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.

I wasn?t going to post on this thread, as I feel it can be hurtful to all involved, however I just can?t let it go. I terminated in 2008 following a diagnosis of DS. There aren?t enough words to describe the thought process that led to my decision, though my main reason was, as a lot of people have said, fear: fear of the unknown, and fear of worst case scenario. I know no baby comes with a guarantee they will be healthy, something could happen at/after birth etc etc, but the risks with DS are increased. No one could tell me (of course) how severely my child would have been affected. The medical profession were very negative, I found.

I wouldn?t say ignorance was so much a factor, as once I knew the diagnosis, I read as much as I possibly could on the subject, spoke to the DS Assoc etc, and I think a lot of people do this when faced with the diagnosis.

It took me five weeks from diagnosis to make the decision. I went back and forth during this time. That?s not saying that I considered it more than people who took less time, or who know their decision beforehand, just that I had not given much thought to DS before diagnosis, whereas other people may have. Even though I knew the scan was for DS (amongst other things) I was getting the scan for the chance to see my baby, and for a picture for the album. Incredibly arrogant and naïve of me, I know. When asked what I would do if it my baby had DS by a friend, I was offended by the question ? I?d have it of course.

I can understand parents of children with DS may feel offended by the decision I made, and for that I am truly sorry, as in no way do I look at people with DS and think they are inferior/shouldn?t be here etc. A sighting of a person with DS has more often than not, led to a wistful discussion between myself and DH as to what might have been if we had faith that everything would be ok. I?ve said it before elsewhere, but I?m sure if I hadn?t had the test and my baby had been born with DS, we would have coped, my worst fears would probably never have been realised, and I would be thanking God every day that he was a part of our family, though of course there still would have been concerns for the future. However, I?d had the test, I did know, and I made a decision based on the limited information available at the time (I say 'Í?as DH was totally at a loss and had left the decision up to me). Having said that, I can?t regret my decision, as if I had not chosen what I did, my DD would not be here now.

I?m not writing this to justify my decision, as I don?t quite feel the need to do that. I just wanted to answer the OP?s question by sharing a fraction of the thought process involved from someone who had been there. Although I don?t claim to speak for everyone who has terminated a pregnancy following a diagnosis of DS, its not usually, if ever, a decision that is taken lightly. I?d also say it?s a pretty safe bet that very few, if any, terminate due to the baby not being ?perfect?. To suggest as much is just so far off the mark, it is not even offensive IMO ? just an absolutely ridiculous and telling comment.

PS Ive read that Kelle Hampton blog before ? it?s lovely. My dd shares a birthday and 'almost? a name with hers

I can tell you without a doubt if I had a baby with this diagnosis I would terminate that pregnancy immediately. If that makes me a bad person then so be it.

This is not a judgement on anyone with DS but I have four children - two out of those four have serious illnesses and special needs and I am an older parent and would not wish to leave that level of responsibility to that child's siblings.

It would be a simple decision for me - heartbreaking but simple.

good post ashamedandconfused.

"There are lots of things that can upset us as individuals, that doesn't mean other people can't talk about them" of course. However there are several things I haven't said on this thread because I know they may upset people. Sometimes self-censorship is important.

Had I terminated for DS, or another medical reason, it would have been because of the effect it could have had on my life as well as the issues it would bring once I die. You have to consider how the child will be cared for once you die as well as how their birth will effect your life.

When a child (or adult) is injured or damaged later in life (or birth) it is different, imo. With testing you can plan and consider your options, with later damage you just cope with it as it happens; with testing (amnio etc) you can know for sure.

If I had been faced with a decision like this when carrying ds, it would have been informed by my own experience and that of my family. I grew up knowing many people with physical and learning disabilities of various kinds, so (I hope) I have never been prejudiced - at least, as far as I am able to judge myself. My sister is an LD nurse who has often had to fight prejudice on behalf of her patients, even amongst other health and social care professionals, let alone the general public.

