue and have a hugely increased likelihood of miscarriage/stillbirth or if you carry to term then high likelihood of infant mortality and if they make it past a year then only a very small chance of a high quality of life - what's best when your personal beliefs are pro-life for all life?

A heart condition or other soft markers for Downs weren't really a concern. I mean they were a concern in terms if health/outcome for the baby but not in terms of our ability to cope.

"Well I had the blood test....low risk, need not carry on with further testing. Bled on and off throughout pregnancy, problems with my previous 2 pregnancies so was watched and scanned like a hawk. Baby came, 1 week early, good weight, guess what?.............down syndrome."
Something I wrote previously in the thread, not highlighting the scenario as much as frakyou. For me though, does this make it more worrying?? No.

needa, we are all entitled to opinions and I agree you apologised, people tend to speak first, think later and it's more often those who can't see where they have, which makes DS for some probably always a reluctance to inclusion.

sungirltan Mon 11-Apr-11 09:04:34

agree with duelingfanjo

i dont think you have to make excuses if you choose to abort with a high likeliness of ds though. it isnt wrong and neither does it make you prejudice toward the people with disabilities.

computermouse Mon 11-Apr-11 09:09:15

Message withdrawn at poster's request.

DuelingFanjo Mon 11-Apr-11 09:12:22

The blood test may tell you if you are high or low risk but it's not conclusive. An amnio or CVS is really the only way that a person can know for sure.

computermouse, sorry it's distressing. Though, really, a person's own personal decision about their own pregnancy is in no way a reflection of how they feel about people who are living with a disability already.

I thought the same as EllAEllO.

I weren't going to post here as I feel this is something you have to be very careful about, then I read computermmouse post, just had to say I can imagine this would be hard to read. Hope you are ok.

computermouse Mon 11-Apr-11 09:16:40

Message withdrawn at poster's request.

FanjOeuForTheMammaries Mon 11-Apr-11 09:18:13

It is also hard to read as parent of a disabled child. Would never have posted on such threads before DD was diagnosed tbh, not exactly sensitive IMO

AbiAbi Mon 11-Apr-11 09:19:22

I think a lot of it is feat. Fear of the unknown, fear of isolation, fear of not conforming.

We were given odds of 1:65 for our DS2 having downs. We refused all diagnostic testing (much wanted pregnancy, DS1 passed away when a baby). I knew I would keep the baby whatever , but I am very lucky in that I have lots of support, and obviously my past experiences impacted hugely on our choice.

I would also add, for anyone looking for advice about Downs/ testing, the 'pregnancy choices' board in Mumsnet is incredible, full of non judgemental advice.

FanjOeuForTheMammaries Mon 11-Apr-11 09:19:24

Watching my sweet DD playing and reading about people aborting children like her is just so lovely

Maybe a possible reason is that caring for a child with DS requires a hell of a lot of commitment and some adults feel that they won't be up to it and therefore won't give their child the best that they require if they had DS.

I work one to one with children with DS, and it is very very intensive, very rewarding, very enjoyable, but their parents put so much in, all the time, in order to give them the best start in life, and I have worried sometimes that I, as a parent, might not be able to put so much in and be so dedicated and selfless.

I don't know. It is such a tricky sensitive issue. But if someone feels that they couldn't cope, then fair enough. Better not to have a child with DS is you think you genuinely couldn't give it the best and be fully committed.

FanjOeuForTheMammaries Mon 11-Apr-11 09:23:28

I wouldn't actually judge people for their decisions. But talking about it on a thread like this like it's just an interesting topic just sucks.

Anyway, am going out, my point of view isn't being acknowledged anyway.

Lollybrolly Mon 11-Apr-11 09:23:29

For me the fear was greater with my 2nd pregnancy. Having had my 1st child with non visible abnormalities discoverd at my 20 week scan was quite an eye openener to me. A bit of a shock. That actually these things happen to normal everyday type of people like me. Termination was not an option though as although the extent of her abnormalities was not known, it was thought to be operable and that she would lead a pretty normal life (plus I was 20 wks). I suppose I had been a bit naive until that point - head in the sand etc. My first DD is now almost 13 and has had plenty of ops and treatment and lives a pretty normal life with regular hospital checks and visits.

Then when pregnant the 2nd time - I was so anxious. It was not just about me and DH anymore. But our DD had a life that we were happy with and a child with Downs or any other abnormality may have a great impact on my existing DDs life - not just now but in adulthood too, when we were old or dead. It was not what I wanted for my DD having been through a traumatic first 3 years of her life. Tbh - I am not sure I would have coped with another child needing regular hospital care etc. Well tbh, I am sure I would have coped - you just do because you have to - you have no choice but it was not what I wanted for me, DH or DD.

Thankfully 2nd DD was born without any problems not even the same condition my eldest DD was born with. For which I am thankful everyday.

computermouse Mon 11-Apr-11 09:24:37

Message withdrawn at poster's request.

I think some people can be ignorent, they feel how they feel and nothing will change their minds, and that is ok if they are faced with the decision as it is their decision ect, but people should sometimes think also before they comment.As there are alot of children and adults with DS that have very happy lives.

For some people it may be the fact they are just scared, but I do think we all need to be a little bit more aware of what we are saying and how we say it as it does hurt people who have disabilities. But they are still people!

Cattleprod Mon 11-Apr-11 09:31:43

I often wonder how people with downs syndrome feel about the fact that their condition is seen as a reason for termination.

I have only met a couple of people with DS, and I guess they will have been on the more 'high functioning' end of the spectrum, but one was a brilliant dancer, and the other a talented artist who I believe had his work exhibited in the Tate Modern. Both had an understanding of the world, and were perfectly capable of holding an intelligent conversation.

I have a minor deformity, a cleft lip, which was at one point (1950s?) seen as a reason for termination, a fact that I am horrified about. I can't imagine how much harder it must be for people with DS if they are aware of the fact that foetuses just like them are regularly being aborted.

computermouse Mon 11-Apr-11 09:39:26

Message withdrawn at poster's request.

babybythesea Mon 11-Apr-11 09:50:52

My BIL grew up with a brother with DS. He is adamant that if a child of his is shown to have DS he wants a termination. His brother is in his 30s and in a care home.
I think some of it came from childhood - his brother is quite severely disabled and it meant that a 'normal' childhood for both brothers was difficult. As he grew up, his brother became increasingly aggresive and it meant that at one stage his parents were scared to have him at home because if he lost his temper it got too hard for them to manage. He has to be looked after constantly, so if family all meet up either his parents have to look after him or extra has to be paid for a carer to come too. If it's a family meal for example, it can start to get expensive for a not very well off family. But you have to watch him like a toddler - he loves food and has to have his food monitored constantly so he doesn't get too overweight, and he will take food if not watched. You have to have stuff on hand for him to do, in case he gets bored and frustrated. Or he'll wander off. His communication is bad so it's hard to understand him which means he can get frustrated, and he can get violent. It means if he's not there, you are aware of the gap and if he is, it is hard work.
The thing is, he's in his thirties. Going to things (especially formal dos like weddings) with a toddler is hard work but you expect it to be. But you expect to be able to relax as the children get older and to be able to have a laugh with them by the time they are adults. His family just don't have that. He is a very big toddler with all the frustration that brings, and all the work, and all the mental strain of being constantly aware of where someone else is and what they are doing.
My BIL says that growing up, he always took second place because of his brother's needs. He understands why, and he loves his brother, but it doesn't make it any easier. Things like going on holidays became out of the question as his brother got older and more unpredictable, so even when they could have afforded it they never went on holiday as a family because his brother was too hard to manage in an unfamiliar setting.
So it's not just the child, it has an impact on the whole family. And you can't tell how bad it's going to be. A test will tell you that the child has DS, not how bad they might be, so you might end up with a child who is virtually 'normal' in terms of development etc, or you might end up with a child like my BIL's brother. He just won't take the risk.

Ragwort Mon 11-Apr-11 09:51:06

Let's be honest - some people do find it incredibly hard to cope with a child/adult with DS (or other 'disabilities') - I am sorry that there is no easy way to say this but it is true; I know a number of people with children with DS - some cope brilliantly, they are outgoing confident people and bring their child up to be outgoing and confident; others do not cope - they (and their child - plus other children) can become socially isolated, they are frightened to go out, have no support network etc etc (yes, I KNOW that society is at fault for not being more understanding & supportive but that doesn't actually help these families does it?). Relationships and marriages break up. These parents aren't likely to come on an internet forum and say 'I can't cope - in hindsight I wish I'd had a termination' are they?

My friend has a sister with DS, he is in his late 50s - he has very, very limited quality of life, cannot move or communicate; is fed through a tube; (lives in a very bleak 'institution' - yes, they still exist); his own parents are mid 80s with alzheimers - my friend has to care for all three as well as bringing up her own family/working etc. Sorry to be blunt but that can be the reality for many carers.

I am grateful that I never had to make the decision whether to terminate or not but I would never judge those who do.

DuelingFanjo Mon 11-Apr-11 10:06:36

I am sure this thread is equally distressing for those who have made the difficult decision to terminate a pregnancy. I know the thread that the OP is probably talking about and I think this thread is hugely insensitive towards that person.

ashamedandconfused Mon 11-Apr-11 10:17:29

if you are told the baby you are carrying has a chromosonal abnormality (downs syndrome being just one, perhaps the most well known) then the problem is that no one can tell you the degree to which your child will be affected. there are many health complications that go hand in hand with downs - including heart, lung and digestive problems.

we have friends who chose to go ahead with their pg knowing their baby had downs, and miscarried at 38 weeks. They had been told that about 80% of DS babies are MC/stillborn. They had hoped they would be in the 20%.

So,the DS adults we see living in the community, working, being able to have a relatively happy, healthy, fulfilling life are the very thin end of the wedge. we dont see the ones who died very young, who suffered very painful operations from birth, or who need such a level of care they are shut away from the world.

we chose to terminate a pg for a much rarer abnormality, and we live with that decision every day

as an opinionated teen, i would have said I would "never" have an abortion, as a young naive 20 something pg with first child, we also said we would not tx should the question arise - we were financially secure and had a good support network. But 2 healthy toddlers later, when faced with a decision to have a (quite late)tx or not, a decision that would have a huge impact on our existing DC and our wider family, and now living away from family support network, we chose to tx

its each to their own. yes some parents go for tx because they want a perfect baby, others feel it is better for their existing children, others think why should I bring this child into the world knowing it will suffer, need immediate heart surgery, and then possibly still die before it is an adult - and as i said, some choose to carry on and lose the baby before term anyway.

all I can say is, if you have not been in the position of having to make that decison, you cannot KNOW what your decision would be.

and having made your decison of what is best for YOU, at that place and time, does not give you the right to judge someone whose decison is not the same as your own.

whitevanwoman Mon 11-Apr-11 10:17:29

i wouldnt have gone ahead with a DS baby. I cant say exactly why, I just wouldnt. Same as I wouldnt want to have a baby whose entire life was filled with pain, hospitals and endless operations

FanjOeuForTheMammaries Mon 11-Apr-11 10:19:20

Yes, this thread is awful on all levels.

expatinscotland Mon 11-Apr-11 10:19:25

People are perfectly allowed to have opinions, ashamedandconfused, it's just that when they're not in line with one's own one tends to see the difference as judgement.

ashamedandconfused Mon 11-Apr-11 10:26:16

expat - of course people are allowed their own opinions and alowed to discuss their thoughts,of course - their opinion of what THEY would have done, which unless faced with the exact same set of circumstances you cannot compare anyway! But not the opinion that YOU SHOULD NOT HAVE DONE THAT thats where it crosees the line between opinion and judgement, IMO

expatinscotland Mon 11-Apr-11 10:32:41

That's the whole point of an opinion, ashamed. I think David Cameron should not have flown on RyanAir trying to pretend he's a prole. That's an opinion that has nothing to do with what I'd have done.

He doesn't give a shit about my opinion, does he?

Then why care about what strangers think of what you've done and scorn them? It's not illegal.

needafootmassage Mon 11-Apr-11 10:40:24

I'm really sorry for anything I have contributed to this thread that has caused distress. I wish I had stayed away - normally I think dialogue is better than no dialogue where sensitive (and often taboo) topics are concerned but this is probably too far beyond my experience for me to have commented.

So apologies.

wannaBe Mon 11-Apr-11 10:53:29

people are kidding themselves if they think that a termination for disabilities is not a reflection of how they personally feel towards people with disabilities. Of course it is. It's a very nimby message - it says "well yes, of course there are people out there with disabilities living their lives, I just don't want them in my life."

And why shouldn't people with disabled children or that have a disability be offended at the implication that disability is something that should be terminated? The message is clear; "if you were my child, then you wouldn't be here."

Of course there are some disabilities that are incompatible with life where one could perhaps not imagine continuing a pregnancy, such as anencephaly, where the baby dies during or shortly after birth. But that does not compare to conditions such as downs where many children grow into semi-independent adults capable of leading a "normal" life.

People are free to make their own choices, but when they do make such choices shouldn't expect the parents of similarly disabled children to not feel offended or take it personally.

edam Mon 11-Apr-11 10:56:50

wannabe - everyone has to make their own choice about their own bodies and their own families. My decision, if I faced one, would be about my circumstances and my experiences. Not a judgment on anyone else.

hellymelly Mon 11-Apr-11 11:17:06

I should add that my feelings on this are coloured by my best friends's son,my Godson,who has very severe autism and will never be able to live independantly .He is a very much loved and wanted boy who is valued completely for himself, something which I try to remember when parenting my own children.I understand that people's circumstances vary hugely,and that parenting a child with a disability can be extremely hard. I feel sad that society is so unaccepting of difference and that parents have to battle for any tiny bit of help.There does seem to be a medical push towards termination and that does really bother me,but I am not judging any individual who has made that choice because it is a completely personal one.I really wish that there was much more support for the parents and children who need it.

CoteDAzur Mon 11-Apr-11 11:47:40

I wouldn't abort for most disabilities but I would abort for those affecting mental capacities like Down's Syndrome.

GrendelsMum Mon 11-Apr-11 12:02:59

My cousin has DS - he's now 35 or so - and the thought of his future is very stressful for my aunt, especially as she had him later in life and her DH died when he was young. She loves him dearly (he's a very nice person), but she's very aware that before too long she won't be able to care for him as she has done, and he'll then be (comparatively) alone in the world.

Bunbaker Mon 11-Apr-11 12:17:51

"people are kidding themselves if they think that a termination for disabilities is not a reflection of how they personally feel towards people with disabilities. Of course it is. It's a very nimby message - it says "well yes, of course there are people out there with disabilities living their lives, I just don't want them in my life." "

Utter nonsense. I think most people feel that they will be unable to cope. Plus there is the future to think of, especially if the parents are older.

"some people do find it incredibly hard to cope with a child/adult with DS (or other 'disabilities') - I am sorry that there is no easy way to say this but it is true; I know a number of people with children with DS - some cope brilliantly, they are outgoing confident people and bring their child up to be outgoing and confident; others do not cope - they (and their child - plus other children) can become socially isolated, they are frightened to go out, have no support network etc etc (yes, I KNOW that society is at fault for not being more understanding & supportive but that doesn't actually help these families does it?)."

I disagree, We are a confident family, who cope most of the time, however we are a socially isolated family due to my sons needs/issues, even isolated by family and networks of disability etc. This has nothing to do with us but the hand we were dealt, there is nothing we can do to change his issues. It's also the system around the child that can let the family down leading to isolation etc. Hope that makes sense. As I am trying to post, I have my son who happens to have DS banging off walls for his dinner, he isn't capable of doing it himself and he doesn't understand,......in a min.

