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.

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

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

I thought the same as EllAEllO. :)

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

My BIL grew up with a brother with DS. He is adamant that if a child of his is shown to have DS he wants a termination. His brother is in his 30s and in a care home.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Yes, this thread is awful on all levels.

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

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

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

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

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

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

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

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

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