A question about Down's syndrome [WARNING - Could be upsetting]

(154 Posts)
JaneFonda Fri 24-Feb-12 17:29:46

I have a question because I genuinely don't know the answer. I would never look to offend or upset anyone, and this is definitely not coming from a judging angle.

One of my best friends is currently awaiting results for tests to see if her baby has an increased chance of having Down's syndrome.

I was talking to her about it, and she'd been reading about possible options, eg. termination.

I am genuinely unsure - why do some people choose to terminate a fetus if it has Down's syndrome? Absolutely not judging anyone's decision, it is none of my business, but I suppose I'm wondering what the dangers are if a baby is born with Down's syndrome?

I have only met two people with Down's syndrome, and they have seemed, well, perfectly healthy. I understand about the mental aspect of it, but physically - are there problems?

I would really appreciate any answers you can provide, it's a scary time for my friend and I'd like to be able to support her without seeming totally ignorant.

DS can come with lots of health problems, heart and bowel mainly afaik. Some people also don't feel they can provide the lifelong care that a child with DS may need, nothing to do with health risks.

The degree of physical problems can vary a lot. Some people with Down's syndrome are born with major heart defects. However increasingly these are fixable. Having a child wih Down's syndrome will change the dynamic of a family and the care they need will be different from that you expect to give a NT child BUT of course any child can have an accident or develop an illness that impacts in the same way. There are no guarantees.

Coconutty Fri 24-Feb-12 17:37:31

I have worked with several children with downs, and some of them do suffer more with their health (heart probs quite common) and as previous poster said a child with downs can need lifelong care. Most of the parents did say that they would not be without them and how much they have enhanced their lives.

Sadly, some of the children I worked with were either fostered or adopted, I dont know the reasons behind this.

Website for the Down's Syndrome association here May be useful for you and your friend?

2old2beamum Fri 24-Feb-12 18:03:08

As a mum of 3 adopted children (now adults) with Down Syndrome I obviously cannot see the negatives. Yes the 2 DD's still have complex heart problems but they get on with it, they both went through mainstream school and got 2 &3 GCSE's apiece (not grade A). DS is severely deaf, poor sight and epilepsy thrown in for good measure. Above all they are so kind and thoughtful every week they put £2 away and at Christmas choose a charity last year it was the homeless They frequently buy DH and I little gifts.
They have never stopped us doing anything, they have travelled to many countries. We eat in smart restuarants and they have never let us down.
Sorry if I sound syrupy I am not usually! It is not the worst birth abnormality.

KalSkirata Fri 24-Feb-12 18:13:21

some poeple terminate for disabilities, some do not. It wouldnt bother me. A baby with DS that is.

angel1976 Fri 24-Feb-12 18:16:50

I love Kelle's Hampton's blog. She has a little girl with DS that is my DS2's age and I have followed her story. She is the mother I want to be. blush I really think that since I've read her blog, I've changed the way I think about DS completely.

feelinghappynow Fri 24-Feb-12 18:17:15

The severity of DS can be huge.......some babies with it do not survive the pregnancy or live long after birth due to their problems. I think because people see DS people living full and happy lives, they assume that the problems are not necessarily severe, and therefore cannot understand reason for termination.

I say this as a mother of a child who had a (not DS) chromosone abnormality and didnt make it....

SayBoo Fri 24-Feb-12 18:18:04

I have worked with young people witsh Downs Syndrome and almost all had serious, life-limiting heart defects, to answer your question.

Personally, I would find it very hard to go through with a termination in such circumstances. My son is autistic and I wouldnt be without him. I do understand why people are frightened by the prospect, though, and I dont judge.

feelinghappynow Fri 24-Feb-12 18:19:12

These people maybe of some help too www.arc-uk.org/

Sevenfold Fri 24-Feb-12 18:21:47

I think a lot of people do it out of fear and lack of information.

KalSkirata Fri 24-Feb-12 18:23:57

My dd has a severly disabling life limiting condition (not DS) but I wouldnt have missed these years for anything. Even a second.

Sevenfold Fri 24-Feb-12 18:24:50

so does mine(not life limiting) and feel the same way, untestable CP that can happen to anyone at birth.

LilacWaltz Fri 24-Feb-12 18:27:03

I have to say, I would worry a lot, about what would happen to a disabled child of mine after I had gone! Not something I ever gave much thought about before, not til I read a MNers post about her own worries. Scary thought with the 'cuts'

feelinghappynow Fri 24-Feb-12 18:28:26

KalSkirat can I ask if you knew before your child was born? Tell me to get stuffed but i only ask because...

We terminated for Edwards syndrome - and I doubt very much our baby would have made it to the end of the pg (dr's said not), or ever left the hospital....but I often wonder If i should have given them a chance......I was scared about how to look after the rest of the family while going through it all too...

I never thought I'd terminate in a millions years, but thinking that and actually getting a diagnosis is real life just blew me away....

KalSkirata Fri 24-Feb-12 18:28:28

it is a worry Lilac and keeps me awake at night but it doesnt stop me wanting dd to live for ever and being bloody glad she survived as long as she has

KalSkirata Fri 24-Feb-12 18:30:00

No feelinghappy and if I had known I wouldnt have terminated. Having had a baby and was told she would die within hours every single second was worthwhile. Just to meet her and be with her.
But thats just me.

PearsBeaufort Fri 24-Feb-12 18:30:55

2old2beamum - thank you for your lovely post, it was not syrupy. I had an older much loved brother who had DS, now sadly gone, and what you've said has made me think I'd like to look into adopting or working with DS children. I don't know why I haven't thought of this before. Is there an organisation or is it through usual adoption/fostering routes?

Sevenfold Fri 24-Feb-12 18:31:52

feelinghappynow sorry to hear that, you shouldn't feel guilty. you did what was best in terrible circs. sorry I know you weren't asking me.
I always thank god that CP can't be tested for. (I think imo it would be better if DS couldn't be,)

feelinghappynow Fri 24-Feb-12 18:35:22

Kal - thankyou - you're a braver lady than me - i was so scared.........it was our 2nd child and i thought i'd be a rubbish mummy to dc1 if i continued a pg that was going to end in stillbirth, but i often feel a rubbish mummy for not giving my child a chance, even for a few minutes...

learningtofly Fri 24-Feb-12 18:35:50

I had a distant relative with ds who lived to a fine age of 60 plus.

Unfortunately she did suffer in her later years with heart problems (which would now be addressed in the early years) and also dementia which I understand is common.

Saying that she had lived happily in supported living for many years after her immediate family past on smile

feelinghappynow Fri 24-Feb-12 18:38:03

Thank you seven thats why i opted for c-sections with my other dcs as i was terrifed of something going wrong if i had a natural birth.....

DedalusDigglesPocketWatch Fri 24-Feb-12 18:41:05

My little sister has DS. In my mum's case termination was considered for the following reasons:

The possibility of serious defects (heart mostly, but bowel and lungs too I believe?)

The fact that my mother was in her 40's with health problems and a single parent. She had to decide how fair she thought it would be bringing a child into the world who may end up in a home.

My little sis is 3yrs now and at the stage of a 2yr old and doing so well. She doesn't really talk having had limited hearing (which they believe is improving) but is learning makaton and signs really well. She doesn't really have any health problems either.

perceptionreality Fri 24-Feb-12 18:43:20

My personal view is that the authorities implicitly encourage terminations in the case of the baby having DS. As a result, people begin to automatically think that having a child with DS must be the worst thing ever.

There are plenty of other disablities (where the child will require just as much care) that you cannot test for so I don't understand the specific fixation on DS, although I realise these types of screening tests also pick up chromosome abnormalities where the consequences for the child will be more severe.

2old2beamum Fri 24-Feb-12 18:46:23

PearsBeaufort, you can go through your local SS but we have used adoption agencies also and on the whole we found them more proactive. If you want to do it go for it, its the best thing I have ever done. Please feel free to pm me.
Sorry about your lovely brother I expect you have many wonderful memories.