"some people do find it incredibly hard to cope with a child/adult with DS (or other 'disabilities') - I am sorry that there is no easy way to say this but it is true; I know a number of people with children with DS - some cope brilliantly, they are outgoing confident people and bring their child up to be outgoing and confident; others do not cope - they (and their child - plus other children) can become socially isolated, they are frightened to go out, have no support network etc etc (yes, I KNOW that society is at fault for not being more understanding & supportive but that doesn't actually help these families does it?)."

I disagree, We are a confident family, who cope most of the time, however we are a socially isolated family due to my sons needs/issues, even isolated by family and networks of disability etc. This has nothing to do with us but the hand we were dealt, there is nothing we can do to change his issues. It's also the system around the child that can let the family down leading to isolation etc. Hope that makes sense. As I am trying to post, I have my son who happens to have DS banging off walls for his dinner, he isn't capable of doing it himself and he doesn't understand,......in a min.

don't know what happened there blush

SanctiMoanyArse Mon 11-Apr-11 12:47:19

I would want to reiterate what computer said (IIRC) earlier on: if youa re adament that you could not cope with a disability you should rethink / wait a bit before having kids, becuase some of the very most severe disabiltiies happen at or after birth; and none of us is more than a bus crash away from disability.

Now, I don;t mean 'want to have to cope'- nobody does, do they? But you have to be able to pull on a certain inner resource because it can happen to anyone and if it does it's your responsibility to sort it out. far from what some people think, there will not be anyone turning up from taxpayers funding to help or solve it: it's you, your child, and if you are lucky you'll have a dh who hangds about (something like -80% of amrriages where there is Sn fail).

SanctiMoanyArse Mon 11-Apr-11 12:52:06

'There does seem to be a medical push towards termination and that does really bother me,but I am not judging any individual who has made that choice because it is a completely personal one'

Sort of agree

I do think as I said earlier that many people don;t have any experience of disability and that the unknown is often mroe scary than reality; that's only solvable by widening society to allow disabled people into it's midst (ie no cats bum faces when a child screeches in Asda, or complaints about funding for TAs at the kid's schools).

Also when I ahd my high risk result for ds3, albeit 8 years ago (he's 8 in the summer) Dh and I both felt very much under pressure to have amnio and terminate if positive; certainly we took several phone calls from MWs advising us to go to the clinic and book in for amnio just to have the chat yet the amnio nurse counsellor told us if we weren't likely to terminate, walk out before the consultant arrived becuase once he did there was no getting off that jugganaut.....

I had no issue with being offered the tests but didn't appreciate the pressure. Had ds4 in Wales and was subjected to far less.

SanctiMoanyArse Mon 11-Apr-11 13:01:25

<<hugs>> Fanjo.

I do think th topic needs talking about though: DS is one test: theya re striving for otehrs. The one speople rave on about wrt to ASD are still not rlaity but if they were? Would we wipe out the maths geniuses with the severely disabled chidlren (that's not my example, it's Baron-Cohen's in fairness, ARC Cambridge). For every severely disabled asd child there is ten or probably more with a mild presentation who goes on to have a full life.

Yet a test for X gene or Y abnormality (yep, that's how far away we are from it!) could not tell you how it woudl affect.

So it's a chat that needs to be ahd, with sensitivity on both sides.

But even tests can go wrong, Sancti. I had DS on the front of my notes with dh niece being DS, though nothing was picked up for us until after birth, after finding the heart condition. So even with all the test there could still be a possibilty of disability. IYSWIM.

Debs75 Mon 11-Apr-11 13:13:03

I think the reason many parents seem to not want a baby with DS is because it can be tested for so parents who are worried about DS and any extra strain on their family they feel it will add have the tests then can terminate if they feel that is the right thing for them.

I know a couple whose first 3 pregnacies tested positive for Cystic Fibrosis so they terminated all 3, 1 at 6 months. That really got to me as she put herself through so much pain so she could get a 'normal' child.

I was offered the test with my last 2 pregnancies as I was over 30 but as I already have a child with ASD I knew I didn't need to know if there was a chance my baby could be disabled.

From personal experience watching my child regress before my eyes and then be taken over by Autism was one of the most scariest things I have ever gone through, especially as there was nothing we could do to halt the changes. If he had been diagnosed before birth then at least we would have an idea of what was going to happen. It wouldn't have made the outcome any different but at least we would be forewarned.

I do feel sad that years ago disabled babies were left to die or taken away from the family like they were a burden. My grans friend's son was forcibly taken from her when he was diagnosed with Autism and placed in a home until he died. Then we have had parents who wouldn't give up and DS and other disabilites became more visible as they fought to keep their children at home and fought for the care they needed. Now with in utero testing less DS children are being born so it is being hidden away again.
IYSWIM, too little sleep and getting muddled now.

SherlockMoans Mon 11-Apr-11 13:15:07

I cant say why other people didnt but personally had I been given indications of a high chance of DS I would have terminated the pregnancy firstly I had never felt an overwhelming urge to have children at all and from my observations most families where a child has a significant problem end up being single parent problems (not all but a significant proportion)

There are other potential problems with ds i.e heart problems.

Worry about care after I die.

Obviously something may happen in the future to my children but I have already bonded with them now so I would deal with it better.

I thought you were asking about your son too!

peeriebear Mon 11-Apr-11 13:19:14

My sister has Down's and at 11 is very hard work for my mum (she separated from her partner a few years ago and he has since died). My sister goes to a special needs school and has a mental age of around 4, yet is going through puberty. Coupled with that she has never conformed to the stereotype- "They're so cheerful and loving aren't they"- she is stubborn, rude, endlessly repetitive, wilful, sometimes aggressive. My mum didn't have any tests done because she would have not have terminated regardless. However she CAN see that other people feel the need to, and so can I. I have no idea what I'd do in that situation seeing how much of a daily grind it is for my mum.

Debs75 Mon 11-Apr-11 13:40:05

The worry about care after the parent dies is a very real worry. I don't see it as a reason to terminate but it is an added worry and some parents will see it as a valid reason to terminate
We have long worried what will happen to DS when we can no longer care for him. His elder sister flatly refuses to care for him but that might change in the future, he has 2 younger sisters but I worry how any of them will cope with him when he is middle aged.

elliephant Mon 11-Apr-11 13:45:47

To those who aren't familiar with Kelle Hampton's parenting blog may I please refer you bhttp://www.kellehampton.com/log

ReindeerBollocks Mon 11-Apr-11 13:50:52

Personally I know why people would abort and it's not always down to ignorance.

Sometimes it's being in a situation that is already fraught with worry and medical visits with the DC you already have, and the worry that you don't have enough time/attention/coping skills to care for another child with SN.

candleshoe Mon 11-Apr-11 13:59:45

I child minded for a very, very difficult little girl with Down's - she died of a hole in the heart and other complications at 15. It was very difficult to cope with this girl even when she was only 7 because she was rough, aggressive, willful and very, very strong.

I am not ashamed to say that two afternoons a week with this little girl were enough for me and if I had had to choose whether to terminate under similar circumstances I would have done so.

SanctiMoanyArse Mon 11-Apr-11 14:02:43

CS i'd never tell someone they were wrong to make that choice but I do think there's a difference; ds1 has a different dx but is violent, wilfull strong etc and I don;t know I could ask anyone else to deal with him often, but becuase he is mine I can, and I love him; love makes that difference IYSWIM?

Don;t get me wrong- I too ahev beenc arer for someone not related to me through work with severe violent ds so do know how that can be- but it's different from caring for ds1. or indeed ds3 who is non agressive but more severe. It just is,

candleshoe Mon 11-Apr-11 14:12:44

I do SWYM but I still think I couldn't have done it - I have had mental health issshooos of my own in the past and I think it would've been bad for me.

<ashamed of being utterly selfish emoticon>

SanctiMoanyArse Mon 11-Apr-11 14:22:39

I am ot sure being relaistic about one's own abilities makes someone selfish CS- far from in fact!

But you know, i'm not all that eihter. I ahve breakdowns and cannot cope sometimes and all the rest: I just amke sure kids aren;t in ear shot and get voer it by the time theya re. Dh has had huge MH issues, and gets on with it. I think you probably would too but in no way would say you should feel bad if you decided you could not.

All decisions after all are selfish in some way- in having ds4 with an elevated risk of ASD we knew we were risking him being a state financial drain; in fact I think having kids full stop is alregely selfish- genes, environmental impact etc.

Selfishness isn't always bad.

empirestateofmind Mon 11-Apr-11 14:29:21

My sister doesn't have downs but she is mentally handicapped and blind. The impact on our family has obviously been huge.

I have every sympathy for those couples who decide to abort. What a terrible decision to have to make.

I can't imagine the horror of living with that decision and do not feel that anyone has the right to judge.

DastardlyandSmuttily Mon 11-Apr-11 14:35:48

I know some people have been upset by this thread, but I have to say as someone who is just starting to think about ante-natal testing it's hugely interesting.

One of my biggest concerns is that having a child disabled from birth would very quickly become MY issue, not a family issue, as ultimately my DH would have to go out to work, and I would have to stay at home as a carer, much much longer than I would intend to for a healthy baby. I feel that child-rearing is something we want to go into together, and share the load wherever possible. But all I can see is that it would very quickly become a 'child's life versus my life' debate. I don't yet know how I feel about that.

WinterOfOurDiscountTents Mon 11-Apr-11 14:54:47

There are lots of things that can upset us as individuals, that doesn't mean other people can't talk about them.

I think you should all think yourself lucky you live in a country where you have options. I don't, here there is very little testing (private only) and no abortion for any reason even if you have the testing. You can travel of course, but thats a difficult process and little done for these reasons.

You'd imagine then that we might have better resources as we do have a higher rate of people with things such as Downs. You'd be wrong though, there's actually fuck all help for parents of disabled or differently abled children of any kind. sad

I have a friend who has a brother with DS. She loves him dearly and spends a lot of time with him, she's a great person. She also says though that she would rather never have children at all than have a child with DS. She's not ignorant, she's not naive, and she's not cruel. She knows the reality and she'll probably end up caring for her brother when her parents get too old. Can any of you balme her position?

Mishtabel Mon 11-Apr-11 15:06:41

I wasn’t going to post on this thread, as I feel it can be hurtful to all involved, however I just can’t let it go. I terminated in 2008 following a diagnosis of DS. There aren’t enough words to describe the thought process that led to my decision, though my main reason was, as a lot of people have said, fear: fear of the unknown, and fear of worst case scenario. I know no baby comes with a guarantee they will be healthy, something could happen at/after birth etc etc, but the risks with DS are increased. No one could tell me (of course) how severely my child would have been affected. The medical profession were very negative, I found.

I wouldn’t say ignorance was so much a factor, as once I knew the diagnosis, I read as much as I possibly could on the subject, spoke to the DS Assoc etc, and I think a lot of people do this when faced with the diagnosis.

It took me five weeks from diagnosis to make the decision. I went back and forth during this time. That’s not saying that I considered it more than people who took less time, or who know their decision beforehand, just that I had not given much thought to DS before diagnosis, whereas other people may have. Even though I knew the scan was for DS (amongst other things) I was getting the scan for the chance to see my baby, and for a picture for the album. Incredibly arrogant and naïve of me, I know. When asked what I would do if it my baby had DS by a friend, I was offended by the question – I’d have it of course.

I can understand parents of children with DS may feel offended by the decision I made, and for that I am truly sorry, as in no way do I look at people with DS and think they are inferior/shouldn’t be here etc. A sighting of a person with DS has more often than not, led to a wistful discussion between myself and DH as to what might have been if we had faith that everything would be ok. I’ve said it before elsewhere, but I’m sure if I hadn’t had the test and my baby had been born with DS, we would have coped, my worst fears would probably never have been realised, and I would be thanking God every day that he was a part of our family, though of course there still would have been concerns for the future. However, I’d had the test, I did know, and I made a decision based on the limited information available at the time (I say 'Í’as DH was totally at a loss and had left the decision up to me). Having said that, I can’t regret my decision, as if I had not chosen what I did, my DD would not be here now.

I’m not writing this to justify my decision, as I don’t quite feel the need to do that. I just wanted to answer the OP’s question by sharing a fraction of the thought process involved from someone who had been there. Although I don’t claim to speak for everyone who has terminated a pregnancy following a diagnosis of DS, its not usually, if ever, a decision that is taken lightly. I’d also say it’s a pretty safe bet that very few, if any, terminate due to the baby not being ‘perfect’. To suggest as much is just so far off the mark, it is not even offensive IMO – just an absolutely ridiculous and telling comment.

PS Ive read that Kelle Hampton blog before – it’s lovely. My dd shares a birthday and 'almost’ a name with hers

pinkytheshrinky Mon 11-Apr-11 15:20:25

I can tell you without a doubt if I had a baby with this diagnosis I would terminate that pregnancy immediately. If that makes me a bad person then so be it.

This is not a judgement on anyone with DS but I have four children - two out of those four have serious illnesses and special needs and I am an older parent and would not wish to leave that level of responsibility to that child's siblings.

It would be a simple decision for me - heartbreaking but simple.

computermouse Mon 11-Apr-11 15:40:07

Message withdrawn at poster's request.

DuelingFanjo Mon 11-Apr-11 16:26:54

good post ashamedandconfused.

"There are lots of things that can upset us as individuals, that doesn't mean other people can't talk about them" of course. However there are several things I haven't said on this thread because I know they may upset people. Sometimes self-censorship is important.

Had I terminated for DS, or another medical reason, it would have been because of the effect it could have had on my life as well as the issues it would bring once I die. You have to consider how the child will be cared for once you die as well as how their birth will effect your life.

When a child (or adult) is injured or damaged later in life (or birth) it is different, imo. With testing you can plan and consider your options, with later damage you just cope with it as it happens; with testing (amnio etc) you can know for sure.

edam Mon 11-Apr-11 16:27:20

If I had been faced with a decision like this when carrying ds, it would have been informed by my own experience and that of my family. I grew up knowing many people with physical and learning disabilities of various kinds, so (I hope) I have never been prejudiced - at least, as far as I am able to judge myself. My sister is an LD nurse who has often had to fight prejudice on behalf of her patients, even amongst other health and social care professionals, let alone the general public.

I did have more ante-natal testing than most people because I have a long-term health condition. I was not able to work out in advance what I'd do - all I could handle at the time was having the test and deciding that I'd think about the results when they came. Fortunately the results were all reassuring so I never had to confront what must be one of the hardest decisions anyone ever faces. (Although of course I was aware that no test gives you a 100% guarantee and that there are plenty of conditions that aren't tested for, let alone birth injury).

But as a young woman I saw my Gran worried sick about what would happen to her brother when she died, and the relief mixed with deep sadness when he died before her. She was as heartbroken as anyone else would be at losing her 'little' brother but also free of the fear that he'd be left with no-one to fight his corner. Even though my sister and I would have done our best, we didn't live near him and with the best will in the world we could never have replaced our Gran in his life. (And moving to be near us would have been deeply distressing for him.)

It's the long-term issues that would worry me, desperately. Although, not having been in that situation for real, I have no idea how I'd feel and whether I'd continue even knowing all that.