I did have more ante-natal testing than most people because I have a long-term health condition. I was not able to work out in advance what I'd do - all I could handle at the time was having the test and deciding that I'd think about the results when they came. Fortunately the results were all reassuring so I never had to confront what must be one of the hardest decisions anyone ever faces. (Although of course I was aware that no test gives you a 100% guarantee and that there are plenty of conditions that aren't tested for, let alone birth injury).

But as a young woman I saw my Gran worried sick about what would happen to her brother when she died, and the relief mixed with deep sadness when he died before her. She was as heartbroken as anyone else would be at losing her 'little' brother but also free of the fear that he'd be left with no-one to fight his corner. Even though my sister and I would have done our best, we didn't live near him and with the best will in the world we could never have replaced our Gran in his life. (And moving to be near us would have been deeply distressing for him.)

It's the long-term issues that would worry me, desperately. Although, not having been in that situation for real, I have no idea how I'd feel and whether I'd continue even knowing all that.

Of course, but you can't not talk about them at all. I think people on this thread have been very sensitive, but its shouldn't be a banned topic for discussion.

I don't think that people can judge others. I would imagine that most people's fear isn't the baby and small DC- it is what happens if you die before the DC. I have a friend with a mentally handicapped DS, he is now in his 20's and I know that his younger sister is very worried that he will become her responsibility in later years. She is very caring and her parents have no idea that she is so worried-she hides it from them.

it does seem unfair that siblings are left with the burden.

I would imagine that most people are thinking the long term issues and not the baby, childhood ones. It is how do you cope with a 40 yr old when you are 80ish yourself-even if they are well looked after in a home it is a huge responsibility.

Personally, I would have thought that since a MNer is just going through a heart-rending decision making process and probable termination that you could have waited a few days before starting this thread to satisfy your curiosity OP.

of course there are some people who find it difficult to cope with a child with severe disabilities. But reality is that you can never really know until you are coping with your child with severe disabilities, because seeing someone else's unrelated child and their difficulties isn't the same - it just isn't. For one you don't have that parental bond to someone else's child - there's even an element of that in the way people relate to their own NT children vs other peoples' children, so disability does not change that parental bond.

But the thing is, there are far more disabilities that cannot be tested for than can. So what do you do if you end up with a baby born with cerebral palsy, or one with regressive autism if you are so sure you cannot cope? Do you give the baby up for adoption at the point you feel you have reached your coping point? If your once healthy baby develops a serious illness and becomes disabled as a result, do you then give it up because you can no longer cope with it? Plenty of people felt strongly about Julia Hollander who abandoned her baby at the hospital when she was just four months old because her "d" h gave her an ultimatum "it's her or me" while they drove her belongings to the dump and left her to be cared for by a foster parent.

Downs is just one in a vast range of disabilities, most of which cannot be tested for.

I am deeply uncomfortable with the idea of people that terminate multiple pregnancies because of often genetic conditions. I can absolutely see why someone might not want to have a child with Muscular distrophy, for instance, and can totally see why someone would go down the route of pre-implantation diagnosis in order to not have a baby with certain conditions (I believe MD and Cystic fibrosis can now be tested for, and there are probably others by now). I can even see why someone would terminate one pregnancy due to any other testable condition (I personally wouldn't, but obviously people do). But I think that it is wrong to terminate several pregnancies in succession, often late on, just to ensure that you get a perfect child. If the chances of passing on a certain condition are that high, it would surely be better to either not have children or use donor sperm/eggs or a surrogate than to keep going through late termination after late termination just on the off-chance you get a "perfect" child one day. I can't believe that people need to have a biological child so badly that they're prepared to abort several babies just to get the one they want.

Wannabe - I imagine that the number of people who have multiple terminations for disability is extremely small indeed.

purenewwool people go through these things all the time though. It's not wrong to ask the question just because someone out there is currently struggling with the answer - it's a valid discussion.

The thread title is clear enough - people who don't want to discuss it do have the option to hide it.

I'm sure it is edam, although there are several people on mn who have terminated more than one pregnancy because of ds (had encountered threads before I hid the ante-natal topic).