Feelinghappynow - don't beat yourself up. You acted in love for your family. Nobody could ever think that was wrong. I think you were very brave.

mrsred Fri 24-Feb-12 18:50:04

Such a difficult decision, and hopefully your friend will get news so the decision is not necessary. I don't have massive experience with DS but had some good advice from my gp when i first told him i was pg, he said that the scans we have are for detecting problems (not just getting excited over small beany baby) and to prepare some thoughts on what you would do if something came up. He also said that coping with a disability is testing for your relationship as a couple an you should fully consider all aspects.
My aunty and uncle adopted my cousin who has DS and she is absolutely lovely, got on brilliantly (as far as i know) with my other couins, health wise she hads a few problems, heart, and also went progressively more deaf. When they first adopted her, long term prognosis and life span wasn't good, but with evolving medical treatments and better drugs she is still going strong. The saddest part of it all is my aunty and uncle have now passed away, luckily she is living with my auntys widowed ds, but my main consideration if i was in a similar situation, would be what would happen if they were dependent on me and dh for care if they outlived us.

If you can find the 'Born to be different' series on channel 4, there is a gorgeous boy with DS on there. I've been following it since he was a baby, I think he was 10 in the most recent episode.

PearsBeaufort Fri 24-Feb-12 19:02:02

2old2beamum: Thank you. I will look in to this and may come back to you, thanks. We do have many wonderful memories. Btw, your nickname sounds very sad but from the sound of your post you've done and are all the best bits a mum could do and be, if that makes sense. x

2old2beamum Fri 24-Feb-12 19:05:24

But you could have a baby with no chromosome problems and have a traumatic delivery and the baby could have CP. Your baby could get meningitis with dire consequences (our youngest DS is far far more disabled
than our Down's) I am not being judgemental but it is not the worst thing in the world. Every child has a beauty spot and it is up to us to find it.

KalSkirata Fri 24-Feb-12 19:09:57

feelinghappy, dont beat yourself up. You did what was best for you and your family at that time.

Well said 2old2beamum. I love my disabled dd as much (possibly more) than my other kids. Within her abilities she is treated the same as the others and she reminds me never to end a meeting on an argument as no-one knows what lies around any corner. So each night I make sure to tell her how much I love her in case its the last one.
(she now has a monumental ego of course grin)

feelinghappynow Fri 24-Feb-12 19:15:06

Thanks all...anniversary coming up so it always feels hard at this time of year.

We have a child that would never have been born had we not gone through all of that....so we're very lucky to have DC"2"..

PearsBeaufort Fri 24-Feb-12 19:17:37

and feelinghappy, I agree with the others, of course you were not wrong, you did what was best.

I would terminate a baby with Down's or any other major complication, because while some lead fairly normal lives, some require a very high degree of care, and I do not want to be a carer. I am not prepared to give up my career and time with my existing children. If I gave birth to a child who had special needs with no forewarning, or, god forbid, something happened to a family member, I would accept the hand fate dealt me and I would care for them the best way I could. But I would never knowingly and willingly put myself in that position if I could avoid it by terminating a pregnancy. Some may call me heartless, but that's how it is.

PriscillaQueenOfTheDesert Fri 24-Feb-12 19:19:49

Down Syndrome, like any other illness can vary in the way it affects babies/children/adults.

There's no real way of knowing if your child is going to be the one with no complications or severe complications and it is that unknown that makes people decide to terminate.

My cousin has Down Syndrome. She's deaf and had a heart op when she was tiny but she's a feisty bubble smiling 20yr old now.

I didn't have the test as I knew I wouldn't have been able to terminate either way. When I declined, you could see the look of shock in the Midwifes face. (I didn't realise the test was so common that I would be seen as weird for not wanting it). But for some the unknown is scary and so I don't for one minute judge anyone who makes the difficult decision to terminate a baby who could have a possibly life limiting illness.

HumphreyCobbler Fri 24-Feb-12 19:23:46

feelinghappynow, please try not to feel you did the wrong thing. Edward's and Patau's syndrome are very very serious condition and children who have those conditions hardly ever even live to term sad

Making the decision to bear a child who is going to die is a very personal choice and one I decided not to make. I do not regret my decision, although I am sad every day that my son is not here with me.

zumm Fri 24-Feb-12 19:27:12

feelinghappy - so sorry to hear your story. you've gone through such a hard time - all the best with the anniv.

zumm Fri 24-Feb-12 19:28:22

Also Humphrey. Wise words.

ScaredyCate Fri 24-Feb-12 19:41:54

Priscilla I turned down the antenatal triple test too and my MW was so mean about me not having it done that she made me cry sad. I think most people have the tests done, and most of my friends have paid extra (not funded in our area) for the nuchal scan also, so I guess the MW thought I was weird.

feelingdizzy Fri 24-Feb-12 19:42:13

My youngest brother now 33 has ds so I find it hard to be objective in this situation am also a Teacher who works with kids with sn. My brother has absolutely no health problems and leads a productive and joyful life.he has only added to all our lives and is far less trouble to my parents than my other 4 brothers!
I do think ds suffers from some bad press and people presume the worst, my parents always say that my brother having ds was sad and they grieved,however my other brothers diagnosis of schizoprenia at 17 and subsequent alcholism drug addiction etc is the great sadness in their lives. None of us have any guarantees.
I do think ds suffers from some bad press

OliviaMumsnet (MNHQ) Fri 24-Feb-12 19:49:04

Hi there
we have moved this thread to Ethical Dilemmas
Thanks
M Towers

2ombie5layer Fri 24-Feb-12 19:59:56

My sister was born with downs 28 years ago. Unfortunately she passed Nov 2002 and was 18 (she would have been 28 this last Tues)

She did have lots of other heart problems too. I dont know the full extent, but I know she had more than one hole in her heart. During her last years she had a wheelchair as she just didnt have the stamina to walk more than 10 mins. She would always go blue in a bit of cold too sad

In answer to your question about why do people terminate, I dont personally know. I have had tests with all 3 of mine and was always given a low risk, but I always said if the risk was high Id take further tests then decide. I never knew if I would terminate because I think that id rather know even if I was going to keep the child so I could come to terms with it before the birth so when he/she did arrive I was prepared so would hopefully deal with it.

I am aware that I am in very much the minority but I always think its strange when people say they dont want to test as they would keep the baby anyway. Is it not better to be prepared as soon as possible?

smallwhitecat Fri 24-Feb-12 20:05:08

Message withdrawn

OhDoAdmitMrsDeVere Fri 24-Feb-12 20:09:56

I think it is because Down syndrome is one that it is possible to test for.
Once it is detected people are then forced to make a choice.

Down syndrome is such a wide spectrum and I think that parents are often given the worst case scenerio.

I dont judge those who make the incredibly difficult choice to terminate. Everyone must make that decision according to what they think they can cope with.

I am glad that I have never been in that position..

2ombie I am once of those who chose not to test. I had two babies in my 40s so it was automatically assumed that I would want all the tests.
My reasons were that I didnt want to start a process that would lead to more tests and more stress. The intial test can only tell you a risk. In order to be sure you would have to make yet another difficult choice - to go for more invasive tests or not?

Why put yourself through that? You cannot prepare yourself for a having a disabled child anymore than you can prepare yourself for having a child full stop.

Once a baby with Down syndrome is born the referall process kicks in on day one anyway.

OhDoAdmitMrsDeVere Fri 24-Feb-12 20:13:26

smallwhitecat um not quite the same thing though is it?

Caring for my DS2 is very different from caring for my other boys and caring for DD was nothing like caring for the others.

I dont live in a hospital now for a start. I dont spend my days administering pain killers and anti biotics and anti epileptic drugs.

My life does not revolve around clinics and hospitials and appts.

smallwhitecat Fri 24-Feb-12 20:16:11

Message withdrawn

ScaredyCate Fri 24-Feb-12 20:16:13

2ombie A bit like MrsDe I chose not to start the process of antenatal screening tests because all the test would give me was an estimate of the chances of there being a problem. To diagnose we would then need to then have a diagnostic test like CVS and amniocentesis which carry a miscarriage risk.