WinterOfOurDiscountTents Mon 11-Apr-11 16:33:52

Of course, but you can't not talk about them at all. I think people on this thread have been very sensitive, but its shouldn't be a banned topic for discussion.

exoticfruits Mon 11-Apr-11 16:35:56

I don't think that people can judge others. I would imagine that most people's fear isn't the baby and small DC- it is what happens if you die before the DC. I have a friend with a mentally handicapped DS, he is now in his 20's and I know that his younger sister is very worried that he will become her responsibility in later years. She is very caring and her parents have no idea that she is so worried-she hides it from them.

DuelingFanjo Mon 11-Apr-11 16:39:18

it does seem unfair that siblings are left with the burden.

exoticfruits Mon 11-Apr-11 16:44:03

I would imagine that most people are thinking the long term issues and not the baby, childhood ones. It is how do you cope with a 40 yr old when you are 80ish yourself-even if they are well looked after in a home it is a huge responsibility.

computermouse Mon 11-Apr-11 16:47:06

Message withdrawn at poster's request.

PureNewWoolWithPerfectStitches Mon 11-Apr-11 16:49:30

Personally, I would have thought that since a MNer is just going through a heart-rending decision making process and probable termination that you could have waited a few days before starting this thread to satisfy your curiosity OP.

wannaBe Mon 11-Apr-11 17:01:26

of course there are some people who find it difficult to cope with a child with severe disabilities. But reality is that you can never really know until you are coping with your child with severe disabilities, because seeing someone else's unrelated child and their difficulties isn't the same - it just isn't. For one you don't have that parental bond to someone else's child - there's even an element of that in the way people relate to their own NT children vs other peoples' children, so disability does not change that parental bond.

But the thing is, there are far more disabilities that cannot be tested for than can. So what do you do if you end up with a baby born with cerebral palsy, or one with regressive autism if you are so sure you cannot cope? Do you give the baby up for adoption at the point you feel you have reached your coping point? If your once healthy baby develops a serious illness and becomes disabled as a result, do you then give it up because you can no longer cope with it? Plenty of people felt strongly about Julia Hollander who abandoned her baby at the hospital when she was just four months old because her "d" hmm h gave her an ultimatum "it's her or me" while they drove her belongings to the dump and left her to be cared for by a foster parent.

Downs is just one in a vast range of disabilities, most of which cannot be tested for.

I am deeply uncomfortable with the idea of people that terminate multiple pregnancies because of often genetic conditions. I can absolutely see why someone might not want to have a child with Muscular distrophy, for instance, and can totally see why someone would go down the route of pre-implantation diagnosis in order to not have a baby with certain conditions (I believe MD and Cystic fibrosis can now be tested for, and there are probably others by now). I can even see why someone would terminate one pregnancy due to any other testable condition (I personally wouldn't, but obviously people do). But I think that it is wrong to terminate several pregnancies in succession, often late on, just to ensure that you get a perfect child. If the chances of passing on a certain condition are that high, it would surely be better to either not have children or use donor sperm/eggs or a surrogate than to keep going through late termination after late termination just on the off-chance you get a "perfect" child one day. I can't believe that people need to have a biological child so badly that they're prepared to abort several babies just to get the one they want.

edam Mon 11-Apr-11 17:03:36

Wannabe - I imagine that the number of people who have multiple terminations for disability is extremely small indeed.

wannaBe Mon 11-Apr-11 17:05:36

purenewwool people go through these things all the time though. It's not wrong to ask the question just because someone out there is currently struggling with the answer - it's a valid discussion.

The thread title is clear enough - people who don't want to discuss it do have the option to hide it.

wannaBe Mon 11-Apr-11 17:07:51

I'm sure it is edam, although there are several people on mn who have terminated more than one pregnancy because of ds (had encountered threads before I hid the ante-natal topic).

SanctiMoanyArse Mon 11-Apr-11 17:11:08

I think you will find very few people who would actively blame someone who terminated outside fairly rigid faith structures 9there's always some of course)

Equating blame / anger with the offence felt by the mother of a child newly diagnosed with a chromosomal disorder is a little unfair. When we read these things it can be hard not to see someone saying our children aren't wanted, and we all have the same mummy-protect instincts, Sn child or not.

Personally I feel that staying out of these debates is a mistake becuase they need input from people on the coalface (and as I had my carers assessment this very afternoon I am indeed at that coalface....) and indeed from people who ahve amde the decision; it humanises things. My own mum ahd a termination for disabiltiy- incompatible with life she was told though pre-scans so how they knew for sure I will never know (rubella)- and I know a very little of how hard that was for her, esp. as she had lost several babies to stillbirth previously.

But i think we must accept and crucially understand those who find these discussion difficult. On this occasion it has gone so well, on otehrs on Mn things have gone less so.

I would never lie about what it is to be a carer; for me anyway, some people find it an amazing thing. For me it's meant poverty, loss of a career (ironically withs truggling famillies.....), exhaustion, and at times my marriage ahs struggled to survive. DH ahs severe MH issues himself which I suspect are related to tiredness and the strains.

OTOH love answers for a lot; whilst i would wish my chidlren to be devoid of any difficuloty, I woudl never choose not to have had them. We don't have much of a family network (MIL hasn't been spoken to since she called ds1 a freak and mine are far away), but on balance i'd rather have this than not have had kids altogether.

SanctiMoanyArse Mon 11-Apr-11 17:13:43

And oh yes the other thing that does worry me is that when people have these tests so often they really do think that an all clear = a percect child: like hell does it. Fifty percent of the kids supported by the local social services now (according to SW today) ahve autism, a non testable condition. When you look at the stats DS is such a small risk comapred to the rest of it, that it is far from an all clear yet I never managed to get that across to my sister and I knwo she is not unusual as I have seen it on here.

frakyouveryverymuch Mon 11-Apr-11 17:22:54

The huge, undeniable difference between many disabilities and DS is that it's now a choice. You know what's coming - unless you refuse all testing - and therefore you are actively choosing to have a child with a disability. Some people can't do that.

SanctiMoanyArse Mon 11-Apr-11 17:28:58

Very true.

It's just that nobody can choose not to have a child with a disability and I fear some people have a false sense of security, and that should be explained better.

Shoesytwoesy Mon 11-Apr-11 17:30:11

I have avoided this thread, as tbh it is same old same old, and I can't understand why it isn't in the antenatal testing topic, BUT I just have to say I hate the word "choice" when it is used about having a child with a disability,
you can test for ds, you could then terminate, or get the all clear and STILL have a severely disabled child, with a much worse disability, but one that is untestable. what do you do then,
alos the idea that a sibling is going to be the carer, that imo an excuse for a parents decision.

Shoesytwoesy Mon 11-Apr-11 17:31:20

SanctiMoanyArse x posted with you, I agree with you

frakyouveryverymuch Mon 11-Apr-11 17:39:07

It's true you can't choose not to, but if all the testing comes back positive you're in the position of choosing to purely by not choosing not to, and then it is a choice. But an all clear for the chromosomal abnormalities which are part of routine ante-natal testing is indeed not guarantee of a healthy baby/child/teen/adult.

However even if you're going to continue with the pregnancy it's probably better to know on balance, because then you and the medical team are prepared.

smallwhitecat Mon 11-Apr-11 17:41:57

Message withdrawn

We are missing a point here..............my personal case was that they were looking out for down syndrome. Blood test was low risk, so no cvs or amnio needed, all scans were fine etc............ds was born, down syndrome, heart condition etc............no choice here.

SanctiMoanyArse Mon 11-Apr-11 17:51:49

Absolutely Devient (that sounds so wrong doesn't it LOL Peachy asociates with all kinds of devient...)

And indeed with ds3 who got the HR DS result, didn;t have it (so would have had an all clear for amnio) then had something else that quite amusingly makes him rather like another child I know who has DS............

There's no rights and wrongs and but there are also zero absolutes either.

FWIW I know a few chidlren born with a disability and abandoned, one in hospital as Dad didn;t want 'one of tehm downs kids' (my Aunt, childless through no choice and Mums' best friend, never spoke to her again)- well the ones I know have the most amazing foster aprents who adore them and great lives. We'd be better looking at social care and how it functions, esp. after carers have passed on , perhaps then people woudln;t feel so challenged by SN?

saggarmakersbottomknocker Mon 11-Apr-11 17:53:08

There's definitely a train of thought out there that thinks 'tests for trisomy clear - baby is 'fine' - when as smallwhitecat suggests that's not the case at all and baby can still be born with a whole host of other conditions. Or have a difficult birth and be in a similar situation.

I'm sort of of the opinion that if you think you can't handle a disabled/sick child then you really neeed to rethink the whole idea of having children because the truth is you don't know what you're going to get.

frakyouveryverymuch Mon 11-Apr-11 17:54:09

I don't think we are missing the point. Sometimes you have no choice, whether DS or anything else, because it wasn't picked up.

But when you get a positive test then it does become a choice and it becomes a positive choice to have the child. Some people, for whatever reason cannot make that positive choice. It's no longer the default option that you take what you're given. So for people with a positive result it does become a choice and one they are likely to have to defend. With the availability of testing people are going to ask 'did you know?' at some stage.

Others can't make the choice not to have the child, of course.

expatinscotland Mon 11-Apr-11 18:00:13

I agree, saggar.

Some of the most severely disabled people I know have conditions that could not be diagnosed at birth or appeared in or near adulthood.

sad

edam Mon 11-Apr-11 18:00:26

Sancti - one of my friends is a neo-natal nurse who tells me it's not uncommon for SCBU to be looking after a baby with disabilities who is waiting for foster care because the parents have just walked away. Desperately sad. I really can't imagine how on earth anyone can do that. In the bad old days doctors would tell people like my Great-Gran to 'put the baby away, forget about it and go and have another one' but for people actively to choose to do that, these days, when they aren't expected to or encouraged to? Horrible.

lol Sancti

As well as looking at social care, I think they should also look at the child, not the disability and provide the correct support.

needafootmassage Mon 11-Apr-11 18:06:46

At least they're being honest, and giving the baby a chance to be brought up by another family who want and love her.

Rather that than they take her home and don't love her properly.

SanctiMoanyArse Mon 11-Apr-11 18:13:26

needa sometimes; and sometimes that sn will be related to soemthing up in the aprent's own lives that inhibits their ability to parent (I am thinking a child I know with foetal alcohol syndrome who was given up at as parents knew they could not cope and fight their own demons)

But sometimes not both parents feel that way and in teh case above only Dad was admanet and Mum just went along which I think is horrendously sad and may well have been sorted if Mum ahd felt that she'd ahve been supported had she told her H to take a short walk off a long plank....

MrBloomEatsVeggies Mon 11-Apr-11 19:16:56

I find it curious that people have such heated debates over whether or not to terminate due to DS dx.

Terminations are carried out daily on perfectly heathy foetuses, for a variety of reasons, some of them ridiculously flippant. Isn't this just as wrong/right?

My MIL was child protection officer in a residential home and dealt with the extreme end of DS. They were not happy, vivacious, smiley, fun-loving people. They were extremely violent, aggressive and non-verbal.

The spectrum of DS is vast, as people have pointed out. You might be lucky and have a picture perfect, high functioning, loving child with DS. You might not.

It's a difficult decision, whether to terminate. It's a decision that I have been extremely lucky not to have to make, and I quite honestly don't know which route I would have taken.

In response to the OP, I would imagine it's because of fear for the future, and it's not always a bed of roses.

computermouse Mon 11-Apr-11 19:39:18

Message withdrawn at poster's request.

Purenewwool - your post is out of order imo. Is the op supposed to search every area to check first and seize her moment? As wannabe said - there is nearly always someone going through this. Talking about it is so important because a lot of people don't think about it until they're faced with the 'do I have the tests question' and then it's much harder. If you are facing this situation then I'm pretty sure that opinions expressed here aren't going to sway you - nothing here is meant to pertain to a particular ongoing situation.

sungirltan Mon 11-Apr-11 20:27:19

'people are kidding themselves if they think that a termination for disabilities is not a reflection of how they personally feel towards people with disabilities. Of course it is. It's a very nimby message - it says "well yes, of course there are people out there with disabilities living their lives, I just don't want them in my life."'

that is such rubbish. my mother was a sn teacher for 30+ years. she dedicated her career to working with children with high support needs, shunning promotion over and again because she just wanted to be with the kids and get on with it. sn teaching is bloody hard work, often thankless and more often than not heartbreaking as it deals with health regression, degenerative conditions and death. i think teaching a child to tie their shoes or write their name, knowing its unlikely they will live beyond their teens or even the end of the school year takes a lot of strength and compassion.

my mum was pregnant with me at 36 and knew it was probably her last chance to have a baby (i am her only child). she demmanded the amnio (this was 1979) and was given on the condition she would terminate if it was positive. her reason was 'i have seen so much, i have seen what those kids go through (all children with additional needs, not just ds), i just cannot bring a child in to the world knowing that life will always be a struggle, i can't put a child through that just because i want a baby'

i think those that terminate ds children make very informed decisions, theres no ignorance about it.

i also agree with winterofthediscounttents - of course this is a difficult subject and i'm also sorry for any offense but come on, this is mn - surely this is a safe place where we can talk about taboo subjects?

SpeedyGonzalez Mon 11-Apr-11 20:29:34

I had amnio because I wanted to know if my child was going to have Down's so that I could prepare as much as one can for how it would have changed our lives.

I think the OP is asking a very good question. We do all assume that our children will be born 'perfect'. Obviously perfection doesn't exist, and so all of our children will present huge challenges at some time in our lives. But I think many people have the impression that the challenges posed by a child with a disability are far harder to deal with. I know I do, and when I read threads/ blogs/ articles written by people whose children have special needs, it affirms this belief. Like parenting any child, it's immensely rewarding and fun, but I think it would be wrong to say that it's not also incredibly difficult.

sungirltan Mon 11-Apr-11 20:48:21

i dont think its about babies being perfect - i think its about risk reduction andi dont think thats wrong

SanctiMoanyArse Mon 11-Apr-11 20:56:34

' But I think many people have the impression that the challenges posed by a child with a disability are far harder to deal with. I know I do'

Interesting and valid point

FWIW I have two with ASD and whilst one I would say hell yes, the other not so: he is a joy. Interestingly the more severe is the easier to enjoy, but that's an accident of personality.

As for teaching kids with Sn- yes I think you need to want to do it; I do, one day a week ATM but want to do it FT when I can (then I might be paid LOL). It's something I like immensely but there's a million jobs I would hate so swings n roundabouts. I would not follow your mum's path (and note I have two with sn of my own- not DS, though have worked 1-1 with an adult with severely behavioural issues and DS- so kmnow some of it). But that again is each to their own isn't it?

In my case certainly it is not the behaviours of the boys- those are a PITA but can be lived with- but the bureaucracy that is hardest. Something society could actively do something about.

mamalino Mon 11-Apr-11 21:02:36

'people are kidding themselves if they think that a termination for disabilities is not a reflection of how they personally feel towards people with disabilities. Of course it is. It's a very nimby message - it says "well yes, of course there are people out there with disabilities living their lives, I just don't want them in my life."'

I couldn't agree more wannabe. And it is fucking hurtful to people with SN/parents of children with SN.

People might as well just say 'Yeah, I want children, not one like yours though'.

SanctiMoanyArse Mon 11-Apr-11 21:04:56

Hmm, I think often it is a reflection of that but not alwys.

I know people caring for a very severely disabled child who had the tests as they knew they woudl struggle with 2 Sn kids- they'd manage if they ahd to but it would be stupendously hard. They loved their first child though.

