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

[JaneFonda]

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.

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.

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!

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

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

Have a hug

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

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

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' ...

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.

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.

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

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

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

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

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.

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.

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.

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.

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

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.