We had a long struggle to get pregnant, with previous losses, so wouldn't risk a pregnancy by doing a CVS or amniocentesis. So because we would not risk the further tests there was no point doing the first set of screening tests.

If there had been problems they would most likely be picked up at the 20 week scan so we'd would still have had some time to prepare.

OhDoAdmitMrsDeVere Fri 24-Feb-12 20:20:30

Well we have choice in this country and some people decide to make that difficult choice.

Others make different chocies and thank goodness we can.

ragged Fri 24-Feb-12 20:21:00

I have a cousin with DS who is now 25yo. His mum is one of my parenting mentors, I often seek her advice.

When I look at the health problems he's had, the worries he's had, the extra worries his close family have, the way he lives, the whole package of what his life has meant for him & others, I find it very very daunting. And depressing. Keep in mind his mum considers him the light of her life, btw, so it's not like his mum is being at all negative about it. The only thing she's bitter about is the way new people react to him in public.

He does not have many of the problems mentioned here (no heart defect, for instance). He has a host of other difficult things going on, though.

I agree there are much much more challenging difficulties that kids can have, though.

marshmallowpies Fri 24-Feb-12 20:21:50

I have a childhood friend who has DS and is the same age as me (mid 30s) - in her case affected just mentally rather than with any life-limiting physical conditions, as far as I know.

She had a very happy childhood and is a very bright, funny, articulate person - but she has found adult life a struggle as she went to college and subsequently had a part-time job which brought her a lot of satisfaction - then she got made redundant from it and ended up very withdrawn and on anti-depressants.

She has done voluntary work since then and has lots going on in her life, but I think because she's at the brighter end of the DS spectrum, she realises she'll never drive a car, go on holiday by herself, live independently, etc and it is very hard for her to accept these things.

This is what was probably a tough thing for her parents to face - having given her a happy and stimulating childhood, taken her on exciting holidays, ensured she got the best available education - the one thing they couldn't control was whether she could also have a happy, fulfilling adult life as they got older themselves & approached retirement.

In the end, going into sheltered accommodation with other people her own age was definitely the best option for her to get as much independence and fun as she could - but presumably her parents have to ensure they can set aside enough money to maintain this after they are gone. Making those kind of decisions as you approach retirement is probably one of the toughest things, especially if you have other children to consider too.

deemented Fri 24-Feb-12 20:31:42

Making the choice - or not - to terminate because of abnormality is a huge, huge thing, and whilst we can all say 'Oh, this is what i'd do if..' it's only when you are actually faced with it that you begin to understand the enormity of it.

And i truly believe that you can only make decisions based on the information you have at the time - hindsight is a bloody wonderful thing.

feelinghappynow Fri 24-Feb-12 20:37:53

Thank you again for the kind comments, and deemented I'm in total agreement.

We never tested, it showed on our 20 week scan.

Sittinginthesun Fri 24-Feb-12 20:38:32

I also decided against having the initial tests at 12/13 weeks. I was the only person I knew who didn't. My midwife and doctor were surprised, and made copious notes!

I didn't want to have to make a decision.

BabyGiraffes Fri 24-Feb-12 20:48:20

I had cvs when pregnant with my second dd for a number or reasons. My sister's first baby had trisomy 18 and died a few hours old - they were completely unaware that there was a problem and it took them years to recover and try again; I wanted to have a fair warning. Both dh and I are 'older' parents so the risk is increased. We worried who would look after a child with DS after we'd be gone. We worried about what caring for a disabled child would do to our relationship. I have done a lot of work with families with a child with DS and saw the effect this had not just on the parents but also and in particular for other siblings. I did not want my dd1 to be in a position to be expected to care for her brother/sister in the future. I know all about the possible health problems a child with DS may or may not face. I also know that it is impossible to predict how severely disabled this child may be. And I know that a large proportion develop dementia in their 30s, adding insult to injury.
My dd2 was born healthy and I will never know what we would have done if the cvs had shown a problem. I do realise that most of our reasons for testing were selfish, but each family is different.

2ombie5layer Fri 24-Feb-12 20:49:17

Thanks those of you who have said why you haven't tested. As I said I am very aware I am in the very minority. Perhaps thats what makes me unique to others. I would just personally rather know there was a high chance and prepare myself even if I decided not to take any more tests and keep the baby anyway. I just think it must be a big shock when baby is born and that is the first knowledge of any difficulties.

Though I must say here that I was 5 when my sister was born so not aware how much of a shock it was to my mum, but she has told me she wanted to test more, but the midwife said that everything would be fine and not to test. I think its the one thing my mum regrets is not pushing harder for more tests, she says she just knew there was something.

smallwhitecat - I think I explained myself quite clearly and I can't help but think you're being deliberately obtuse. If I were put in a position where I had to become a full-time carer for one of my children or another family member, I would do it. But I would not do it if I had the chance to avoid it. So I wouldn't hesitate to terminate. No doubt I would grow to love that child if I didn't terminate, but why put myself and my family through the hardship for someone I've never met?

The OP asked why people would consider a termination for a baby diagnosed with DS. I told her why. If you don't understand my reasoning, well I can't help that. Personally I can't understand why anyone would make like more difficult for themselves than it already is.

Dontgetpithywithme Fri 24-Feb-12 21:05:35

MN doesn't reflect the national statistics. The figs show that the vast majority choose to terminate (94%) but this is also a misleading stat as it includes those babies with DS that die in utero, which is also high. I look at it the other way - the 6% who do make it are little miracles.

I think you can look at the stats concerning DS and get frightened and only see the DS, and not the person who also has DS.

2old2beamum Fri 24-Feb-12 21:23:40

PearsBeaufort thankyou for your kind words. I will let you into a secret
--I am 68yrs (hence my name)DH 65 and given your personal experience you would be probably be welcomed with arms. We are old farts Good luck x

Booboostoo Fri 24-Feb-12 21:26:07

I think it's a very personal decision.

I used to think that I would NOT terminate in such circumstances until I volunteered with adults with disabilities and life was very tough for them and their families. Their parents, who used to be their main carers, were by now in their 70s and finding it extremely hard to cope with the demands of looking after someone who was still mentally immature but physically a grown adult. Social services support was scant and it was not clear what would happen to these people when their parents died. For example, social services were suggesting that a 40 something year old woman could live on her own with one visit a day by carers to check up on her despite the fact that she had uncontrollable epilepsy (amongst other multiple problems).

It also seemed to me that while they were children they had a good support network with school, friends, activities, etc. but after they left school they led increasingly isolated and lonely lives.

This may not be eveyrone's experience and it may not be true of everyone, but because of it personally I have changed my mind and if I knew I would terminate.

marshmallowpies Fri 24-Feb-12 21:46:57

Booboostoo your comments echo what I said above - the thought of leaving a child behind in the world with insufficient money to care for them for the rest of their life would be heartbreaking.

My friend is very lucky to have gone into shared accommodation with carers and can go back to her parents for weekend visits, but who knows what the future will hold. Her only sibling lives abroad and I do wonder if they will feel they ought to return in future to help care for her.

(I have another friend with a DS sibling who has moved abroad, partly I believe due to wanting to get away from the stress of the home situation where the parents are the main carers of their sibling. I wonder how common this is amongst brothers and sisters in similar situations....perhaps just a coincidence that I know 2 people who have opted to move away from the family).

OhDoAdmitMrsDeVere Fri 24-Feb-12 21:56:26

I think that the way things are going with the WRB things are going to get even more difficult.

Those with disabled children are in even more fear of what will happen to their children when they are gone. Its getting harder to cope even now.

Given that the Tory party are traditionally anti termination it is cruelly ironic that they may well be pushing more parents into making that decision.

My main thought on this issue is that I am very, very grateful that I have never had to make such a decision.

Theas18 Fri 24-Feb-12 22:03:40

I do think there is encouragement to terminate a possible downs pregnancy.

People with down's do, on average have a short life span and the perinatal/postnatal time can be very stormy. Up to half (maybe not that many, hazy recall!!) have heart defects and bowel problems are commoner too.