OTOH you get people like my sister who will openly say in front of my boys (DS1 understands his ASD) that she doesn't want a faulty one.

WinterOfOurDiscountTents Mon 11-Apr-11 21:09:06

It's really not as simple as that.

SanctiMoanyArse Mon 11-Apr-11 21:10:20

What's not? Nothing is simple in this debate is it?

DuelingFanjo Mon 11-Apr-11 21:11:39

"We do all assume that our children will be born 'perfect'"

we don't. I have a relative who was disabled at birth and lives a very independant life but that still wouldn't mean I personally would want a child with Downs - the tests are there (amnio etc) and I wanted to have them.

RE the blogs, at the risk of offending people there's nothing I want to read less to be honest. People do tend to send links to them but I have no interest in reading them.

wannaBe Mon 11-Apr-11 21:17:30

but ultimately, people have hopes and dreams and aspirations for their (usually) planned babies. And then when a test shows that that baby has certain disabilities (I am not referring to conditions that are incompatible with life here as that is entirely different) those hopes and dreams and aspirations change. How does a baby go from being planned and wanted to unwanted in the space of a test?

It just seems so sad that the reasons given are so rarely about the child. "I couldn't cope; it's not fair on the siblings; someone will have to look after it" what about the baby in all this?

Computermouse yes I remember that ghastly woman. Afaik she shares my first name <shudder>.

DuelingFanjo Mon 11-Apr-11 21:20:22

that's what pro lifers would say. personally I am not pro-life.

wannaBe Mon 11-Apr-11 21:29:03

SanctiMoanyArse I can see why someone who has a child with disabilities might not want another with disabilities.. I personally know people who have actively chosen not to have any more children for this exact reason - I have a neighbour whose ds is severely autisticand she A didn't feel she could cope with another child (at all actually) and B didn't feel that she could cope with another baby who might possibly regress as her ds did. And actually in contrast to the people who wouldn't have a disabled child because of their able-bodied siblings, she didn't feel having another baby would be fair on her existing disabled ds as she felt that due to his sensory issues a crying baby would upset him.

When I was seven my mum terminated an unplanned pregnancy because she didn't want another disabled child. There was no knowing that the baby was going to be disabled - she just wasn't prepared to take that risk. She'd always known that was how she felt - so wtf didn't she go and be sterilised earlier on?

I imagine that many of the children of people that make these decisions don't have the capasity to understand the concept of a parent having a termination because they don't want another baby like them. But I can tell you from personal experience that the impact of knowing that someone terminated a pregnancy because of me is severe.

MrBloomEatsVeggies Mon 11-Apr-11 21:36:02

'But I can tell you from personal experience that the impact of knowing that someone terminated a pregnancy because of me is severe'.

It wasn't because of you, Wannabe. She made that decision for herself, and her reasoning was poor in the extreme.

Don't carry the guilt for someone else's choice. She had no right to blame you.

DuelingFanjo Mon 11-Apr-11 21:41:43

Wannabem what on earth posessed her to tell you something like that?! She should never have told you.

sungirltan Mon 11-Apr-11 22:11:16

i'm sorry but it isnt like that. people stop having children at what they think is their capacity whether they have 1 or 6 children - even if they are all nt. obviously the best case scenario is preventative birth control but accidents happen. if aborting a ds child is wrong then aborting all babies is wrong full stop.

i think terminations are very hard emotionally but they are always the best decision if there is any doubt over whether that child can be accomodated for all reasons

wannaBe Mon 11-Apr-11 22:19:38

df she's one of these "we don't have secrets in our family" types which in theory is great but in practice means that nothing was beyond discussion including telling your seven-year-old that you're pregnant and going to have a termination and why.

Tbh I don't really think I grasped the reality of the reasoning until I was older but I certainly knew what was happening because I distinctly remember telling a friend at school that "my mummy is having a baby except she doesn't want it so she's going to the hospital and they're going to take it away."

I suppose different people have different levels of what children should and shouldn't be told. But I know that looking at my eight yo ds now I can't imagine the reasoning behind telling a child that young something they clearly couldn't comprehend in its entirety.

Shoesytwoesy Mon 11-Apr-11 22:27:46

sungirltan what an awful post

CoteDAzur Mon 11-Apr-11 22:32:30

Why "awful"?

sungirltan Mon 11-Apr-11 22:34:05

yes why? no skin off my nose if you think i'm wrong - own your own opinion but explain why?

thefirstMrsDeVere Mon 11-Apr-11 22:48:40

I didnt have tests for DS or anything else in my last two pgs (in my 40s) because I knew there were far worse things in life than having a disabled child.

But that was mine and OH's personal choice.

I am puzzled at the targeting of Downs Syndrome. It seems to be almost an obession by the medical establishment.

I work with lots of babies with Downs. Most were dx after birth to younger parents. They are all beautiful and a joy to work with but they are all very different and have different problems.

Its not all smiles and cuddles.

Yellowstone Mon 11-Apr-11 22:52:32

Even though I saw babies abandoned because they were disabled when DD1 was in an American Neonatal Intensive Care comparable to Gt. Ormond St., I still honestly hadn't a clue what to do when waiting for DD3's amnio results after a very poor indicator from the blood test. I closed the curtains of my house on an army patch with all the other wives muttering about what might be wrong and I hoovered the carpets into oblivion for three weeks waiting for results, unable to see how I could terminate but not knowing how I could land the responsibility of a disabled child with my two DD's after I'd gone. I think instintively I knew I couldn't terminate, but the feeling was desperate, so many conflicting emotions. I really don't think it's possible to imagine the difficulty until you're in that position yourself. I hugely admire a mother I know, staunch Catholic, who never had scans on the basis that she would never have terminated whatever the outcome. Those weeks were desperate and when I got the definitive results after what seemed a lifetime (no DS), I still hadn't come to a decision, the emotional was still locked in battle with reason and I was just so glad to have the decision taken out of my hands.

CheerfulYank Mon 11-Apr-11 22:52:45

Honestly I don't know why people do. DH and I plan on adopting a little one with DS at some point through Reece's Rainbow

My little cousin (he's 7 now) was my aunt's sixth child. She didn't have the tests and had previously had five healthy children, so it was a bit of a surprise when our Ben was born with DS, diabetes, something called Grey platelet syndrome...but he's ours. Our boy, and at the end of the day they just got on with it. He's a joy, and very healthy now.

It is hard to think of your children having to care for a sibling, but who says that's not going to happen anyway? My brother could be in a horrific accident and require care for the rest of his life, and I'd do it in a second. It's what family does, IMO.

So frankly, I don't understand it. But I'm also shocked at people who abort a twin because they only want one, or abort because of the wrong gender. You can't order your children off a menu FFS.

Shoesytwoesy Mon 11-Apr-11 23:02:52

sungirltan Mon 11-Apr-11 20:27:19 that was the post I was talking about, I read it and thought it was a negative attitude by someone who should have cared.

Yellowstone Mon 11-Apr-11 23:04:08

Cheerful I think it's the forewarning of a disability which creates as many problems for some people as it solves for others.

If your brother was disabled in an accident, that's different because you have no opportunity to decide on an outcome different from one that fortune presents you with.

My cousin was DS and adored and cherished for 49 years but it was the knowing that my DD3 was at high risk of being DS and that this would inflict a burden on others whose responsibility it shouldn't be and that the whole situation was avoidable, though only in the most ghastly way - that was the problem.

For some people more religious than myself, it might be straightforward. I struggled.

CheerfulYank Mon 11-Apr-11 23:07:44

Right...I decided not to do the tests with DS because it wouldn't have made a difference. Next time I will get them, because I'll want to have early intervention services lined up as soon as possible!

I think it's unfair to assume it's all about "wanting a perfect family", I do think many people have reasons going far deeper than that. But I do know, because they have said it to me, that some people just feel it's "not in the plan." Nothing about children, in my experience, is ever in the plan, so I sometimes wonder how they'll cope even with NT children.

CheerfulYank Mon 11-Apr-11 23:14:50

I'd want to, I mean. If I were to have a child with DS.

sungirltan Mon 11-Apr-11 23:15:18

shoesy - you have read it but you are choosing not to understand. it was about someone who cared deeply.

i always feel hesitant about posting my own anecdotes on this kind of thread because they always get ripped apart and discounted (i mean everyones not just mine personally). everyone's own experience and conclusions are equally valid.

i could post post reams 'proving' my mother is a caring person but that wouldn't make my points any more or less valid than the next person.

SpeedyGonzalez Mon 11-Apr-11 23:22:11

In general, in life, I think many people surprise themselves by how much they can cope with. I know it sounds flippant in the context of this convo, but as an example, I never thought I'd be able to cope with labour and birth (I turned out to be a veritable birthing Amazon grin).

It's impossible to imagine what life will be like with a child with SN, though talking to parents whose children have the disabilities which your unborn child has is a good start. I'd also hope that that would encourage a parent-to-be to see themselves as someone who could bring up a child with SN.

SpeedyGonzalez Mon 11-Apr-11 23:35:32

'Perfect' in inverted commas, sungirl. Most people don't assume their child will have a disability/ deformity/ any other feature that makes them appear less than 'perfect'. But as I said earlier, this is nonsense because perfection is a fantasy.

I also agree that it's odd that Down's is singled out like this. Though the quad tests do also check for Edward's and Patau's syndromes, but unlike Down's these are generally life-threatening and give a child little more than an agonising couple of days of existence sad. So they're in a different category, IMO.

SpeedyGonzalez Mon 11-Apr-11 23:37:08

Though I think ultrasound screening shows up a lot of other birth defects which wouldn't be discussed if they weren't present...So perhaps there's not quite so much anti-Down's bias as we thought.

startail Mon 11-Apr-11 23:39:49

Because I believe it is morally wrong to bring a child into the world that doesn't have the best possible chance of being able to cope with what the world will throw at them.
Also I'm a selfish, impatient, intellectual snob who no ds child deserves as a mother

sungirltan Mon 11-Apr-11 23:41:03

speedy - yes to 'perfect' NT is a better term i agree.

i dont think there is any 'anti ds' in particular - surely its only singled out because you can test for it. you can also test for SB too but is that a different discussion because its harder to argue how cute and cuddly and permanently happy SB children are?

sungirltan Mon 11-Apr-11 23:42:09

startail - 'Because I believe it is morally wrong to bring a child into the world that doesn't have the best possible chance of being able to cope with what the world will throw at them. ' yes exactly, this is how i feel too

CheerfulYank Mon 11-Apr-11 23:46:32

So where does it end, then? What if they can identify the genes that cause obesity, gayness, crippling shyness, dyslexia, a complete lack of ambition for heaven's sake? All of those things make a person not "have the best possible chance of being able to cope with what the world will throw at them."

I thought we'd all agreed eugenics had fallen out of favor...

CheerfulYank Mon 11-Apr-11 23:46:59

can make a person, I should have said.

SpeedyGonzalez Mon 11-Apr-11 23:52:27

Quite, CheerfulYank.

Startail, children frequently try our patience. Fact. So to have a happy family life, you're going to have to tackle at least one trait on that list! grin. Possibly all of them - what if your child became an Elton John when you'd been gunning for a Mozart? I jest, but there is truth in my teasing.

sungirltan Mon 11-Apr-11 23:54:59

cheerfulyank - well right now it ends at testing for ds/sb and those other two mentioned up thread (i dont have a correct list). theres been testing for these conditions for some years now and it hasn't snowballed

BeakerMeep Mon 11-Apr-11 23:57:32

I hate these threads.

Lets get rid of 'them' at birth'. FFS

What on earth would people do if their child was in a RTA and developed brain damage? Or got meningitis and subsequently acquired a disability?

CheerfulYank Tue 12-Apr-11 00:03:28

Yes, right now it ends at testing for Down Syndrome...

sungirltan Tue 12-Apr-11 00:06:04

yes beaker, its a well know fact that all parents who considered terminating fall apart at the slightest damage of their dc. put like that theres no point in using a pelican crossing because the car might not stop anyway....

SpeedyGonzalez Tue 12-Apr-11 00:08:30

Beaker - I was thinking the same. I know a lady whose son was beaten up at school and left brain damaged. sad

WinterOfOurDiscountTents Tue 12-Apr-11 00:13:39

whats with the hyperbolic extensions? What has acquired brain damage got to do with ante-natal testing? Do you have to turn a discussion into pointless rhetoric because you don't like some of the opinions on it?

hmm

BeakerMeep Tue 12-Apr-11 00:17:18

It's not pointless. Your child could have an encounter (physical, viral etc) that could lead to the very same issues that DS could.

What would you do then?

I'm sure the answer would be to care for them in the best possible way?

BeakerMeep Tue 12-Apr-11 00:18:39

So why not continue with a PG because that same child is facing the same, but just before it has been born?

sungirltan Tue 12-Apr-11 00:20:52

yes, but

yes, but

yes, but......................

fgs disabilty through misfortune and or aquired brain injury is just as likely to occur as not.

we take preventative steps against risks all the time. vaccinations are a good example. is it not worth vaccinating because there are so many other diseased which cannot be jabbed against?

sungirltan Tue 12-Apr-11 00:22:04

why is it seen as so odd to plan for situations which are within our control?

CheerfulYank Tue 12-Apr-11 00:24:44

That's not as relevant as the "your child could have a brain injury" point, IMO.

duckypoo Tue 12-Apr-11 00:33:54

I don't know tbh, it's such a leap of faith having a a baby, you should be prepared for any eventuality. I read something awhile ago that featured a list of conditions "allowed" for in late terminations, it included cleft palate fgs, please do correct me if I am wrong, I may have been reading a dodgy source.

I have worked in an acute medical ward and cared for those with terrible difficulties caused by downs, mostly blue, requiring 1 to 1 care ect, still I could not terminate.

It's my view only and I am pro choice, but even if my baby had a fatal abnormality I would rather the child died naturally or I gave birth and at least got to hold them. I avoided the hassle by not having testing, apart from my first, there it was an opt out test and I was naive.

Ok I'm not going to pull punches, it's my view and I'm entitled to it, I think it's wrong to terminate babies because they have a disability/are less than perfect. I do agree that terminations are sometimes necessary, where having any baby would be a terrible thing.

But the whole weeding out of the less than perfect, meh.

If they could test for autism in the womb, I'm sure a lot of people would terminate. However I was watching a physics prog on bbc4 the other day which described a Man who made huge advances in theoretical physics. By the description of his early life he was glaringly autistic.

The world needs variation, not perfection.

expatinscotland Tue 12-Apr-11 00:43:20

'Also I'm a selfish, impatient, intellectual snob who no ds child deserves as a mother'

hmm

Charming.

CheerfulYank Tue 12-Apr-11 00:48:57

<stands shoulder to shoulder with duckypoo >

edam Tue 12-Apr-11 00:56:50

duckypoo, have you ever read any of the heartfelt posts by people who have actually faced the agonising decision about whether to terminate for conditions incompatible with life? Only your line that "even if my baby had a fatal abnormality I would rather the child died naturally or I gave birth and at least got to hold them" sounds rather glib when I recall what people who have actually been in that situation have said.

expatinscotland Tue 12-Apr-11 00:57:32

My personal philosophy has always been that it is not my right to decide if someone else's life is worth living. It's their's same as it's my choice is my life is worth living, hence, why I support assisted suicide. Who am I to decide a person's life isn't worth living because they are disabled?

duckypoo Tue 12-Apr-11 01:06:35

I have read them yes, I feel a lot of sympathy towards them, it's an agonising decision, I don't judge people. However I know my own mind, I could not knowingly end the life of a child whose heart was beating inside me I just could not.

