DH would abort but I wouldn't........help!

[Bloo]

My DH really took me by surprise - he was asking at what stage we take all the tests for DS etc etc. I said that we should only have them if we would potentially act on the results as they come with some risk. to cut a long story short, DH said he would want to abort if the baby had DS. I am mortified. Has anyone else been in this situation>

My third child has special needs, actually she has a genetic condition called Sotos. There is no pre-natal test to test for this. It was only diagnosed when she was nearly 3. If a test had been available (and if I had known she had this condition) it would not have changed my view on continuing the pregnancy or having baby. Sotos is basically an overgrowth condition (but I imagine my DD to grow up being tall, leggy and blonde - wish I was!!!) with delayed development. She goes to mainstream nursery, does ballet lessons, does swimming lessons - everything my other 2 children did when they were the same age.

She is on the disability register and I get disability living allowance for her but I would not change her for the world.

I am now a single mum (we split after my third was born) but this was not due to the baby (no problems detected at the age of 11 weeks which is how old she was when me and my ex-h split) but I still work, I still have a very active social life (when she is with her dad). She has not hindered my life in any way, actually she has enhanced it, because as others have said, it has made me and her siblings more acceptable of anything that is slightly "different".

She goes to friends houses for tea, plays with other children, interacts. She has special needs in that she is "slightly delayed" (but always catching up) but I would not change her for the world.

She has kept me sane when I went through a very bad patch (husband separated but still living in the same house) - but then being busy with any new born baby would have kept me busy. She is adorable, loving, sociable and I would change her for the world.

We would all like to live in a "perfect" world but what is "perfect".

Bloo - sorry to have hijacked the thread - just hope you get your different views sorted.

Thanks thebeckster and eidsvold - very good insightful info and tremendously helpful. I hadn't even thought about the possible need for in utero treatments etc xxx

Sorry, I had to dash off earlier. You have been great and aside from all the affirming stories that highlight the abominable strength of human love, I have picked up some really helpful facts, so thank you very much. xxx

hope you get a chance to talk things throu with hubby and come to some kind of agreement, it must be tough i think there have been some thought provoking posts on here,hope some of it has been helpful to you.

I am new to Mumsnet and just read this thread in its entirety.

I too, found Trifles comments jaw-dropping to say the least, but some of the responses and other comments actually made me well up.

I don't have a SN baby or any experience to speak of to do with SN children/adults/parent and am completely naive in that respect. I really hope this doesn't sound stupid or cliché’s, but some of the posts have been a real education and changed my otherwise limited perception of life with a SN child, in a very positive way.

Bloo, my DH was in the room as I read this post. He used to have a similar view as your DH. He didn't understand what 'aborting' in this scenario would mean and had he, I think his view would have been different. Tonight he said that having a baby has totally changed this view anyway.

thanks for starting this thread bloo - dh and I had the same conversation but I had an early m/c so the dilemma ended there.

Don't know what will happen in the future but have found this thread useful.

Thanks.

Where do your rights as a pregnant woman end, where do the rights of the unborn child begin, where do the rights of the father come in, when does society have a right or duty to intervene, offer treatment, deny treatment or suggest treatment? What is the point of taking prenatal tests if you have no intention of acting on the results? Do we all wish our children were different, had different talents, strengths, faced the least number of problems possible?

Yes, I think Trifle was asking the above, playing devil's advocate and this was posted in pregnancy - posing the dilemma: what if ..... Pushing the debate to the limits is logical, maybe even constructive if it makes you think. If you take prenatal tests, doesn't it imply that you are prepared to act on bad news, otherwise why take them? But given that most people don't actually know what they will do until they are in that position, this is a hypothetical situation unless you have experienced it. Nevertheless, your reaction does not negate someone else having a totally different one. What is "right" depends mostly on the person making that decision, but also on the society and culture they live in.

Only Trifle will actually know for sure if the posts were intended to offend, but when I read them, I saw someone asking hard questions, ones designed to make another person think and look at themselves.

Given the strength of feeling around these subjects, this is the right forum for this discussion because, in RL, it is one many people would not want to broach.

Kiss, I completely disagree. Trifle clearly has a very prejudiced view of anyone who has a disability - in particular, it seems, people who have DS. If she was well informed on the subject and knew what she was talking about then she would realise that, as with all things in life there is no black and white. Trifle has made many generalisations about typical people versus people with a disability - and in reality that's not how it is.

I know several people with down syndrome and they all went to mainstream school, have friends and lead active and interesting lives. I would not hesitate to keep a baby with downs syndrome although i know that there would be challenges along the way. Bloo, i think if your DH learned a bit ore about it he might see things differently - it is fear of the unknown i think.

i think you are right schneebly - it is fear of the unknown... a lot of people say they would terminate if a child had special needs... in cases of Down syndrome - people who know families who have a member with down syndrome or know someone who has down syndrome - they are something like over 60% more likely to continue in the pregnancy than someone who did not.