I know people with Down's of a variety of ages, including a paralypian swimmer, who's mother thought could never live independently and reluctantly put A into a group home in A's late 20s (A is not the correct initial either!) . Support was gradually withdrawn at the home with much angst on mum's part. However I nearly cried with mum when she told me A got the bus into town and took Mum for a coffee and cake with money earned from a cleaning job. It was "like a normal person would treat their mum" and she never thought it could be possible!

Your friend will need support what ever the outcome and maybe a "cool head" to look round test results. For instance amniocentesis used to be recommended at my local hospital (when I had my kids) for a risk of 1 in 250. Now I wouldn't bet much money on a 1 in250 outcome, and 249 or the 250 babies will not have Down's! (and amino has a 1 in 100 risk of miscarriage too- many more chromosomally normal babies die because of that than abnormal babies found!). It's a statistical minefield.

Theas18 Fri 24-Feb-12 22:05:29

Also remember "low risk" pregnancies may still have Down's......

A risk of 1 in 1000 or what ever doesn't mean you WONT be that 1....

2old2beamum Fri 24-Feb-12 22:14:51

Booboostoo I can see your point, however what would you do if your DC born no problems had a devastating infection or involved in a horrific accident and was rendered severely disabled ----kill them I am sure you wouldn't

Jux Fri 24-Feb-12 22:15:54

I have a relative with DS. He's in his late 40s now. When he was born, life expectancy was much lower for people with DS but medical science has moved on in leaps and bounds, and I think that generally life expectancy is now about the same as anyone else.

He was a gentle, kind and affectionate child and now he's a gentle, humorous and very kind man; definitely worth having him in our lives.

allthequeensmen Fri 24-Feb-12 22:19:35

Its basically state-sponsored eugenics.

Watch this video, try to imagine none of these people have speech difficulties and then tell me these humans were only worthy of abortion www.youtube.com/watch?v=gLpKy5I7whw

Oh and my brother has DS, no health problems here either (though a severe learning disability). I can't even begin to tell you what he has brought to my life, its a love deeper than any other. Everything I am I am because of him.

2old2beamum Fri 24-Feb-12 22:22:27

Jux YAY YAY X

Sevenfold Fri 24-Feb-12 22:26:27

Theas18 good point.
I had a low risk pregnancy, twas a doddle
so was the birth, nhs cocked up, I now have a severely disabled dd.

learningtofly Fri 24-Feb-12 23:13:02

I have written several posts to this thread, all of which I have deleted because I can't articulate well how I feel.

If you had asked me exactly this time last year my posts would have been different. But life throws you curved balls at strange times and I found myself in a position I never thought I would. With. decisions to make that I never thought I could.

My situation was different, bewildering even, but then I made the best decision I could at the time. There are pros and cons against it and I can't condone anyone who takes the time and effort we did to look at it from all angles and hope for Tue best.

Op I wish you all the best for supporting your friend

feelinghappynow Sat 25-Feb-12 07:45:32

learningtofly sounds just like me

Anyway - as I said early on, there are different scenarios that people face..

Would I terminate if i had an unborn child with DS, who would be able to live for years, all be it with some health issues and medical treatment - No way!

Would I terminate if I had an unborn child with DS who was unlikely to last the pregnancy nevermind birth... - Yes!

It's not the disability in question for me, it is the severity of it.

We did for chromasome problems and other complications after 20 weeks - i couldn't face watching my tummy expand knowing my child was never coming home, and waiting for the day of the stillbirth to arrive, of our baby to be born and spend time in NICU waiting to die. I couldn't face questions from well meaning friends, aquaintances and strangers about whether i had decorated the nursery, bought my baby items etc....no point as baby is not coming home. I would have been a psychological mess trying to run a family and house day to day while waiting months for the inevitable. This is not something I had ever comtemplated in my life before having children when pondering the abortion issuse.....but it's a fine thing to 'ponder' when it's not happening to you.

Many couples face what we did, and carry on the pg. Hats off to them - wish I had their strength....

feelinghappynow Sat 25-Feb-12 07:46:59

learning I don't know your situation, and you could well have done the opposite to us, but the 'curve ball' is the same...

FanjoForTheMammaries Sat 25-Feb-12 07:54:38

That's my DD screwed then in 40 years as we don't even have another child to look after her (or move abroad to avoid it hmm the milk of human kindness)

Shame her chromosomal deletion couldn't have been tested for antenatally.

Actually, no, because she is beautiful and I love her to bits, she is a human being like any other and not some political/ethical dilemma, or a burden.

feelinghappynow Sat 25-Feb-12 07:58:34

And I'm sure I would have loved my child, had they been well enough to suvive the pregnancy - thanks fanjo!

FanjoForTheMammaries Sat 25-Feb-12 08:02:20

Well clearly I didn't mean a child incompatible with life as my DD is lave, my post was not directed at you, but others saying they would terminate as the child would have noone to care for it, as I said.

So no need for the passive aggressive 'thanks' directed at me hmm

FanjoForTheMammaries Sat 25-Feb-12 08:03:38

Lave=alive

It's awful what happened to you, clearly, doesn't make me evil for my opinion though

blacktreaclecat Sat 25-Feb-12 08:04:54

I'm probably going to get flamed on this thread. It doesn't reflect the reality that over 90% of people with a t21 diagnosis terminate.
We had that heartbreaking diagnosis. It was the worst thing I have ever been through in my life but I know we made the right decision for us.
And I will be requesting an ELCS this time as I am worried about the risks of cerebral palsy etc.
If our precious baby once born is poorly we will deal with it. But to go through with it with everything stacked against it at 13 weeks gestation was not for us.
I admire those who do go through with it though. It is a difficult decision and not for anyone else to judge.

feelinghappynow Sat 25-Feb-12 08:05:09

Sorry - I felt after i'd just spilled my guts about our termination it was directed at me.

Sensitive issue and bad time of year.....apologies - i'm off to read about kitchens and dresses or something more cheery!

FanjoForTheMammaries Sat 25-Feb-12 08:06:59

Hey it's ok, it's sensitive for me too..wink

I do have the utmost sympathy for you and would have done the same

Have a hug

FanjoForTheMammaries Sat 25-Feb-12 08:09:45

Blacktreaclecat I'm not flaming you, you did what was best for you.

The 90% figure does make me sad though, it makes me sad that kids with disabilities are seen as so undesirable

FanjoForTheMammaries Sat 25-Feb-12 08:13:02

I guess it's unrealistic that society will ever see disabled kids as equally valuable but to me my DD is.

feelinghappynow Sat 25-Feb-12 08:14:42

Cheers Fanjo - i totally agree with you.....there are tons of conditions and diganosis i'd have 'rather' had - we just got the worst possible, and one I never imagined in a million years....i was prepared for disabled to some degree - but not 'incompatible with life' ...

Cantdothisagain Sat 25-Feb-12 08:33:17

I just wanted to echo what someone just said: that the problem with this question being placed in 'ethical dilemmas' (I know it's here to avoid people being upset by it on the main boards and I understand this completely, so not criticising this move in itself) is that the women making the choices, and the babies whose fates are being decided, are people, not ethical dilemmas, and it hurts.

I say this as someone who has terminated twice for (different) fatal foetal abnormalities, once at 13 weeks and once at 20 weeks.

I do agree that the nuchal test ought to be explained further before it is offered. I had it with DD1 without even registering properly that it was anything other than a standard dating scan (my fault for not reading everything properly - but also, that was the standard offering,so I would have had to actively decline it). I would never decline it now, not because I am terrified of DS, but because it also shows up other trisomies. However, I note that all the blurb I received emphasized Downs - and there was no blurb about Downs itself, so the blurb makes it sound like the most horrendous thing that can happen. And also having a low-risk nuchal doesnt mean no problems. But also people around me seem to see the anomaly scan as a gender scan, whereas for me it was when I went in to find out my baby had bilateral renal agenesis which is incompatible with life. Obviously even having clear anomaly scan is no guarantee; things can go wrong later (eg for a friend of mine whose baby needed brain surgery after birth, not picked up on until baby was born).