It may be from reading about abortion methods ect, but I doubt it. I just could not actively take the decision to end another persons life. I recognize that it is necessary for other people, I have even been in the hospital toilet when my lovely friend went through with an abortion. I supported her I agreed with her decision, but I am still entitled to my views.

frakyouveryverymuch Tue 12-Apr-11 06:01:54

ducky isn't the first on this thread to have said that, although possibly in not so much detail. It must be a horrific choice to make - I'm unutterably relieved that so far it hasn't fallen to me but if it did I don't believe I would terminate either, although the idea of carrying a baby only for them to die in pain shortly after birth makes me sick to my stomach. So although there are those of us who wouldn't it doesn't preclude an understanding of the reasoning behind the actions of those who do/did/would.

exoticfruits Tue 12-Apr-11 07:39:41

So although there are those of us who wouldn't it doesn't preclude an understanding of the reasoning behind the actions of those who do/did/would.

Very true. Don't judge a person unless you have walked in their shoes. I am very grateful that I have healthy DCs and haven't had to make agonising decisions. I have had tragedies in my life and the one thing that it has taught me is that although you can imagine what it feels like you can't know -until it hits you-and it is very different when it actually happens.

goingdownhill Tue 12-Apr-11 08:12:35

I am in the unenviable position of being the mother that has faced this situation very recently. I can honestly say you have no idea of the choices you will make until you are faced with them. You would be amazed how quickly certainties change when it is a reality, for me it was the opposite I discovered that I could and would have any child with the ability to live a pain free life with some understanding of the world around them. If you had asked me 7 months ago I would of thought my criteria would of been different.

My daughter had 3 separate major brain abnormalities the prognosis for her was terrible she would have no more brain function than that of a new born, she would of had constant seizures and would be very unlikely to survive until the age of 2 at the most.

We took the decision to terminate. It is quite frankly the worst thing I have ever done or ever lived through. She is my fourth child and it is a huge hole in our family to not have her with us.

In our situation all the testing we had done was to give us the hope to keep going, her conditions were so rare it took a very long time to diagnose. Every amnio, blood test that came back clear allowed us to hope that maybe we could continue, maybe the outcome would be ok for her. For us it was the foetal MRI that bought our world to an end, when it showed huge patches of her brain missing and damaged. Testing is not always used as a reason to stop but a reason to keep going.

I can say with truth that I did what I did out of love as hard as that might be for someone who has not been there to understand. I could not allow a child of mine to live a very short life filled with pain and suffering. I have a child that is not NT so I am not striving for "perfection" my DS1 is not NT and is absolutely perfect to me.

I just want people to realise it is not a case of this baby not being good enough then moving on with your life. I am three months down the line from my daughters birth and I have PND and am on AD's. I spend sleepless nights going over and over this in my mind trying to find the answer in my mind that all this could of turned out differently. Every time I sob and cry because I want my baby back I always come back to the same point that if we had taken the other path it would be Alexandra who would be suffering and in pain now. As her mummy I feel it is my job to take on the agony and let her be at peace.

thefirstMrsDeVere Tue 12-Apr-11 08:13:52

Having held my child in my arms as she died I think I am somewhat qualified to say that yes I would rather give birth than to terminate.

I would rather have the baby and hold them and cherish them for those short hours/days/weeks.

But again that is MY personal choice.

I cannot bring myself to judge others for choosing to terminate a pregancy when they have been told what might lay ahead.

You learn a lot when you nurse your terminally ill child.

sungirltan Tue 12-Apr-11 09:33:35

goingdownhill - huge anti mn hugs and thank you for posting x

it seems on this thread that the parents who would consider terminating have passed no judgement whatsoever on parents who wouldn't but not the other way around which i think is sad.

goingdownhill Tue 12-Apr-11 09:44:16

thank you sungrirltan. It is very kind of you to say that. All I am trying to highlight to people is that I don't always think that life at any cost is always kindest to the baby. Yes I could have gone forward and watched her struggle then die anyway. I really truly cannot understand why that is seen as a kinder choice. It would of course be an individual choice for any family that finds themselves in this hell.

I had a fantastic Paed during all this and she said to me sometimes the hardest part of her job is to let parents understand when it is time to let their child go. As a mother to allow your child to die is something that goes against every fibre of your being.

thefirstMrsDeVere Tue 12-Apr-11 09:51:55

That isnt true though it is suntan?

I have seen your story before going and it is very moving and its important that you have a chance to put your story across.
I am sorry that you are having such a difficult time. You have lost your child and I know that pain too well.

You are welcome on the bereaved parents board x

goingdownhill Tue 12-Apr-11 09:59:55

Thank you Mrs DV I know we have spoken before when I was really quite mad and you were very kind. I would never post on the bereaved parents board as I am aware there are so many people who think this is my choice. As threads like this never fail to highlight.

thefirstMrsDeVere Tue 12-Apr-11 10:03:43

We are not like that over there going. Honestly.

But I understand your reticence. As far as I am concerned you lost your DD the same as I lost mine. They may have been on the opposite ends of their childhood and they may have been lost for different reasons but in my opinion that doesnt make any difference. The pain and the guilt and the big hole they leave behind is the same.

x

DuelingFanjo Tue 12-Apr-11 10:08:23

goingdownhill, so sorry to hear of your experience.

frakyouveryverymuch Tue 12-Apr-11 10:11:39

I don't think that's true, suntan. A life-limiting/threatening diagnosis is Hobson's choice. I don't judge people who terminate even though personally I feel that choice isn't open to me. In fact I sometimes wonder whether that makes me the coward, and I agonised for ages waiting for test results to come back and before scans about how I would feel if something was seriously wrong with the baby because I could conceivably be putting my beliefs above the wellbeing of my child.

Sometimes the person who takes the decision to terminate may be the stronger one.

CheerfulYank Tue 12-Apr-11 11:00:33

Goingdownhill, I am very sorry to hear of the loss of your precious DD. You're right, no one can ever know what choice they would make in your situation. You acted as a mother, wanting to spare your daughter pain, and I'm very sorry if any of my posts were seen as judgmental toward someone in your agonizing situation.

My point, which I may have made rather badly, was that DS is an entirely different thing to some diseases. People with DS can and do live long, pain free lives. (The life expectancy for people with DS is now pretty close to average, if I'm not mistaken. The oldest living person with DS is in his 80's and actually lives in my state. He was born at a time when people with DS usually didn't see their tenth birthday.)

goingdownhill Tue 12-Apr-11 11:12:34

Cheerfulyank thank you for your kind words. I was not trying to guilt anyone. I only try and give a perspective from the other side.

I understand the original OP was in reference to DS and of course this is the situation most people were answering. I of course understand people have the right to disagree with termination I just try and show that it is not always done from a point of view of not wanting a child but from a position of alleviating suffering.

CheerfulYank Tue 12-Apr-11 11:24:50

Yes, definitely. I hope you find peace knowing that you spared your little girl pain.

Having recently lost our daughter (stillbirth) I can say I would not terminate for ds, but then I've always held that view. Nothing in my life has been as hard as the past few months since we lost Scarlett and I've a lot of bad things to go through as it is.

Fwiw goindownhill I think you made an incredibly brave decision and I wouldn't liken your situation with that of ds, totally different imo.

SanctiMoanyArse Tue 12-Apr-11 11:57:33

'If they could test for autism in the womb, I'm sure a lot of people would terminate. However I was watching a physics prog on bbc4 the other day which described a Man who made huge advances in theoretical physics. By the description of his early life he was glaringly autistic.

The world needs variation, not perfection.
'

It's unlikey to happen as a test anyway- we now talk interms of autisms (multiple causes) as oppsed to autism when discussing aetiology.

Hugely agree about variation.

The person who included intellectual in their criteria for not continuing a pregnancy affected by disability- why? I know many intellectuals I would place on the spectrum, to varying degrees (think Temple Grandin for a start, then my Aunt who ahs a first from LSE in Economics and two kids with asd- both studying at uni- one with support, chemistr and one doing medicine).
I am not sure I am dim; not exactly yer bog standard intellectual perhaps but doing well at post grad, was asked to consider Phd but too many caring responsibilities atm.

Selfishness OTOH- yes, probably the one characterisitc that makes caring a bad choice; in extreme amounts anyhow.

goingdownhill- hugs. I am sorry for your loss and I hope life brings you happiness soon. Mrs Devere- heck we know each other anyway but <<hugs>>

JemimaMuddleFuck Tue 12-Apr-11 11:57:37

With my last DD I came back with appalling "odds" for Downs. I was an older mother etc.

I had about a week/10 days before the amnio to think about the implications.

My main concern was not the syndrome, but the implications for the child's life when I was "gone".

A child is for life; but with "normal" children there is an expectation for a fully independent life in the normal course of events when the Parents' die.

There is not such certaintity with a child with Downs. Ensuring care should the Parents decease the child is a massive concern.

I didn't have the amnio as I thought it irrelevent. I was bonded to my baby; and knowing one way or the other would not have changed what I felt.

At the same time. I went through a massive overhaul of fiscal and practical arrangements; and found that I was sadly lacking in arrangements for my extant children; should I have died; never mind a further Child with additional needs. It stuck a rocket up my arse.

In my NCT group was a midwife, (she enrolled for the sake of her husband who was a plumber; and she told no-one that she was a midwife until our course finished) who whilst much younger, had similar initial results to mine.
She had the amnio and then a "Nuschal scan"; (sorry it was new/cutting edge at the time and it's an age since I've had a baby, so it might be the wrong "name" for the procedure) She then aborted the child.
She was pregnant again within about 5/6 weeks (not sure) but rejoined the group and the next one by account.

Her grief was very cruel; she rang me often. She continously asked me why/how I could carry a potentially "deformed" baby. I couldn't answer her; I just let her rant.It distressed me greatly. I was made to feel like the village idiot at NCT when this came "out". I even overheard one member saying "Jemima had a long labour because she was too scared to see what she might give birth to"

I was satisfied and happy with my choice once I had addressed the practicalities

My daughter was born without Down's. I am entirely grateful that I didn't take the options that were offered to me (at the time).

ReindeerBollocks Tue 12-Apr-11 11:59:40

DS has a medical condition which we could have terminated for (not DS)- except he was diagnosed at birth.

I always struggle with these scenarios as there are two sides - how the parents cope and the quality of life for the child.

Personally my son has endured multiple surgeries and more hospital stays than I can count ( I lost track after the 23rd visit before he was 2) and honestly it's heartbreaking. My son has been put through so much and he is now of an age of understanding so he knows we have to put him through this.

It's not about DS specifically but all disabilities - I had an option to test with DD and decided that I couldn't bring another life into the world knowing it would be faced with pain and suffering, which is different to if something happens after the child is born.

The problem with DS is that the spectrum of suffering is wide ranging and what one family would deem easy, another would struggle with. So it is always more difficult to fully know each situation.

Having said that I still wrestle with this, as despite all my sons suffering he is able to live a good life, adores Dr Who and has a mutitude of friends who adore him. I couldn't and wouldn't want to imagine life without him. I just am worn down by the guilt of his illness.

SanctiMoanyArse Tue 12-Apr-11 12:01:05

Jemima your treatment was appalling; whilst i get that other woman had grief to deal with, I hope youn spoke to the NCT people and her manager (given she will ahve been asked to handle cases where baby was hr or guaranteed to be disabled).

I had ds4 knwoing that some people (inexact science) would give us odds of 80% on him having ASD. No wonderful stats beating ehre: seems he certainly has some AN, the nature of which will emerge as he grows. I can't imagine how hard it would have been dealing with her as a MW.

goingdownhill Tue 12-Apr-11 12:51:11

Cheese, I am so sorry for the loss of your daughter. It is a truly terrible for thing for you to have to go through. I know that words are useless. I always remember your daughter Scarlett as she and Alexandra share the same middle name. Sending you lots of love xx

Mishtabel Tue 12-Apr-11 14:16:32

Message withdrawn at poster's request.

thefirstMrsDeVere Tue 12-Apr-11 14:36:24

Honestly? The only thing that really worried me about the possibility of having a child with DS in my last two pgs (40 & 43) was the higher risk of leukemia.

The thought of going through that again was too much to bear. But It was not enough to make me have the tests.

I find it difficult when people are very understanding re termination but only if that pregnancy would result in a disabled child.
My judgement is only ever for our society not for individuals and I would support any of my friends and family if they had to go through this. They would never know how I felt, I wouldnt discuss it with them. Infact my closest relative has been through this and all I can feel for her is sympathy and love.

I adopted a child that I knew had a significant risk of disability. He was 8 weeks old when I met him we had no idea how affected he would be or if at all. He is somewhere in the middle. He didnt have cerebral palsy but he has got ASD (very interesting about the discription 'autisms' Sancti) LDs and various bit and pieces.

How could I then go on to terminate any further biological children?

This is all personal. Its very complicated because my life has been very complicated lately.

I do not think people take these decisions lightly. I cannot imagine they are easy or simple.

I wonder if changed attitudes to disability [in wider society], particularly those affecting cognitive ability, terminations for DS would be so high?

BobbiDazzler Tue 12-Apr-11 14:40:22

There are probably all sorts of reasons, so best not to speculate unless you are faced with that decision yurself, I'd say.

i know that for me, I may well have terminated my first pregnancy if I'd have thought the baby would have DS - out of sheer terror and yes, probably out of some sort of misguided longing for a 'perfect' baby.

Now, after having had two miscarriages and two children - one with autism (which there is no antenatal test for) and one NT child - I would still feel very torn. I know I would love and do my very best to care for any child of mine, whatever their issues. but I also know how much hard work is involved in looking after a child with SN, and I know that, realistically, caring fo a DS child is a lifetime commitment that would impact massively on my existing family.

hard, hard decision.

manitz Tue 12-Apr-11 15:35:18

i have terminated two pregnancies. the first was for a hypoplastic right heart and was at 6 months. The second was for downs syndrome at 13 weeks. The baby with downs syndrome also had a cystic hygroma (also referred to by mw as hydrops). Indications were that the baby was unlikely to be born alive, although we spent a lot of time researching life with downs syndrome, the overriding reason for terminating that pregnancy was my great fear of losing a baby late in pregnancy as I had found it very traumatic. In my view the earlier it happens the less painful for all.

for what it's worth my sister was hit by a car as a child and lost around 95% of her brain. she lived for 9 months following the accident. If that happened to one of my children I would do as my parents did and ensure her life was as stimulating as it could be and plan financially for her potential future. As I would if I gave birth to a child with any syndrome or disability. I just couldn't personally choose to knowingly go through that.

My choice was informed by my life experience, I don't think it's about perfection.

thefirstMrsDeVere Tue 12-Apr-11 16:25:19

I am sorry manitz. My lovely sister had to make the same decision re cystic hygroma. It was connected to Turner's in her case sad

LesAnimaux Tue 12-Apr-11 17:47:53

goingdownhill Tue 12-Apr-11 08:12:35
" As her mummy I feel it is my job to take on the agony and let her be at peace."

goingdownhill, I'm so sorry you about your experience, your post has made me cry, and the last sentence explained an awful lot to me. Thank you. x

I feel awful for anybody who has terminated a pregnancy, I imagine it must be horrendous, hence my question in the first place. Thank you all for not eating me alive. I really have learned a lot from this thread.

