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Ethical dilemmas

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Original poster

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

385 replies

LesAnimaux · 10/04/2011 20:59

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.

OP posts:
goingdownhill · 12/04/2011 19:24

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

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

sungirltan · 12/04/2011 19:28

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

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

devientenigma · 12/04/2011 19:30

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

mrsravelstein · 12/04/2011 19:32

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

devientenigma · 12/04/2011 19:33

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

devientenigma · 12/04/2011 19:35

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

goingdownhill · 12/04/2011 19:35

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

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

Bumpsadaisie · 12/04/2011 19:36

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

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

devientenigma · 12/04/2011 19:38

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

devientenigma · 12/04/2011 19:40

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

BlueCat83 · 12/04/2011 19:45

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

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

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

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

goingdownhill · 12/04/2011 19:46

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

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

devientenigma · 12/04/2011 19:58

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

sungirltan · 12/04/2011 20:04

bluecat83 - what an awful experience.i am so sorry

totally agree with your second paragraph though - spot on

goingdownhill · 12/04/2011 20:05

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

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

SpeedyGonzalez · 12/04/2011 20:19

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

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

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

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

thefirstMrsDeVere · 12/04/2011 20:30

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

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

devientenigma · 12/04/2011 20:32

yeah, thefirst, is that an offer??

devientenigma · 12/04/2011 20:34

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

Northernlurker · 12/04/2011 20:41

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

manitz · 12/04/2011 20:46

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

G1nger · 12/04/2011 21:01

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

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

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

I make no apologies for any of this.

SpeedyGonzalez · 12/04/2011 21:04

Devient, that depends on the parent.

MrsGrotBag · 12/04/2011 21:20

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

devientenigma · 12/04/2011 21:20

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

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

Goingdownhill, meant to say thanks earlier also.