I support women's right to choose, but I do agree that we need to understand the choices we are making, and these are so culturally entrenched in attitudes to/prejudices about disability. And I'm still not sure I like the idea of it as a hypothetical ethical dilemma.

Cantdothisagain Sat 25-Feb-12 08:37:00

Actually what I wrote is potentially confusing and offensive: I should have said 'foetuses' not babies. I think I said that because my two terminations were medical, ie I effectively gave birth, and held and said goodbye to my babies and to me they felt very much like babies, who I gave up because they couldn't have lived anyway. But this is my experience only and obviously foetuses arent yet babies; I apologize for causing upset, as I do genuinely get that this is a painful subject.

learningtofly Sat 25-Feb-12 09:03:36

feelinghappynow our situation was probably similar - I feel pregnant whilst taking medication that is protein based and changes the way cell multiply. The known births whilst taking this were few and none in this country - the known outcomes were frankly appalling. It would have extraordinarily difficult to proceed when both the medical profession and the drug company felt they couldn't support us.

There isn't a week goes by that I wonder what if? But you can't live a life like that otherwise we would rapidly lose our sanity. All you can do is try your best and make the best of a rubbish situation

learningtofly Sat 25-Feb-12 09:13:14

For us though, it wasn't the disability as such but the worry of the total unknown with the only guarantee being there weren't any.

I was most worried about pain Tbh. The thought of a small child in pain was just unbearingly awful. Which actually was silly as there wasn't any indication that pain would be an issue

KalSkirata Sat 25-Feb-12 10:55:38

I think there needs to be more education about disabilities and more inclusion. If you knew adults with DS and children it would be less scary (in fact, among those who do know ppl with DS, termination rates go down)
Bringing any child into the world is a risk. And one day you will die and leave that person alone. Any child can become disabled, at birth, at 3, at 10, at 45. To be honest, I'm suprised anyone risks having children!
But if we lived in a society with full inclusion and support whatever abilities a person may have, with kids with DS, cerebral palsy, learning disabilities etc in mainstream nurseries, schools, colleges and universities. In your workplace I think people would be less inclined to terminate. Heck, we feel uncomfortable if someone terminates for the wrong gender. Why isnt it the same for the wrong 'ablity'?

dd was brain damaged at birth but the amount of people who say, in front of her, if you'd known when you were pregnant you could have got rid is not only insulting but an indication of the prevailing attitudes sad

2old2beamum Sat 25-Feb-12 12:08:29

Well said KalSkirata. None of my homegrown DC's had any tests as they knew the real side of disabilty. WE do need full inclusion not tokenism before people accept disability and appreciate that they do contribute to society.
Also as I said previously life can be cruel nasty things can happen at any
time not just at conception
On people making comments in front of your DD or behind her back are despicable I would want to thump them. A lot of severely disabled people have far more understanding than we give them credit for. I have many anecdotal? tales

I think your friend needs to weigh up what's best for her and her family. Look at worst case scenario as well as the best there is. Look at all the other issues/problems that can come alongside DS. She also needs to remember it doesn't matter how much you try to prepare yourself, there will always be something you are unprepared for, DS or not. Life is hard with kids anyway but it is harder with a disabled child plus they come with a lot more paperwork and homework/brainwork/thinking from the parent. It can be more emotionally and physically draining on the parent. As with everything there are pros and cons.

Good luck x

learningtofly Sat 25-Feb-12 13:23:41

To some extent though its about changing peoples perceptions on quality of life. You see it in all areas and times of life and by its nature is very subjective.

edam Sat 25-Feb-12 13:35:13

Everyone is entitled to make their own decision. You don't know how badly any individual with Down's will be affected. Some people have heart or bowel or other physical problems that can be treated. Some people are high-functioning in terms of learning disabilities. Others are not and I'm afraid have a miserable time of it.

Even if the individual is fine as a child, I'm afraid people with Down's who survive long-term have a hugely increased risk of dementia in their 40s. It is not a trivial condition or set of conditions. Some women may decide they would love their baby whatever and cope with all the physical and mental effects whatever they are, some may doubt their ability to cope or the quality of life their baby would enjoy.

The sad thing is testing cannot even predict accurately whether a foetus even has Down's much less how badly they will be affected - it's all about risk.

I share AnnieLobeseder's personal views on this. I think, for me personally, if I knew I would personally feel I am not make of the stuff needed to care for a person with a disability for the rest of my life. Obviously if I had to, I would, but if I had the choice not to, I would take it.

The reason being that I do not think I am strong enough or patient enough to provide top level care for a child who is never going to gain independence and leave home, so it would be kinder on the unborn fetus, my existing DS (who has ASD) and my partner and myself if I were to terminate. That is my choice though and I am glad I have it, and respect and admire those who feel strong enough to make different decisions.

I am a Special needs teacher, and I work one to one with a lovely girl with DS, and I just view her as normal, to me anyway, her DS is most certainly not her main characteristic.

I agree about changing people's perceptions but it's also about the quality of life the child/person who has DS is able to have as well which may also be hard to take and care for.

KalSkirata Sat 25-Feb-12 14:14:50

How do you measure quality of life? Peope look at dd and assume because she cannot move or speak she doesnt have fun. She does. Lots of friends, plays football, hobbies. Of course she has to go through medical stuff too but so do many non disabled kids.
The assumption is the quality of life for the child is terrible. Often its pretty good, only bad for the Carer. That should be addressed

It's like you said KalSkirata, OFTEN it's pretty good, only bad for the carer. I agree whole heartedly, however it's the lives of the ones that are NOT OFTEN pretty good that's even harder.

2old2beamum Sat 25-Feb-12 14:50:29

A few years ago a paedatrician asked me what could he tell a new mum the positives of DS
1)will not murder anyone
2)will not mug old ladies
3)rarely will steal for personal gain
4)will not come home drunk and puke all over place
and the list goes on.
My 3 DS's have travelled the world, love life and bring joy to all who know them. And their sense of humour is evil

I am the parent of an 11 year old who happens to have down syndrome. I would not wish his life or ours on my worst enemy. As for will not murder anyone, when he gets into his uncontrollable rages he will murder someone one day.....................will that day be the day we all get help?

Not something I wanted to post as I try to argue from a middle ground and not bring in personal expreiences.

KalSkirata Sat 25-Feb-12 15:00:52

what is the actual range of DS. How common or likely is the severe end? Lad next door is 15 with DS and of to college next year. He's happy enough but its complicated by autism. Now my ds isnt disabled but his autism caused bloody misery for years. Not now though.
And dd1 has nothing wrong with her but caused more misery than the other 3 put together as a teenager sad

2old2beamum Sat 25-Feb-12 15:07:45

Sorry devientenigma, perhaps I have been very lucky as most of friends in the same situation. I wish you and your family all the best. I am afraid I always look at life through rose coloured specs drives some people mad

I do believe I am a minority, in fact I have been told this by parents of DS on here, however my point is you don't know if you are next. Like it's already been said it's a risk.
My son is the 2nd in the family born with DS, although there is a few more with other SN. As also said earlier I was also tested for DS ante nataly and came back low risk, yet I was the one lol.

No need to apologize 2old, we get what we are given, in fact I had a giggle at the not stealing as mine can't go anywhere without taking something when he leaves, regardless of where and what, sometimes we don't even see him do it.

2old2beamum Sat 25-Feb-12 15:26:49

KalSkirata am not an expert except on my 4 (1 sadly died) DS son 30 not the brightest, little speech deaf but is so kind and thoughtful it makes me want to weep, 2 girls 27 & 23 quite academic but sometimes haven't the sense they were born with, both have voluntary jobs. Son not able to work due to epilepsy but is brill at housework. TBH I think their quality of life is so much better than little brother 13 CP deafblind and sister 6 with rare syndrome.
Best wishes

OhDoAdmitMrsDeVere Sat 25-Feb-12 15:42:26

The children I work with who have DS nearly all go to mainstream primary. A lot go to secondary but may transfer after a few years to SN S.

But I also see the other end of the DS spectrum with PMLD plus ASD and all kinds of health problems.