DuelingFanjo Tue 12-Apr-11 18:34:23

"I am entirely grateful that I didn't take the options that were offered to me (at the time)"

Jemmima, what was offered to you at the time, apart from the amnio which you turned down?

I think the midwife at your nct group would have had a nuchal scan then an amnio, there's no sense in having it the other way round.

Do you know what really gets me, is how some get sympathy and others get nothing!! Sorry having a bad time at the mo and don't disagree with people getting support. However I was remarked upon something I said earlier by someone hinting down syndrome wasn't as bad as say edward syndrome, then out came facts. After saying I have also been through 2 horrendous pregnancies and loosing a baby I get nothing!!

FWIW after having been through the scenario of wanting to keep a baby no matter what and the horrendous way I lost the baby boy with multiple disabilities/problems, then going on to have a son who I had tested antenatally so as not to go through it all again, knowing I would terminate, for them not to pick up on the fact he was down syndrome with major heart implications etc says it all.

I personally would never judge anyone for doing what they feel is right for them, at the end of the day it's only the ones making the decision who has to live with the consequences.

sungirltan Tue 12-Apr-11 18:44:34

goingdownhill - you're more than welcome

frakyou - that must have come out wrong on my part because i very much agree with your sentiment that in some cases it takes more strength the let a child go

on thw whole though i don't disaprove of abortion for any reason. i beleive every child deserves at the very least to be 100% wanted and accepted by both its parents. any less than that and ethically, a temination is the right option.

i think there is a huge misconception that those who/those who would consider teminating for birth defects are thinking on,y of themselves whereas i'm pretty confident they ar much more likely to do with the quality of life of the child in mind

DuelingFanjo Tue 12-Apr-11 18:44:40

Devientenigma, did you have an amnio?

I think it's really important for anyone who just has a nuchal scan to realise that it's never conclusive and they could be the one in however many to have a child with one of the chromosonal disorders.

Sorry to hear about your loss.

goingdownhill Tue 12-Apr-11 18:48:16

Devient. I am so sorry you are struggling and having a bad time. I think I can understand in a small way. As I have posted earlier lost our daughter 3 months ago. My DS is on the ASD spectrum though we are still swimming against the tide to find out the exact extent of his problems. I know this is nothing compared with the level of issues your son has. It is exhausting and draining trying to constantly fight for the correct support, education understanding. I can only imagine with what you have said about your son that for you it is a 1000 times harder.

I am sending you a huge hug. I am sorry if you felt ignored on this thread. I think sometimes a lone voice gets lost.

I think I am so pathetic at the moment people respond for fear I will sling myself under or bus.

I wish both you and your son lots of love. x

goingdownhill Tue 12-Apr-11 18:49:20

a bus even doh!

missymarmite Tue 12-Apr-11 18:53:07

Having worked with children with DS, I now realise that many of them can have happy fulfilled lives. Before working with them I would have had the same, unfounded fears about their lives not being worth living etc...

I actually find many people with DS to be the most happy and content in life, because they just accept it as it is. I am not saying it is easy though, being a parent to a person with moderate learning difficulties must be hard at times.

I think it is a shame that people think that someone's life is not worth living just because they have SN, and that therefore they shouldn't exist. I would not choose to have tests if I were offered them, because I wouldn't terminate anyway.

goingdownhill, sending huge hugs back.

I didn't intend to make the post sound harsh or misleading. My baby boy I lost is coming up to 15, it's just my dd is also coming up to 14, both within a week of each other. I just look at her and think you wouldn't be here if he was etc. My ds with down syndrome is 10 and what really annoys me is how people catagorize disability. Down syndrome being one of the best!! I wouldn't wish my life with my ds on my worst enemy, it's not a bed of roses and as someone has said in a post on another thread...I am in a minority with my sons severity.

Duel, I didn't have an amnio as everything was low risk so no need for further testing.

as missy has just said a parent to a person with moderate learning difficulties................this is not always the case!!
My son does not lead a happy content life!!!

manitz Tue 12-Apr-11 19:24:23

Hi Devient. i think it's difficult to post personals on here as it's so long so individual situations get a bit lost. i was reading 10 pages before I posted so I lost who said what. I'm sorry that you are finding things difficult. i must admit I had previously thought downs syndrome might be the best - not because of the level of need or severity - but because it appears to be high profile and has (I thought) a good support network. It doesn't sound like you are getting much support, i hope you are able to find a way through. xx

sungirltan Tue 12-Apr-11 19:24:32

missymarmite - i'm sorry but posts like yours frustrate me. maybe you have seen something in your experience with sn but perhaps you haven't seen enough (and even as i type that i realise how wrong it sounds - hard to explian bear with me). working with and being a full time carer of are such poles apart. again this is anecdotal evidence. i have seen plenty of miserable ds people who spend a lot of time in hospital.

yes it is true that some ds people live happy fulfilled lives, yes it is true that the personal sufferring can be considerably less than with other birth defects but that is in no way a guaranntee that this rosy picture will be the outcome of continuing with a ds pregnancy and i dont think its wrong to not want to take that risk.

i will never judge those who terminate for birth defects (or any reason actually but that is not this discussion). i certainly dont judge those who don't - hats off to you as i freely admit its not a job i am willing (in the informed sense) to do.

goingdownhill Tue 12-Apr-11 19:24:37

devient you are so talking to the right person about peoples expectation of what goes with a particular syndrome. It must be so infuriating when people come out with the age old "people with DS are happy and content etc..." I am sure many people with downs are indeed happy and content but as with anything others will be massively different.

I really struggle with my son. He is very clearly ASD but when he strolls into appointments and makes great eye contact, responds to questions and is openly loving and affectionate. I am truly looked at like I am insane. What people don't see in the 5 minute appointments are the endless time I have to stop him answering any question with a quote from Thomas, or pestering all day everyday about the next time he can watch a DVD (his current obsession!) the huge anxiety he suffers about life in general. I think people think to be ASD you have to ignore everyone or sit banging your head off a wall. It is indeed very frustrating and I understand! x

sungirltan Tue 12-Apr-11 19:28:46

deviant and going- you deserve a brew (so do lots of posters on here)

the thomas thing made me smile though. tiring as it is the thomas thing with asd kids is amazing - what is it about thomas? but yes, lots of ds and asd kids have some wonderful endearing qualities - doesnt make them less hard work or thier quality of life better which is what some people seem to fail to understand

lol sungirl, I don't drink brew, could I have a wine please

mrsravelstein Tue 12-Apr-11 19:32:32

i had nuchal tests in each of my 3 pregnancies. my aunt has turners, is now in her 60s, and having seen up close and personal what her life has been like over the years, there was no way i would knowingly bring my own child into the world to suffer as she has. simple as that. but as many others have already said on this thread, it is something that each individual should be able to make their own choice about, based on their own experience, without being judged, and being given the most possible support whatever their decision.

goingdownhill, I struggle with my son also!! He sounds similar to mine. I had to laugh when severe challenging behaviour got added to his list of diagnosis/problems, yet no one to help!

manitz, if your child fits into the lovely, content ds box there's support. When your child has problems that doesn't fit into this, your up the creek without a paddle!!

goingdownhill Tue 12-Apr-11 19:35:39

ha ha I do feel like I live on the Island of Sodor, there is nothing about Thomas I do not know.

I am lucky my DS is pretty mildly affected so far and to be honest he is a joy. He is just struggling so much with school and has no friends at all, I only wish I had a magic wand to make the world a safe and happy place for him.

Bumpsadaisie Tue 12-Apr-11 19:36:31

We didn't have the NT test first time round with DD.

We have done this time round, because in whatever choices we make now we now have DD to consider too. As it turned out our risk was very low, but I am glad we did it.

well when you get the magic wand, waft it our way. My ds is registered at a special school but has major difficulties there that he refuses to go. He has been picked up and carried in the past by many including profs and myself. However he's now just too big and heavy to do that, so he's been off nearly a year.

what's the NT test bump?
I don't want to cause upset but I had the blood test for risk and came back low risk.

BlueCat83 Tue 12-Apr-11 19:45:46

It is an individual choice and I wouldn't judge some-one for carrying on with a pregnancy nor would I judge some-one who wouldn't.

I terminated at 17 weeks for a fatal abnormality in February. I did so because the baby would not feel any pain at this time but if carried to term would be born unable to breathe and the thought of my baby opening it's mouth and there being nothing.....It would have been so frighted.

I always said I would not terminate for any abnormalities too. It is completely different when you are faced with that choice. I loved my little boy, it was a planned and wanted pregnancy. As much as I did not want to part with my baby, in my heart I knew that this was the only thing I could do to lesson his suffering and if that means I will forever have to live with this decision then so be....

As for all those comments about terminating because your baby isn't "perfect" what an ignorant statement. How could any mother terminate for that reason? They wouldn't, they made a decision which was for in their opinion best for their child, a decision made out of love not some kind of spite!

goingdownhill Tue 12-Apr-11 19:46:08

devient that must be so so hard. Do you get any form of respite at all. I cannot imagine a year without a break with any child let alone one as challenging as your DS. I hope you have a supportive partner and family around you.

Is there any plan about what to do for his education in the future? It must be so flipping relentless for you, and so sad for your DS that he is so obviously unhappy at his school that he doesn't want to go at all. God life can be crappy sometimes... sad

Respite is the same, he refuses to go, however we have come up with a plan of action that has worked twice already to get him there. Though once he cottons on.............
As for school, if they were a bit more supportive we have worked out a few ways forward, though it won't work full time.
Like Manitz said about support, it's me who's coming up with all the tactics not the profs. Sometimes they rely on the parents for too much.

sungirltan Tue 12-Apr-11 20:04:10

bluecat83 - what an awful experience.i am so sorry

totally agree with your second paragraph though - spot on

goingdownhill Tue 12-Apr-11 20:05:43

I think that parents of children with disability seem to be left to bloody flounder. It seems to me that help is only offered when you have reached breaking point and gone beyond it. It is a situation that I can only see getting worse with the cuts. It is awful the carers in society should have the support they need and to me it seems it will just be taken away to save money.

I hope the plans you are drawing up with for your son help. The school need a boot up the backside for not being more flipping proactive gggrrr!

SpeedyGonzalez Tue 12-Apr-11 20:19:02

There are so many sad stories on this thread. I'm really sorry that so many of you have been in so much pain.

I was the one who mentioned 'perfection'. I said this because time and time again I hear stories of parents (1) practically recoiling in horror from other people's children with visible SN, or (2) avoiding playdates, etc, with children with SN. I hear these stories from parents of children with SN. It is such a strong and unthinking reaction against children who are alive in the here and now that I interpreted it as people being unsettled by the reality of disability and wanting to stay away from it, hence 'perfection'-seeking.

When my amnio test result came back negative I no longer needed to research the implications of having a child with DS, so I didn't have to think it through as profoundly as those of you who terminated for Down's. So I'm very sorry if my words hurt you. I still think, like some posters, that I could not terminate for Down's, but I understand better now why some of you did.

I also said that I thought that Patau's and Edward's are in a different category. By saying this I was not presenting some sort of hierarchy of SN. I believe the choice in these cases is the difference between keeping someone on life support when their body is destroying itself, and letting them go sooner before they are utterly ravaged. I have watched someone I love die in the former category, and, given the choice, next time I would choose the latter.

thefirstMrsDeVere Tue 12-Apr-11 20:30:28

My son with ASD is also very affectionate. Fortunately he has no interest in Thomas the Tank (Phew) but is utterly obessesed with Dr Who. This was fine when Mr Tennant was in the job but a bit tedious now Mr Smith has taken over smile

When I was applying to be a respite foster carer my SIL (who has worked in SS all her working life said) Thats a great idea. You should get a Downs. They are always easy to look after. hmm

yeah, thefirst, is that an offer??

speedy, I understand when you look at it from the child/baby's perspective. However being in that position as a mam is just the same whether the child/baby has DS or another.

How did this thread get over to antenatal tests and choices? It didn't start here did it? Or am I totally wrong?
Fwiw - if it has been moved I think that's a rubbish decision. A lot of people post in the choices section about their personal situation. This thread is not ahout a particular situation. It is a general moral and philosophical discussion and there is no reason why it should not be a 'mainstream' discussion.

manitz Tue 12-Apr-11 20:46:27

Devient, I can't believe a school like that would be so unhelpful. i must admit that in my pregnancies my parents experience of managing my sisters care made a real impact on my choices. My dad has even said that what happened was tragic but the bureaucracy and the enormous job of joining up the work of the health service and social work was largely left to them and was a real part of the nightmare - they felt well treated by individuals on the whole but the systems are not set up for dealing with actual people. It looks like things haven't changed much in the last twenty years, actually I think even with my terminations and diagnosis I experienced enough contact with services or agencies to not envy anyone who has to navigate the system on a permanent basis. I hope your tactics continue to work and you get some respite it sounds relentless. xx

G1nger Tue 12-Apr-11 21:01:59

I'm having a child because I want it to grow up to be independent, and in time hopefully to have a child of its own. I've had the Combined Screening Tests and got a low risk result of 1:20,000 and I'm happy to stop at that. I'll also be having the anomaly scan, of course, so maybe they can rule out more things with that, but I really, really don't think I could face a late term termination if something came up. But that's my decision and it's not something I'd seek to hold other women to.

So where I am now is that I'm aware, of course, that there are many, many things that could still affect my child and affect my dream of it growing up to be independent and have a child of its own one day. I wouldn't be going into parenting if I didn't accept all of that. I could, of course, pay for CVT or amnio to rule out many more things, but I - personally - and again I don't hold others to this - would see that as a vanity project for myself. It's something I'd nevertheless do if only there was NO risk of miscarriage attached to either procedure.

Why fear Downs Syndrome? (and I always have) Well part of it is that we're given the opportunity to test really early on and get a risk assessment on it. Another part is that it's a highly visible disability that almost always (or always?) prevents children from growing into independent adults. There are so many things that we can't ensure don't happen to our children, and so many things we'd have to accept if they happen, but if someone offers me a combined screening test and a risk assessment of this condition, at an early point when I'd still be willing to consider terminating, I'll take it. And then I'll accept in future whatever hand fate deals me.

I make no apologies for any of this.

SpeedyGonzalez Tue 12-Apr-11 21:04:33

Devient, that depends on the parent.

MrsGrotBag Tue 12-Apr-11 21:20:35

Devient - would you mind popping over to special needs when you have a mo?

Speedy, what I mean is the stress of it all is the same, even though the actions etc may be different.
Sometimes there is no choice.
I had a termination for one of my children. Not my choice. This was emergency surgery as my baby was killing me. He also had numerous problems and wouldn't live.
I also had the blood test for DS and was low risk so no need to test further.

Manitz, it looks as though nothing has changed........if your face fits or you fit in a cubby hole, fine.......if not.....tough!! Same with the school....I have found them to lie and I have proved it...to no avail, however as time goes on, more and more is coming out of the woodwork. I am at the mo building up a package to fight my sons corner with.

Goingdownhill, meant to say thanks earlier also.

SpeedyGonzalez Tue 12-Apr-11 21:34:36

I see what you mean now, devient. I wasn't even thinking of the stress element, more, the mechanics of the situation.

What a horrible situation you were placed in with the child whose existence was threatening your life. sad

God, sometimes life is just awful.

