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

[LesAnimaux]

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.

[StealthyKissBeartrayal]

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]

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]

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]

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]

'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.

[LesAnimaux]

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]

sungirltan, I mean, sorry.

[Changebagsandgladrags]

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]

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]

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

[Aliz07]

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]

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]

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]

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]

Aliz :( for your family members.

[SanctiMoanyArse]

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

[sungirltan]

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]

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

[naturalbaby]

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.

[devientenigma]

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]

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.

[devientenigma]

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]

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.