The tests cant tell you where your child will be on the spectrum.

I think there is a particular stigma attached to DS because it is a visable LD and most of us grew up knowing the older child with DS who lived with elderly parents etc.

It is also detectable but not curable so the implication for dectecting in the first place is so that you can terminate.

We live in a society firmly intrenched in the Medical Model. So if it cannot be fixed it must be removed.

There are so many, many conditions that cannot be detected prebirth and are 'worse' than DS (my inverted commas because I am stuck for finding a better word). Yet the focus seems to be so much on DS. When i was pg with DCs 4&5 it was like this stuff was being forced on me and shouting at me from all the information in ante natal clinic.

If I was a person with DS I would feel that I was deemed unworthy of life. What must it be like to see that stuff?

I swerved it all by not having any prenatal testing. That could be seen as a cop out I suppose. I didnt want to have to make the decision.

devient a few years ago my experience of DS was with placid, friendly children. I now know that there is far more to DS than that image. It is perhaps ironic that there is such a push to terminate prebirth but once a child is born there is the sterotypical image of the happy, loving and agreeable child with DS.

I think there is a general need for much more education about disability. Our society is pretty rubbish at that sort of thing. Drs get little or none as part of their training. I used to do talks to midwives and I think I was pretty much all they got shock

For me, the choice isn't about the quality of life the child would have (or not have), but the deterioration of my and my family's quality of life. Obviously if something were to happen to one of my DDs or DH, we would deal with it. But I wouldn't bring a child who would need constant care into the world if I had a choice to avoid it because of how it would affect those of us already here.

latedeveloper Sat 25-Feb-12 18:58:13

My dsis had ds and is in her thirties. She is in great sheltered accommodation and does loads of activities - all funded by the state. My elderly parents supervise her care and have her stay for christmas and the odd weekend. When they can't do this I will take over -an extra responsibility for me but not a life changing one.

This funded support is the norm for adults with severe learning disabilities. Yes I worry about the cuts but so far local authorities have a legal obligation to provide this support.

I wondered what I'd do if my dc tested positive in pregnancy but never had to make the choice. But by 3 it became obvious my son had sn. 3 years on nobody knows why and it is likely that he will never be independent.

Booboostoo Sat 25-Feb-12 19:31:53

2old2tobeamum: in answer to your earlier question I do think there is a significant difference between terminating a foetus and killing a child/adult. I appreciate not everyone sees it that way, but to me it's a different question so if my DD had an infection/accident/illness and became severely disabled this would be a different decision than if I knew I was carrying a foetus with a similar disability.

KalSkirata Sat 25-Feb-12 19:37:44

sometimes it effects siblings in a positive way Annie. Mine learnt to be more independant. They now know that disabled people are people and to speak and treat them the same. You'd be astounded at how many friends kids treat dd like some sort of dress up doll or mascot. And not a real person.
Kids are resilient. I just asked ds1 and he said he is glad she was born. he does wish she could walk and talk (she is far more disabled than the average person with DS) but on the whole he says he has learned stuff he wouldnt have.

2old2beamum Sat 25-Feb-12 20:04:23

Sorry Booboostoo I was a midwife and I felt a fetus was the stage before baby just as a baby was a stage before a toddler. We had a fetus/baby born @24 weeks he died 13years having had a very full life albeit different. I know are views are different but think we both care as all do on this thread. I feel I must be honest we do not come from the same angle as most parents as we have adopted 8 with special needs age 30 to 6. I hope my views would be the same if they were my birth children but who knows?
.

MarthasHarbour Sat 25-Feb-12 20:19:46

I apologise as i have not read the entire thread but...

I went through the same anxieties when i was carrying DS. My test results came back low risk and he was born without DS.

Whilst i was waiting for my results coming back i was in bits, I felt that i couldnt give the lifelong commitment and care as has been said before. And i felt like shit. My BIL works with children with special needs and i knew he wouldnt ever forgive us for terminating a child with DS, but that is what we were going to do if it came to it. We knew we were being selfish but we had to be honest with ourselves. I know that if DS had been born with downs without prior knowledge then we would have given him the same love anyway, that wasnt the point.

Whilst i was waiting for my results i was chatting to DH's family friend. She is in her 60s and has one child with DS and one child with special needs (i am not sure what it is as i dont know her daughter) Her son with DS is 40 and is adorable. I was chatting to him then went on to chat to his mum. She quietly said to me that she loves her DS with all her heart, but (in her words) 'You are lucky, you can find out nowadays' She then looked me in the eye and said 'I didnt get that option'. (of course her son was out of the room when she said this)

Please dont judge her, she is a loving mum and adores her two DCs. I think she was subliminally saying to me not to worry about any choices i make - FWIW i didnt tell her i was waiting for the results, but she is a medical professional and knew what stage of PG i was.

I will never forget that conversation, i never judged her.

I have also never shared this story with anyone (other than DH)

I wish your friend all the best with her pregnancy smile

KalSkirata Sat 25-Feb-12 20:27:22

I often wish dd wasnt disabled but Id rather she was and here than not here.

2old2beamum Sat 25-Feb-12 20:42:13

Well said KalSkirta, wonder in future Dementia etc could be diagnosed prenatally how many of us would be here? Sorry to be flippant.

KalSkirata Sat 25-Feb-12 20:49:47

look at your envelope 2old!
Gawd can you imagine testing that would pick up who got cancer (1 in3) but not when.
Could be 3 (dd is at a party today with a 3 yo who has cancer and isnt expected to live). 13, like my friends lad, 23, 37, 68.....
I think testing is a double edged sword.
dd is life limited. Every single second has been and is precious despite the stress, lack of sleep etc. If we woulnd time back Id do it all again.

OhDoAdmitMrsDeVere Sat 25-Feb-12 20:51:11

2old2be I wonder if I would feel any differently if my DS2 was my birth child. A lot of birth parents seem to feel huge amounts of guilt regarding their DC's disablities. As adoptive parents we dont have that.
I do have some guilt because I always feel i could be doing more to help him but I dont have that 'was it something I did' that birth parents beat themselves up with.
I wonder if that makes things a little easier for us?

DD was absolutely perfect and was rarely ill. she was a golden child. Then she got sick and became very disabled when she was 12. No warning, no tests, it just happened like a bolt out of the blue.

What would I have done if they did a prenatal test for childhood luekmia? Balance out the earth shattering heartbreak of watching her suffer and then die against the 12 wonderful years I had her for?

This testing stuff just seems to bring dilemmas and few solutions.

Sevenfold Sat 25-Feb-12 21:41:12

I do hate it when people use existing children as an excuse.
please don't lay the blame at their door.
my ds adores his severely disabled sister, yes he has missed out on stuff like holidays abroad and silly stuff.
but he has gained so much more.
don't under estimate your children

KalSkirata Sat 25-Feb-12 21:44:10

well said seven

2old2beamum Sat 25-Feb-12 22:01:48

MrsDeVere I agree this testing stuff does not enhance our lives as KaliSkirata says cherish every moment.
I know you would feel no different if DS2 was your birth child and I am so sorry about your golden child. 3 of our adopted DC's have died J & A had short life expectancy but S didn't I still feel so guilty I am still devastated. Never spoken about this before but life goes on and I have others to care for and I love them all so much the same as my homegrown.All of you take care and keep fighting.

OhDoAdmitMrsDeVere Sat 25-Feb-12 22:07:12

I am so sorry for your losses.
Its just the worst thing ever.

Four4me Sat 25-Feb-12 22:14:58

Such an interesting thread, have enjoyed reading everyone's opinions.

OP hope your friend has plenty of support at present.

When our ds1 (dc1) was born at 35 weeks and the medical team broke the news that they thought he had downs syndrome I was devastated. I think it was because of all of my preconceived ideas of DS. Young adults in bad anoraks with bad haircuts following elderly parents around the supermarket! Forgive me I was only 26!
I describe the problems that people with DS can have to others is that children/adults with DS have exactly the same medical problems as the rest of the population, but they are more likely to have these problems, ie heart defect, glue ear, cataracts, dementia etc etc. And yes they do have differing levels of Learning difficulty/special needs.