CheerfulYank Tue 12-Apr-11 22:13:47

Ginger some people with DS do lead fairly independent lives. When I lived in a larger city and took the bus to work, one of the stops was a group home for people with DS. It was sort of like a college dorm; they all lived there with one resident person helping them if they needed it. They took the bus to work; I believe most of them were employed at one of the inns downtown.

Devient I'm very sorry you're having such a rough time.

MyangelAva Wed 13-Apr-11 01:02:39

What an awful and unhelpful thread this is. I can't believe that so much of what has been written has in fact been written, when the decision to and process of terminating a very much wanted pregnancy is so horrendous. For those that have, it is an entirely selfless act in all the cases I have read on here; for those who didn't, another selfless act based on a slightly different viewpoint and circumstance and for those who are so fortunate to have never been placed in the worst position a mother could ever face- well, "there but for the grace of God", for you have no idea.

I was in that position 3 months ago when I made the shock discovery that my daughter, Ava, had Edwards syndrome and a severe heart abnormality. If she survived birth she would have probably lived for minutes. I was 26 weeks and none of the scans (I had paid for extra- so I had 6 in total), NT or combined tests and picked anything up before then. Ginger I was given a risk factor of 1:189000 for Edwards. Ava'a condition was only discovered late on due to the heart abnormality and growth patterns which could have only been detected so late on. Given this knowledge all preconceptions as to what you would do if....... Disappear. Because all you think about is what you think is best for your baby. And no-one has the right to judge anyone on here, whatever decision they made, for whatever diagnosis.

Mishtabel Wed 13-Apr-11 01:44:16

Deviant , I'm sorry, I must have missed your post too. I'm so sorry for the loss of your baby and for the struggle you are having with your son. I hope you understand (and I think you do) that my decision was in no way a personal attack on people with DS. As I've previously said, I can understand if some parents of children with DS interpret it this way, but all I can do is stress that that is not how I feel. I do hope you get the support you need/deserve.

ThefirstMrsDeVere , I'm not sure in what context your "Seriously?" was. Whether it was as in " Seriously, if you want to know what I think..." or "Seriously? Interesting...." OR "Seriously? That is why you terminated?" (in which case I would consider myself to have been judged).
Either way, I do get what you are saying for the rest of the post. I was just making a point that there are many reasons people choose termination, even despite 'similar' (ie losing a child) history. I say 'similar' as I don't compare the way you lost your DD (I remember a powerful post of yours back from that chicken pox thread with SS - what a horrible thread that turned out to be), to my DD dying suddenly and painlessly. The point I guess I was REALLY trying to make is that people make decisions based on not only their experience, but their perspective of their experience, and no one has a right one way or other to judge that. I'm hopeless at getting my point across sometimes, but I hope you understand what I'm trying to say. 

I was also quite surprised to see this thread over here. It wouldn't exactly be what I'd consider to be supportive for anyone going through testing. I remember reading, against my better judgement, discussions of this nature when I was trying to decide what to do (though they were much more inflammatory), and all they did was cause more despair and confusion than anything. My last post here, when taken out of context, sounds anti-DS, which it wasn't intended to, as I'm not. I was just responding to previous posts that seemed to simplify DS as a 'mild learning disability', and stating that, while it can be such, this isn't always the case. I certainly wouldn't have posted info regarding mortality rates, as I did, as I think that kind of information should be left for individuals to seek only if they so wish. As such, I'm going to ask for my last post to be deleted (do I just report it?). 

I also think the thread may cause additional pain to those recently making the decision to terminate who come here for support. I do, however, think this is a worthwhile thread, just doesn't seem to fit here IMO.

Finally, I'm glad this thread has helped some understand why some people may make the decisions they do. IMO those who have/would terminate for DS expect everyone to agree with their decision, just for people to refrain from judgement, that's all

Sorry, I'm obviously incapable of being succinct

Mishtabel Wed 13-Apr-11 02:21:32

MyAngelAva, I'm so sorry you have been, understandably, upset by this. This is why I think this is the wrong place for this thread. I'm sure no one would judge you for your decision in the circumstances. It's only those that choose to terminate for DS that seems to be a problem for some. On behalf of those people that have made that decision, thank you for your understanding and support xx

MyangelAva Wed 13-Apr-11 08:37:58

Thank you Mishtabel, I agree that this is entirely the wrong place for this kind of discussion. I read most of these 12 or so pages at silly o'clock and I guess I was just infuriated because I don't think that the question posed and the subsequent messages posted are helpful at a time of great distress for a number of people who rely on this board. I am assuming that Lesanimaux was asking out of some sort or curiosity and is not in a horrible situation with decisions ahead of them and I think it's naive to think some people will not have been severely affected by a lot of these comments during a very difficult time. I know that all judgments seem to be aimed at people with a DS diagnosis and not at fatal conditions but those terminations are no less real and their pain no less than mine I'm sure. I just wanted to make people aware that, having been through the ordeal, it's not as simple as "getting rid of your "imperfect baby" and ttc a better one". A dr doesn't come with a magic wand and everything is ok. Especially the later on you are in a pregnancy. And those people who have not been in the position can never judge, because noone knows exactly what they would do in such a situation because, through experience, I have found that these things change when you discover you are "the one" in however many.

frakyouveryverymuch Wed 13-Apr-11 09:15:52

I also don't get why this has been moved to here?

It's a philosophical/ethical question and entirely inappropriate for it to be in this section.

thefirstMrsDeVere Wed 13-Apr-11 09:38:17

mishtabel I am sorry I dont know what you are referring to. Its a long thread and I am not sure what you mean but I will have a look back when I have a bit more time. (shouldnt be on here really, having a sneaky MN)

I am suprised that you would think I mean 'seriously' as in hmm. In fact I am a bit upset. I dont think I have displayed that sort of behaviour on this or any other thread discussing termination for any reason. BUT if it came across in that way I am very sorry. I would hate to think that I upset you with a badly worded post.

DuelingFanjo Wed 13-Apr-11 09:51:41

yes, I too wonder why it was moved here. What aterrible decision. People going through these decisions do not need to have this kind of discussion in this area.

ghislaine Wed 13-Apr-11 10:01:15

As someone who's been very deeply upset by Mumsnet HQ's decision to move this thread here, I wrote and asked why. The response I got was that it was upsetting to other mumsnetters to have it in Chat and "We are all for freedom of speech and we have found that allowing such threads to stand nearly always encourages posters to explain their own very different points of view - and this often has the effect of educating people and making them more empathetic."

I have found this really shocking. I didn't ask for the thread to be deleted, merely to be moved to an area where it would not cause distress to women who have made (or will find themselves facing) decisions about terminations. But it seems that those of us in that position are here just to educate others and we should just suck it up in the interests of freedom of speech. This attitude completely misses the point that there are real people posting here about awful situations they are in, not that this is some debating topic where we can all air our different opinions.

I don't post here as some kind of lesson to others. I post here to connect with others who have been through what I have been through and I feel that Mumsnet HQ has taken that away from me.

Mishtabel Wed 13-Apr-11 10:02:37

Just to add, I hope everyone realised that I actually meant to say "IMO those who have/would terminate for DS don't expect everyone to agree with their decision, just for people to refrain from judgement" blush

DuelingFanjo Wed 13-Apr-11 10:06:19

did the OP deliberately NOT post it in this section to start with? I do hope so. What a shame that mumsnet hq thought this a more appropriate place.

manitz Wed 13-Apr-11 10:08:05

I agree this is an inappropriate place for this thread.

Mishtabel, I found your stats useful and I think your post was really helpful to me but I think you might have taken mrsdevere the wrong way. I couldn't see a 'seriously' but was the word you were upset by 'honestly?', i can see where you are coming from but i took it to mean 'do you want to know honestly how I feel?'. There are a lot of emotions tied up in this thread because it talks about times in our lives which were very upsetting - or issues which concern people we love very much. i was in tears through parts of this thread (and it remained with me yesterday evening) so although it is an ethical discussion it is also a very personal one.

ghislaine Wed 13-Apr-11 10:08:09

I wanted to add that the fact that this thread features in "Discussions of the Day" only adds to my impression that this is seen as some sort of abstract topic we can all have a consequence-free chat about not an intensely personal and distressing experience.

ghislaine Wed 13-Apr-11 10:09:58

Yes, it was moved by MumsnetHQ after objections were raised (in Sitestuff) to it being in Chat.

thefirstMrsDeVere Wed 13-Apr-11 10:11:02

I dont think the thread should be here. It is not up to those who have been through this to educate others unless they choose to.
This is not a choices thread or a supportive one. It was intended as a discussion/debate.
As a debate it invites opinions that would be unhelpful and distressing to someone dealing with the issue first hand.

I welcome debate on these issues because I think our society needs a good deal more education regarding disabilities BUT this debate should not be forced upon those who are having to live it rather than theorise about it.

Mishtabel Wed 13-Apr-11 10:12:10

Oh thefirstMrsDeVere, just saw your post - you didn't upset me, honestly. You have been nothing but your usual lovely self here (I lurk a lot). I'm sorry if I* made *you feel upset. I just wasn't sure of the context of the 'seriously', but I had no problem with your post. Again, sorry for any misunderstanding

thefirstMrsDeVere Wed 13-Apr-11 10:15:19

Forget it Mishtabel Its fine honestly. I was upset with myself because I thought I had put my foot in it and I shouldnt have projected that on you. I didnt mean to but I came back (again - have loads to do!) because I realised how my post might come across.

How is that for tying ourselves in knots smile

Mishtabel Wed 13-Apr-11 10:23:01

Oh more blush blush from me. Sorry I meant "honestly" (thanks Manitz). And how you said it manitz is how i took it at first, then my defensive little self, thought 'was it?' [moan]. I should get an early night I think. Goodnight ladies

Mishtabel Wed 13-Apr-11 10:29:25

Another x-post - I am just too slow to keep up with you ladies. I'm glad that is sorted mrsdevere (in case you happen to pop back)

MyangelAva Wed 13-Apr-11 13:51:04

OMG, I had no idea that Mumsnet HQ had actually moved this thread to the Antenatal tests/ choices board.

What an amazing lack of judgment.

I'm sorry, I was reading this thread (when I should have been asleep really) on my iPhone last night and thought that it was LesAnimaux being inappropriate by posting this kind of question on this board.

So ghislaine, let me get this right; this thread was 'too upsetting' for people in a general Chat forum but it was not thought to be 'too upsetting' for people who are actually living the nightmare and consequences of finding out that their baby is not 100% healthy, with whatever diagnosis and decisions that may entail?! For those people who now feel they have to justify their own individual reasons for fear of being chastised?

I am all for free speech, however it has to be appropriate, and Mumsnet surely has a duty of care to protect its users from emotional harm. This is not the place for such an abstract debate. I agree with the others; although I hope that some of the people who have read and posted on this thread have learned something, we are not here to educate others at the expense of our own emotional wellbeing.

JustineMumsnet (MNHQ) Wed 13-Apr-11 15:01:03

Hi all,
I'm really sorry folks have been upset by our decision to move this thread to this topic yesterday. When we set up this topic it was for the precise reason to house this kind of discussion around choices to do with testing in pregnancy. At the time it was felt it would be better to have one place where such discussion could occur, so that those who wanted to, could easily hide the topic.

We do understand that these issues are extremely emotive and potentially upsetting but we do also think that MN ought to be a place where people can discuss difficult subjects. If you disagree or think we should review this please do let us know and we promise to give it some more thought.

We know that there have been some issues around being logged out which means that hidden threads aren't always staying hidden and we looking into that as a matter of urgency.

Best
MNHQ

ghislaine Wed 13-Apr-11 16:04:13

Yes, MyAngelAva, that is exactly right. I guess it has been made very clear to us that the feelings of women who terminate for abnormalities really don't count.

Justine, are you and others at Mumsnet HQ really not able to see how inappropriate this is? This is not the place for such a "discussion" as you term it. Whatever the original intention of this section it has clearly evolved away from that.

If perhaps I started a thread asking whether you would be able to turn off the life support of a fatally injured loved one, would you move it to Bereavement so that others who had been through that decision could give their opinion and educate others about the experience? It's just a discussion, after all.

RebeccaMumsnet (MNHQ) Wed 13-Apr-11 16:18:33

ghislaine

I wanted to add that the fact that this thread features in "Discussions of the Day" only adds to my impression that this is seen as some sort of abstract topic we can all have a consequence-free chat about not an intensely personal and distressing experience.

Hi ghislaine
Thank you for your comments we will take them on board.
We just wanted to clarify that this thread has never been a 'discussion of the day'. We do read your feedback so please do continue to add to this thread.

Best
MNHQ

NatzCNL Wed 13-Apr-11 16:23:21

I personally do not go into general chat as that is not where I feel I would find the support I need. I go into antenatal tests and choices as there are women who have had to experience things I have. I also continue to visit AT/C to offer support to those unfortunate parents who are having to live the nightmare I have lived and continue to live.

Choosing to terminate a much wanted pregnancy for ANY reason, not just for DS is absolute hell. What we have to experience and the journey we begin after the termination is a long and lonely one. Finding the support I have found on mumsnet has helped me along my journey. I actively avoid any chat subjects that will judge me and have the usual 'I would never terminate... and never have' because I CAN NOT COPE with that kind of negative and judgemental attitude.

The fact that MNHQ feels that AT/C is the place for this thread is shocking. AT/C in my opinion is where parents who are scared, worried for their unborn babies, afraid of judgement and who feel they cannot get any support in RL go to find the support they lack elsewhere.

People DO come to AT/C to discuss difficult subjects, and the reason these subjects are difficult is because they are living these subjects, they do not come here to debate ethics. How very unhelpful to have such a damaging discussion - because this is a discussion thread, not a support thread - on an area of MN that is specifically design to provide information and support to those who are going through one of the worst nightmares any expectant parent can go through.

I did not terminate for DS, my daughter had other issues which lead us to our heartbreaking decision, but I fully support all my friends I have made on here for each individual decision to let their babies go To have a thread that is as passionate in each view on the issue of termination is very damaging to already vulnerable MNetters especially those who are very recently experiencing the loss of a much wanted baby, or those who are having to come to a decision.

pookiecat Wed 13-Apr-11 16:30:23

The problem is we all want perfect children, when you get pg you dont know what will happen, there are all sorts of things that can go wrong before during and after birth. My test for ds came back high, however I refused to have an amnio and my dd is perfect !! Saying that I always said you get what your given. However there is a fear of the unknown and people with disabilities should be seen in socieity not hidden away. At the end of the day we all have a choice.

misty0 Wed 13-Apr-11 16:31:35

Justine, are you and others at Mumsnet HQ really not able to see how inappropriate this is? This is not the place for such a "discussion" as you term it. Whatever the original intention of this section it has clearly evolved away from that.

Absolutely ghislaine! I've been trying to think of how to put that concept properly myself. It would be clear to anyone at first glance that this forum is being used regulaly - ie: 600+ posts on 2/3 particular threads - by ladies grieving and/or coming to terms with a life changing decision.

As such it should have been managed with care and delicacy by the MN team. Clearly it has not. How sad that my and others place of refuge at such a difficult time has been disrupted. sad

I didnt want to post here because it brings it to the top again, but had to add my support to those who are trying to sort this out.

saggarmakersbottomknocker Wed 13-Apr-11 16:36:56

Agreed. This is so not the right place for this thread MNHQ. It should be returned to it's original place and anyone who doesn't wish to see it can hide it.

Had it been in this place originally I wouldn't have posted. It's insensitive.