I think you will find very few people who would actively blame someone who terminated outside fairly rigid faith structures 9there's always some of course)

Equating blame / anger with the offence felt by the mother of a child newly diagnosed with a chromosomal disorder is a little unfair. When we read these things it can be hard not to see someone saying our children aren't wanted, and we all have the same mummy-protect instincts, Sn child or not.

Personally I feel that staying out of these debates is a mistake becuase they need input from people on the coalface (and as I had my carers assessment this very afternoon I am indeed at that coalface....) and indeed from people who ahve amde the decision; it humanises things. My own mum ahd a termination for disabiltiy- incompatible with life she was told though pre-scans so how they knew for sure I will never know (rubella)- and I know a very little of how hard that was for her, esp. as she had lost several babies to stillbirth previously.

But i think we must accept and crucially understand those who find these discussion difficult. On this occasion it has gone so well, on otehrs on Mn things have gone less so.

I would never lie about what it is to be a carer; for me anyway, some people find it an amazing thing. For me it's meant poverty, loss of a career (ironically withs truggling famillies.....), exhaustion, and at times my marriage ahs struggled to survive. DH ahs severe MH issues himself which I suspect are related to tiredness and the strains.

OTOH love answers for a lot; whilst i would wish my chidlren to be devoid of any difficuloty, I woudl never choose not to have had them. We don't have much of a family network (MIL hasn't been spoken to since she called ds1 a freak and mine are far away), but on balance i'd rather have this than not have had kids altogether.

And oh yes the other thing that does worry me is that when people have these tests so often they really do think that an all clear = a percect child: like hell does it. Fifty percent of the kids supported by the local social services now (according to SW today) ahve autism, a non testable condition. When you look at the stats DS is such a small risk comapred to the rest of it, that it is far from an all clear yet I never managed to get that across to my sister and I knwo she is not unusual as I have seen it on here.

The huge, undeniable difference between many disabilities and DS is that it's now a choice. You know what's coming - unless you refuse all testing - and therefore you are actively choosing to have a child with a disability. Some people can't do that.

Very true.

It's just that nobody can choose not to have a child with a disability and I fear some people have a false sense of security, and that should be explained better.

I have avoided this thread, as tbh it is same old same old, and I can't understand why it isn't in the antenatal testing topic, BUT I just have to say I hate the word "choice" when it is used about having a child with a disability,
you can test for ds, you could then terminate, or get the all clear and STILL have a severely disabled child, with a much worse disability, but one that is untestable. what do you do then,
alos the idea that a sibling is going to be the carer, that imo an excuse for a parents decision.

SanctiMoanyArse x posted with you, I agree with you

It's true you can't choose not to, but if all the testing comes back positive you're in the position of choosing to purely by not choosing not to, and then it is a choice. But an all clear for the chromosomal abnormalities which are part of routine ante-natal testing is indeed not guarantee of a healthy baby/child/teen/adult.

However even if you're going to continue with the pregnancy it's probably better to know on balance, because then you and the medical team are prepared.

We are missing a point here..............my personal case was that they were looking out for down syndrome. Blood test was low risk, so no cvs or amnio needed, all scans were fine etc............ds was born, down syndrome, heart condition etc............no choice here.

Absolutely Devient (that sounds so wrong doesn't it LOL Peachy asociates with all kinds of devient...)

And indeed with ds3 who got the HR DS result, didn;t have it (so would have had an all clear for amnio) then had something else that quite amusingly makes him rather like another child I know who has DS............

There's no rights and wrongs and but there are also zero absolutes either.

FWIW I know a few chidlren born with a disability and abandoned, one in hospital as Dad didn;t want 'one of tehm downs kids' (my Aunt, childless through no choice and Mums' best friend, never spoke to her again)- well the ones I know have the most amazing foster aprents who adore them and great lives. We'd be better looking at social care and how it functions, esp. after carers have passed on , perhaps then people woudln;t feel so challenged by SN?