Ds1 did indeed have DS, we have gone on to have 3 more dc (4 was always my 'number'). We decided to skip the scan screening and had cvs's for the subsequent babies. I just needed to know. Can honestly say I don't know what decision we would have made if the results hadn't come back as 'genetically normal'. It has been tough and I'm sure there is more to come (ds1 is now 8) proud mummy- look at my photos if you want a nosy!!!

He is simply ace and can't imagine our family without him.

If she was my friend I would just listen to her worries and if you think it may help point her in the direction of mn, as you have seen on this thread she will get balanced, sensible and nonjudgemental support esp on antenatal choices board.

2old2beamum Sat 25-Feb-12 22:34:32

four4me what a lovely 'photo gallery yes most DS are great can't do that page...too old1

nooka Sat 25-Feb-12 22:56:47

We have several disabled children in our family, and I always said I would never have any tests. I've finished with pregnancies now, but my view of Downs as being a minor disability has radically changed watching my niece grow up. She is quite healthy but very very seriously disabled (at 16 she has a developmental age of about 18 months). She is very very loved, but it has had a profound effect on her immediate family and I think that I would find it very difficult if I were placed in a position where I had to choose myself. Of course having children is a big risk regardless, and things like accessing appropriate support and education can be much harder with a less profoundly disabled child (even more tricky for adults).

If the right levels of support (education, therapy, respite care, finance for adaptations, opportunities for recreation and hobbies, supported housing and jobs for disabled adults, enforced anti-discrimination law and widespread education being just a few of thing I think are in short supply) were easily available then things might be very different of course, but life for parents/carers of disabled children and adults is not I think in any way shape or form easy. I am certainly aware that my life parenting my children is by many measures easier than my sister's life parenting her children. Please don't get me wrong my nephew and niece are lovely, but it would be foolish to pretend that the complications of their disabilities are at times very very challenging.

Sevenfold Sat 25-Feb-12 23:04:37

but nooka as long as people see disabled as being second best that won't change.
having a disabled child is not the end of the world.

KalSkirata Sun 26-Feb-12 10:17:04

'If the right levels of support (education, therapy, respite care, finance for adaptations, opportunities for recreation and hobbies, supported housing and jobs for disabled adults, enforced anti-discrimination law and widespread education being just a few of thing I think are in short supply) were easily available then things might be very different of course, but life for parents/carers of disabled children and adults is not I think in any way shape or form easy.'

And until those who are unaffected and think it wont happen to them campaign alongside disabled people and carers the provision will remain poor. But sadly I see little of this.

2old2beamum Sun 26-Feb-12 11:11:33

Who is going to change their minds? They have no idea they wouldn't last 5 minutes in our shoes. I find people think the disabled embarrassing or cute don't know which is worse

jshm2 Tue 28-Feb-12 11:43:28

Termination is usually only considered if the abnormalities are too great for the child to make it past a couple of years of life.

Many suffers have mild conditions and few live to any great age but tend to get by OK with not too intensive care.

Then you have the life long dependent suffers who can be a handful both physically and mentally but social help and respite care tends to make it a bit lighter for the parents.

Children with large heart defects and severe abnormalities are usually the ones considered by the medics for termination. The reason being only a few percent make it past a couple of years of life and suffer greatly for it in life support.

Sevenfold Tue 28-Feb-12 12:04:55

how does anyone know for sure that a baby will only live for a couple of years, and even so isn't taht better than nothing

AlanMoore Tue 28-Feb-12 12:17:49

Shocked that people found midwives unsupportive of declining certain screening.

Declined triple test in my 1st pregnancy and then this time nuchal fold was available, which I also declined. My mw was totally supportive of this.

I am totally pro-choice when it comes to screening and to decisions following results and am sad that there are mws who might not be. It is a very individual decision for so many reasons and surely HCPs should only be supporting this decision making process, not judging it.

"until those who are unaffected and think it wont happen to them campaign alongside disabled people and carers the provision will remain poor" - this! We are all only an accident or an illness away from disability and would be a much better society if we remembered that.

ragged Tue 28-Feb-12 13:27:36

how does anyone know for sure that a baby will only live for a couple of years, and even so isn't taht better than nothing

Not if it can only be achieved with a huge amount of painful & probably quite distressing (& dangerous) medical intervention. If you're thinking that the only way your child will have any life is with lots of suffering, then no way. I couldn't easily face that.

My family experience of Downs Syndrome is like yours, Nooka.

KalSkirata Tue 28-Feb-12 17:22:12

I was told dd would live days or weeks. Doctors get it wrong all he time. And it doesn't sound like Nooka's neice is suffering. Lots of kids have operations, or a series of operations. Children are pretty resilient.
People might look at the 8 hour op dd is facing shorlty and say she is suffering. She isnt. I can hear her yelling with laughter in the other room.

Sevenfold Tue 28-Feb-12 17:23:30

KalSkirata oh yes that word...sufferer/suffer.
horrid,

vixsatis Tue 28-Feb-12 17:30:46

tooold2be -The world needs more people like you!

2old2beamum Tue 28-Feb-12 21:49:43

Thankyou vixsatis round here there are quite a lot of us all old and decrepid but really care---off to do medicines.

asiatic Sun 08-Apr-12 00:57:17

I don't think termination is a decision any woman takes lightly, I would try to support a friend who chose to terminate, or a friend who chose to carry the pregnancy through.

I chose not to have tests done when I was pregnant, thinking I would never terminate anyway, even if the tests were positive., andthat would be morally wrong. I was so ignorant and nieve.

Now I've known so many more children and adults with DS or similar conditions, all I could do with a friend trying to make the decision would be thank God it wasn't me. It's an impossible choice, you are likely to spend the rest of your life wondering if you have chosed wrongly, either way.

eidsvold Sat 14-Jul-12 10:12:16

most of the reasons I have seen given revolve around the person with ds being a burden on the family, existing siblings. There are some health issues that can be serious and part of having down syndrome BUT that can exist where there is no diagnosis of Down Syndrome. People think they are unable to parent a child with ds. I think people remember the stereotypes of their childhood and the scary worst case scenarios. Statistics show that parents who have an awareness of and correct information surrounding down syndrome are more likely to continue with the pregnancy.

FWIW - I am the mother of a child born with down syndrome and a heart defect. After surgery her heart is like a 'normal' one. Except for a recent bout of pneumonia - again lots of kids without ds in the hospital with that one - she is an incredibly well child. Her heart defect is the most common found in children with ds and it is easily repaired despite being very very serious iyswim.

As to siblings - as I type this she is sitting at the table with her two younger sisters and they are all being silly - the worst - not the child with down syndrome.

She attends a mix of mainstream and special school, she is able to attend before and after school care as I have returned to full time work - I did it when she was one and then again when her siblings started school.

Sure there have been times when it has been hard work but tbh her sisters are harder work than she is and they are not sn. I do not look at her with blinkers on and I am in no way a saint! I am simply her mum.

HellesBelles396 Sun 10-Feb-13 13:27:15

my uncle has ds as does my cousin's son. apparently there's no reason why they both have.

based on my uncle, I always thought I would terminate a pregnancy if the child had ds. my uncle was very very violent as a younger man and stole frequently. he was one of the care in the community experiments in the 80's and has lived in squalor since. he has been mugged and stolen from many many times. he refuses any offers of support - even warden-housing - he is now in his 60's.

my cousin's son was born when I was 15. his dad said (when cs was maybe 2 or 3) that every morning he woke and felt a weight settling on him. they grieve for the child they thought they would have (they'd been trying for ten years) and, even though they love their son, knowing he will aways need residential care (he is 19, profoundly deaf with maturity of a 7 or 8 year old, frequent severe chest and gi problems) hurts them. his elder sister intends to take over his care when their parents are no longer capable and, of course, we all help too but still.

anyway, because of my family history and despite being 22, I was supposed to have an ac but had a huge panic attack. I was scared of the 1 in a 100 chance and that told that, no matter how certain i was I didn't want a child with ds, I wasn't capable of an abortion. my son was fine.