JustineMumsnet (MNHQ) Wed 13-Apr-11 16:48:48

ghislaine

Yes, MyAngelAva, that is exactly right. I guess it has been made very clear to us that the feelings of women who terminate for abnormalities really don't count.

Justine, are you and others at Mumsnet HQ really not able to see how inappropriate this is? This is not the place for such a "discussion" as you term it. Whatever the original intention of this section it has clearly evolved away from that.

If perhaps I started a thread asking whether you would be able to turn off the life support of a fatally injured loved one, would you move it to Bereavement so that others who had been through that decision could give their opinion and educate others about the experience? It's just a discussion, after all.

No we wouldn't have moved it to Bereavement but we might have moved it to a topic called life support choices. Bear in mind we moved it because the thread was causing anguish in the chat topic. I don't think there's an answer to this that spares everyone's feelings, unfortunately.

NatzCNL Wed 13-Apr-11 17:16:23

Bu Justine, surely placing this thread where mums are having to deal with the issue being raised on this thread here and now, and those contemplating the future of their pregnancy is causing much more anguish?! The people who ARE making the decision to terminate for DS are in AT/C, not in chat.

Those whose feelings should be spared and treated with sensativity are the ones who are going through this awful time. How can that not be more important than the anguish it is causing to those who do not have the need to read every thread that has the words Down Syndrome or Termination in the title? Because any parent who is going through this right now will open every thread in AT/C that mentions this. I am almost certain that they aren't going to be going to general chat to ask for words of advice or support.

Please re-think the placemant of this thread

BlueCat83 Wed 13-Apr-11 17:18:21

No we wouldn't have moved it to Bereavement but we might have moved it to a topic called life support choices. Bear in mind we moved it because the thread was causing anguish in the chat topic. I don't think there's an answer to this that spares everyone's feelings, unfortunately.

Where exactly was this thread originally?

If it was not in a place where others were seeking support for having made this terrible decision then surely that place is still more fitting than this?

Also what about woman who wish to make a decision but after reading this feel shamed into not making a particular decision? Surely woman facing this choice should be allowed to air their feelings without fear of being judged and allowed the support they so desperately need. It's ok to say hide the thread, but you can't hide it till you've seen it and sometimes when your in a dark place this is just something else to beat yourself with.

No we wouldn't have moved it to Bereavement but we might have moved it to a topic called life support choices Surely anyone facing a decision like this needs support, patience and understanding.....NOT a moral debate with such strong opinions either way? When you have strong opinions for both sides as you do on this thread then woman making these choices simply can not win can they? Is that fair?

computermouse Wed 13-Apr-11 17:18:55

Message withdrawn at poster's request.

FannyLogan Wed 13-Apr-11 17:19:38

Surely it would cause less angst in chat than here

ANT&C has been my 'home' while I was living the nightmare of a 1:3 and everyone has been supportive and lovely and I was shocked to see this thread had moved here - its really out of sync with the whole 'ethos' of this board which is unfailingly supportive and populated by people who have also lived the nightmare, rather than, frankly, people who have never had to comtemplate the hideous decisions we have and are mostly therefore talking out of their arses.

I have no problem with people debating any issue, but it is very insensitive to put in here IMO.

NatzCNL Wed 13-Apr-11 17:21:56

Agree BlueCat83 and FannyLogan, cant understand how MNHQ dont understand why this is causing much more upset placing it in AT/C!

manitz Wed 13-Apr-11 17:24:22

computermouse. i have found that when people come on this board facing a result thrown up by an antenatal test, those that post on the board rarely offer their reasons or personal point of view on why they handled it as they did. Usually they give factual advice eg if someone wants to know what happens during a termination or how they dealt with grief in the early days, or conversely what life is like living with a baby with x. Usually posters are led by what is asked. it is not ime normally used as a place to debate the rights and wrongs of such issues or to influence decisions. That might have been the purpose of the area when set up but it's not how it is used.

NatzCNL Wed 13-Apr-11 17:24:46

Computermouse, AT/C is used as a support forum, not a debate forum. I agree that a discussion on all choices is valid, but AT/C is not the place for this thread or discussion.

computermouse Wed 13-Apr-11 17:27:39

Message withdrawn at poster's request.

BlueCat83 Wed 13-Apr-11 17:29:04

computermouse The person who started this thread isn't asking for advice because they have found themselves in a position which means they have to make a choice. They are not asking for advice, they are asking a more general question for their own curiosity. People who use this section are here because they need advice, they are faced with having to make a choice and are looking for empathy from others who have been there.

This poster is not in this position. He has no antenatal results and no choices to make so then why should it be under antenatal results and choices?

I am with those who think that a place called 'antenatal tests/choices' is the place to discuss antenatal test and choices, which is exactly what is being done.

The title of the thread explains very well what it is about, anyone who clicks on it should have a good idea of what the discussion will be about. More so here than elsewhere, in fact, as 'DS' can mean a number of things but its location in test/choices makes it clear which kind of DS we are discussing.

Of course, the people who asked for this thread to be put here are obviously not posting, because the reason they asked for it to be moved was so that they wouldn't see it, because it upset them.

computermouse Wed 13-Apr-11 17:35:08

Message withdrawn at poster's request.

NatzCNL Wed 13-Apr-11 17:41:10

Many of the people who have commented on this thread have said the age old line 'I would never....', they are discussing a fictional decision, nothing from actual experience which is what people who come to AT/C come for, peoples actual experiences. Not a discussion of 'what would you do' or 'why do people to this'.

There are some who have chose not to terminate and those who have DS children, but the whole point of this thread being started was not to ask for experiences or support, but to start a debate on the issue of terminating for Downs.

I am not saying people shouldn't be entitled to their own opinions, but this thread would be better placed elsewhere away from the ones who are suffering with the reality of having to make that decision.

NatzCNL Wed 13-Apr-11 17:42:27

I retract that first statement, there are actual experiences of choices to and not to terminate, however many who are also not from actual experience

computermouse Wed 13-Apr-11 17:43:11

Message withdrawn at poster's request.

Cherrybug Wed 13-Apr-11 17:44:41

I have held off commenting on this thread, though have read most of it, as I didnt want to contribute and hoped it would disappear down the board. I have to say though at this point I also urge MNHQ to relocate this upsetting and inappropriate thread. If the rationale for moving it from general Chat is that it was upsetting and causing anguish for some, the decision to move it to AT/C where it is obviously hugely upsetting for most, cannot be justified. Yes there is a place for ethical debate and discussion but it is not here. People use AT/C not for ethical debate but for advice, support and empathy at what is easily for most people, the most difficult, worrying and often devastating time of their lives. Perhaps, as has been stated, AT/C in it's infancy was expected to be an area for such debates. However, as Ghislaine rightly points out, it has truly evolved beyond this. Please look at the reality of this forum and what it is used for, not what you think it might or should be used for.

I'm sure you are keen to avoid causing unnnecessary distress to MN users and I think the decision to move this thread was not done out of a complete lack of regard for the experiences of people using AT/C. I do however think it has been a naive and ill considered decision and therefore you must admit, a mistake. The right thing to do now is to move it and leave those of us who hugely value this area of MN to come to terms with the choices we have made, without having to read damaging posts at a time when many of us are very vulnerable.

NatzCNL Wed 13-Apr-11 17:45:40

This thread should be placed elsewhere, not in the face of those who are having to go through this experience right now. Feel free to have this discussion, but putting it where it could cause a great deal of upset to very vulnerable people is not a wise decision. That is my argument, not who can and cannot post.

FannyLogan Wed 13-Apr-11 17:48:39

Imagine you are in a hideously painful and traumatic situation, for example being told that your precious longed for baby who you can feel moving inside you and who you have hopes and dreams for, may have a very serious condition, possibly incompatable with life, life limiting, or one which will potentially make their life painful, short or difficult.

You have to decide whether to terminate this preganancy or bring a baby into the world with the above problems. A no win situation either way.

You are in a nice cosy room, having a chat with a group of people who have been through this or are going through this. They understand you and where you are coming from. You are supported and not judged.

Suddenly 50 people come crashing through the doors who have no idea about the reality of being faced by these sort of choices saying

'Well I would terminate - its selfish not to'
'I wouldn't how could you kill your baby?'

and 200 other variations on the above.

It's very upsetting to the people here and really very insensitive that the thread was actually put here by MNHQ 'because it was upsetting other posters on chat'. What about us??

computermouse Wed 13-Apr-11 17:55:05

Message withdrawn at poster's request.

NatzCNL Wed 13-Apr-11 17:59:12

I can understand their reason for wanting it moved, but to move it to this area was not a wise decision

FannyLogan Wed 13-Apr-11 18:18:09

But we are all (as in those of us in ANT&C) potentially parents of children with SN or Down's so surely that doesn't solve the problem...?

ghislaine Wed 13-Apr-11 18:19:59

Can MNHQ really not think of anywhere else this thread could go? Perhaps in Off the Beaten Track?

computermouse Wed 13-Apr-11 18:22:38

Message withdrawn at poster's request.

CheerfulYank Wed 13-Apr-11 18:28:02

I don't think it should be deleted outright but yes, this is a horrible place for it to be.

Move it please!

ghislaine Wed 13-Apr-11 18:29:33

Tillianastra and computermouse, you, like MNHQ, are taking a far too literal view on where this thread should go based solely on the name of the section. In the face of the context that has been provided again and again by the women who actually use this board your lack of comprehension is stunning.

livefortoday Wed 13-Apr-11 18:29:40

ok I haven't read all of this thread as too long, but get the jist.
I think many of you seem to have views of what a person with down syndrome is like and think they are all the same. this is obv not true.

Also many of you talk about people in their 30s+ who are now in care homes/ difficult. I think what you need to see is that attitude towards anyone nowdays with a disability is different from 30 years ago. Children in the 70s were most likely pushed out of society and not encourage. This is a world away from today. where although often fought for, speech therapy, physio, osteopathy..music therapy ..etc.. is available, mainstream schools encouraged and supported. children are very much encouraged along in their lifes leading to hopefully mature, independant adults

Note: I am a full time carer to a child with Down syndrome and their siblings. Each child gets treated the same, encouraged the same, spoken to the same, and disciplined the same! Yes it is more difficult in many ways, but they are just beginning to reach a age where things are getting easier. They can walk, talk and be understood, beginning to read and write. Is dependent in most things you would expect a child of that age to be. They are social, make friends, and enjoy every activity going.

I currently would not let them out of my sight for a moment as a runner!

MyangelAva Wed 13-Apr-11 18:54:02

I can't believe that this thread is still here. JustineMumsnet can you not see the anguish that is occuring here by vulnerable people who are living this "discussion topic"?! Even the title is provocative- "why not WANT a DS baby".

Pookiecat thank you for proving the point that unhelpful and insensitive posts are adding to this anguish for parents who have made and are making the heartbreaking decisions that you have been fortunate to have avoided. My baby had a fatal chromosomal abnormality and an associated heart condition. I didn't want a perfect baby- one that could have survived would have been nice- but thanks for judging.

And computermouse please see the above as a case in point. Of course everyone has the right to comment but judgmental and ignorant comments are often made by those who have not worn these horrible shoes. Yet.

Again, I echo calls to remove this thread from here because it is entirely unsuitable and is causing a great deal of mental & emotional harm for a good number of people.

ChippingInMistressSteamMop Wed 13-Apr-11 18:58:54

I agree that this is not the right place for this thread to be.

It doesn't matter why this topic was set up, it's not how it's currently being used and that should be respected.

There are lots of upsetting things that get posted in chat. It was clear from the thread title what it was about - it is easy enough to select to hide it.

It is FAR worse here

DuelingFanjo Wed 13-Apr-11 19:19:12

would MN HQ move a thread titled "Ignorant quetion, and not sure how to put this tactfully, but why do people decide to have babies with DS?" to the special needs part of these boards? Would people object if I started one in that area?

MyangelAva Wed 13-Apr-11 19:50:02

A very good point dueling

expatinscotland Wed 13-Apr-11 20:16:35

'Would people object if I started one in that area?'

I doubt anyone would. From my experience there (my child's SN could not be diagnosed antenatally, not that it would have made any difference), people would answer and discuss, rather than getting upset at anything that's not directly in line with their own opinions.

hmm

expatinscotland Wed 13-Apr-11 20:17:59

HQ can't win here, because basically, folks who don't want to see this issue discussed aren't go to be happy no matter where the thread is.

That doesn't mean the matter shouldn't be discussed, however.

There's always 'hide this thread'.

Heaven knows, plenty of us on the SN boards have to do that a* *lot.

NatzCNL Wed 13-Apr-11 20:22:00

Expat, it is good to know that the parents in the SN forum would be able to discuss that topic without getting upset. But the parents that are using this forum are in a very emotional and vulnerable state when they come to seek support and advice.

To expect parents who are going through a highly emotional and very sudden experience to be happy to sit back and not feel judged or take offense to this new and scary situation they find themselves in is a bit much.

The reason we want this moved is to protect those who are going through emotional turmiol at the moment and give them the much needed support that they may not feel they can get in real life, rather than being judged for their decision.

Just coming back to this thread and I see I'm not alone in being surprised this thread was moved here - though clearly there are a number of differing perspectives.
For me - this thread is a debate to which people have bought personal experiences to inform their point. It was not a thread intended to reflect on any one situation or provide support to any one poster. It is totally wrong imo to have moved this thread at all.
Life will bring us all painful and at times impossible choices. Nobody has a charmed life - at some point things fall apart for everybody. It is unwise for any of us to try and live as if that isn't the case and refuse to confront that aspect of our world. You are also on a hiding to nothing if you try and think that your personal choices will not make differences to other people. We all live in communities and our attitudes are formed and influenced as a group. It HAS to be possible therefore for people to talk about even the most very painful aspects of our lives freely and without being shunted in to a discussion ghetto. This thread was plain in it's title, has been well structured in arguement, is overflowing in honesty - and in the pain that comes with these most difficult decisions. There is nothing wrong with this thread and it should be in a section where those who want to debate can do so. That isn't this choices section and it isn't off the beaten track either.

UrsulaBuffay Wed 13-Apr-11 20:25:29

How about 'Other Subjects' or off the beaten track even?

DuelingFanjo Wed 13-Apr-11 20:35:44

I wondered if the OP put any thought into where she posted it, did she mean for it to be in chat rather than here? I wouldn't really dream of posting the thread I suggested in SN by the way but I think it's a point worth making. we all hide threads I am sure, but when they are posted in areas like this then it will be upsetting for those who have felt safe to discuss difficult decisions here.

LesAnimaux Wed 13-Apr-11 20:38:49

As the OP, I didn't post in the antenatal choices topic initially because I didn't want to be too in the face of people who were going through antenatal tests and having to make difficult choices.

I chose to post in chat because I thought I might be flamed and if so wanted the thread to eventually disappear.

I have been humbled by the response to this thread, and relieved it hasn't turned into a fight.

NatzCNL Wed 13-Apr-11 20:39:02

DuelingFanjo, this post was originally in Chat, however Mumsnet HQ decided it belonged in AT/C and are refusing to move it elsewhere hmm

DuelingFanjo Wed 13-Apr-11 20:43:04

yes, Natz - I know it's been moved. Sorry - I meant was it her intention to not have it here and that was why she posted it in chat.

Thanks LesAnimaux thank you for clarifying. I had thought you probably put it in chat so it would disappear. I won't post anymore because at least then I won't be bumping it all the time.