Dervel Sun 07-Jul-13 10:28:06

I volunteered at a special needs school. There was this amazing little boy with downs, and leukaemia. However he was happy because he was loved. The school environment was incredible, as was I presume his home life. Was his life normal? (Whatever that means anyway) probably not. Was his life significant? Absolutely without question. Both he, the other children and the staff at that school taught me a great deal about life and what is truly important. It was a privilege being there.

Branleuse Sun 07-Jul-13 10:31:48

because people usually hope their children will grow up to have fully functional independent and reasonably normal lives. They dont want to go into parenthood knowing that there is a good chance the child will have health problems, learning disabilities and will never be able to leave home or be without a carer.

I would terminate for downs

Bodicea Sun 18-Aug-13 15:33:38

I think Down's syndrome is fine when they are children. They can be a lot of fun. And whenever there is this kind of debate on tv they always brig out the cute Down's syndrome child. But they are often at the higher end of the iq spectrum.
But they gloss over the fact that day is usually a life sentence for the parents. They live well into there sixties and very few are fully independant. these children are never going to fly the nest. If they do they need a lot of care in he community etc. I have seen so many tired looking 70/80 year olds bringing in their Middle Aged ds children for hospital appointments. It can often be a traumatic affair. They are supposed to be in their twighlight years enjoying a well earned rest and I feel for them.
Here is no wriht of wrong. Just need to understand the full long term implications of having a day child and what it entails x

Bodicea Sun 18-Aug-13 15:34:31

Please excuse fat finger typos x

mrspaddy Sun 18-Aug-13 15:43:35

I wouldn't accept a test for DS - I don't judge other people but for my own personal and religious reasons. I know the health implications, I have done a lot of research (Post Grad), know a lot of families and I absolutely feel that no two children are the same. I think attitudes have improved thankfully. Friends of mine say the stigma and pass remarkable comments from 'well meaning' friends are the hardest thing to deal with. I have found that it is harder for older parents - they worry about the future and on a practical level, when siblings leave home - having company for their child who has DS (rural area).

Some of the best people I have ever met, who have made a huge impact on me happen to have DS.

WestieMamma Tue 20-Aug-13 21:05:08

The test isn't just for Down's, if I remember correctly. It also screens for other truely terrible genetic disorders.

I never thought I would terminate a pregnancy, for medical reasons or otherwise, and didn't have the screening for DS with my first baby. At my 20 week scan a heart defect was picked up (AVSD and some partial blockage) and I was informed it is often linked with DS.

Just the thought of my baby needing open heart surgery alone, and whether she would even make it to term or be strong enough for the surgery, was a lot to take in and imagine putting a tiny baby through. To then find out that my baby had DS and this could impact on her prospects in terms of health alone was, in my eyes, putting my baby through something I wouldn't want for myself or anyone else who I loved.

The sad thing is that people talk about how loved living children with DS are like people like me don't love our babies that we chose a different path for. My baby isn't a shameful secret. I tell everyone about her. Her photos are in my house on display. She's just not here in my arms and that decision was made purely from compassion and love for her.

Unfortunately, I am also all too aware of the constant cuts to services for adults with health needs (I'm a student social worker on a integrated health care team). I see families at breaking point who are struggling to support their relatives with their health needs, whether DS or any other condition. That is no quality of life for anyone.

You can't guarantee what kind of hand you will be dealt in any pregnancy, whether seemingly healthy or not, but if you have enough information to know the odds are not in your child's favour then I see nothing wrong in showing them compassion and letting go of them. I love my baby with all my heart and I would have loved her if I had never known about the DS or heart defect before giving birth to her. What other people choose to do in my situation is none of my business and I know they would also be making their decision out of love for their baby. I wish people with disabled children/relatives would not assume I didn't love mine!

Thewhingingdefective Fri 11-Oct-13 14:22:16

I have a friend and a cousin who both have little boys that have DS. Neither of them knew until their babies were born that they had DS as they were low risk when screened and no DS indicators were picked out at scans. I know they adore their delightful children, but I have no idea whether they would have continued with their pregnancy if they had known their babies would have DS.

I think some people feel unable to provide everything that a child with potentially severe special needs might need and think it would be fairer to terminate. Must be a hellish thing to go through.

AngelaRegrets Tue 03-Dec-13 18:18:54

I would terminate without a second thought. I've seen too many families who have dealt badly with the birth of a child with SN and they have allowed it to skew the family dynamic so that the marriage suffers and breaks up, the other children have to fit around their disabled sibling and are neglected and resentful, and the SN child is made into a little god and turns into a giant PITA. (And that's when the child is young - what about when they get older, the parents get older and frailer, the sibs have their own kids to look after?) I should know, I grew up in a family like this and I wouldn't wish it on my worst enemy. I know I couldn't cope with it. Some people could cope with it and good for them for going ahead, but abortion isn't the same as killing a person who is already here IMO. I realise that there are lots of things that can lead to disability and it's unfair that DS, which can be so varied in its effects, can be tested for and other things can't. Sorry to be so grim and huge kudos to those who have made their families work under these conditions, but I've lived (still am living) the dark side of this.

FanjoForTheMammaries Tue 03-Dec-13 18:33:43

What a great thread to resurrect.

Kids with SN are people and not some kind of curse.

AngelaRegrets Tue 03-Dec-13 21:46:03

Fanjo You're right, I should have left this alone instead of making everyone feel shit before Christmas!! Something resonated and I had my say, yes of course they are people! (which means of course that there will be difficult ones as well as sweeties). Sorry if I sounded like a bitter old cow.

FanjoForTheMammaries Tue 03-Dec-13 21:49:31

Its OK.

FanjoForTheMammaries Tue 03-Dec-13 21:51:19

(Although we cant just terminate people because they will be difficult..mind you that's a whole new thread right there)

Juliet123456 Tue 03-Dec-13 21:51:23

Message deleted by Mumsnet for breaking our Talk Guidelines. Replies may also be deleted.

FanjoForTheMammaries Tue 03-Dec-13 21:54:07

You suspect it was for the best she died because she had DS?

I bloody hope views like that are in the minority.

FanjoForTheMammaries Tue 03-Dec-13 21:57:53

Absolutely abhorrent

moldingsunbeams Tue 03-Dec-13 22:04:01

There are two children with downs syndrome in our street.

1, Has few health problems and will live independently in sheltered accommodation of some sort.

2, The other has no language, poor vision, poor hearing and major heart problems and is likely to need life long care.

Both are amazing.

Bunbaker Tue 03-Dec-13 22:07:23

I would never judge anyone who had a termination as I have never walked in their shoes.

I was 41 when I fell pregnant with DD. I was going to have an amnio, but my bloods came back as low risk. Thinking about it afterwards I am glad I didn't have to make a decision, and thought that I would love my child regardless.

A few weeks after DD was born she developed a life threatening medical condition (which has now, thankfully, resolved). I loved her all the more for being more vulnerable. However, I decided that if I ever got pregnant again I would have every test going because I didn't want another child with health problems, having already had to deal with one.

There are some people who have children who inherit life limiting conditions, and some who go on to have several children with inherited problems. This is something I cannot fathom, but it isn't for me to judge.

ILoveDHIDo Thu 06-Feb-14 23:08:55

I'm with AnnieLob. I had the test at 12 weeks to check for any abnormalities and I said that should they find any, I'd like a termination.

I know myself enough to say that I would hate to be a carer and if I gave birth to a child with problems, chances are I'd give them up. They'd deserve better and I know on myself I do not have the emotional strength to be a carer.

I expect to be flamed but that's the truth

FannyFifer Thu 06-Feb-14 23:28:43

I declined any of the tests during pregnancy, midwives were horrified, I don't know anyone else who declined.

In my case there was no point as I wouldn't have terminated a much wanted pregnancy due to Down Syndrome.

Join the discussion

Join the discussion

Registering is free, easy, and means you can join in the discussion, get discounts, win prizes and lots more.

Register now