I am sorry KISS but trifle was not asking hard questions - she was making sweeping statements and moral judgements of others.... making comments about lives that she seems to know nothing about, just regurgitating ignorant statements and reinforcing ignorant stereotypes.

Can't honestly see where telling me I am blinkered about my daughter's future and am sweeping the issue of how difficult it would be to raise a child with sn under the carpet would be classified as a hard question....

sorry but hard questions - PARP!

She wasn't asking hard questions she said "If people want to sweep the effects of having a special needs child under the carpet then more fool them."

She also said:
"The harsh reality is it is not easy and life will be affected forever but some people are so blinkered they dont look at the long term prospects. "

Those aren't hard questions they're ignorant statements, from someone who apparently has absolutely no experience with disability. Although she knows someone whose brother is disabled. Well boogaloo.

She also said: "For me the reality is that if you choose to have a child with DS can you really look at your friends NT children and not wish that you had one like that" which is unbleievably offensive as it suggests that disabled children are somewhat lacking, and that NT children are better. And that if our children were NT then we'd love them just a little bit more (bollocks).

I've been looking, but cannot find the message that ghosty posted about a mother at the funeral of her severely disabled boy. She said what I am trying to say beautifully. I'm going to email ghosty now to get her to repeat the story.

Bloo, I am 7 weeks pg with baby number 2. I am 41, ds is 57. Before we got pg with ds, we had a very frank discussion about the possibility of genetic problems. We came to an agreement that we would do amnio and would terminate if abnormalities showed up. It is not a popular thing to say, but dh felt that at his age he was not best able to care for a disabled child. I felt that I had to honor his feelings and, tbh, I'm not sure how well I would cope with the situation either, although I guess it's something you can't know until you are faced with it. Of course, the problem with amnio is that is is not done until 16 weeks and you already have started to really, really bond with the baby. I was terrified that we would get bad news and thank the Goddess that everything turned out OK. Now, with this baby, I have to face all of that again and I am just trying not to think about it.
As far as medical advice goes, you are advised to have testing when your chances of having a baby with a genetic defect are greater than the risk of miscarriage. For example, if age equivalent risk of ds is 1 in 110 and amnio risk of miscarriage is 1 in 190 then amnio would be advised. Of course, with an experienced practitioner the risk of miscarriage with amnio can go down to as little as 1 in 1000.

I truly hope that I have not offended anyone. I just wanted to share our situation with bloo.

OK, I normally keep off threads like this as it can be such a difficult subject to talk about but Jimjams emailed me and asked me to relay the story of the lady with the severely disabled son.

I don't know this lady personally but a good friend of mine does and he went to the funeral of this lady's little boy. Of course this does come second hand to me but my friend had only just been to the funeral and told me this story and it has stuck in my mind ever since.

Apparently the little boy had been born with a tragic chromosomal disorder which meant that he would never sit up, crawl, walk talk or even feed himself nor indeed eat. Children with this condition rarely survive the first few weeks of life and almost never reach their first birthday.
Anyway, the little boy died the day after his 3rd birthday, having defied all odds to stay alive that long
At the funeral, the mother stood up to speak to everyone who came. She told them that she knew what they were all thinking. That this must be a blessed relief to her after all she had been through in the last 3 years. That now she could get on with her life and move on.

She then said they were wrong in thinking this and she would give everything she owned to have just one more day with the little boy who she loved more than anything in the world and that her world was now, and would always be, empty without him.

I seriously don't know what I would do in this situation. I am glad I have never had to even think of making a decision like this -

All I know is that I have a friend who only discovered when her little girl was 5 that she had a rare chromosomal condition called "P minus 18" - so rare that she is yet to find anyone in NZ with the same condition. By some miracle her DD has escaped the severe physical disabilities that usually go with this condition and it was only discovered through genetic investigation after they worked out she had major learning disabilities.
After much emotional turmoil and grieving for the future her little girl would never have my friend told me that one of the most awful realisations she had had was that 5 years previously, if she had had an amnio test with the pregnancy, she knows she would have terminated - and now looking at her daughter she is horrified that if she had terminated she wouldn't have her and she just couldn't imagine her DD NOT being in her life.
I really hope that bit reads right - that 5 years ago she would have terminated but now that is just unimaginable ....

Thanks ghosty- that mother's message was very powerful. I have noticed a lot of people (including professionals who should know better) are often of the impression that a severely disabled child will somehow matter less to you than their normally developing siblings, or indeed the speakers own child (really weird that one, but the only explanation for the sheer insensitivity of some people). I think the funeral speech lays that misapprehension to rest very powerfully.

Interestingly - when we found out dd2 was on her way - everyone assumed as I already had a child with down syndrome, I would be having all the tests under the sun. I had a GP who wanted to send me for fetal cardiac tests, a midwife ( new one as we had moved) who was horrified I was not having the triple test, a sonographer who was shocked we were not having a nuchal fold scan so she went and had a look anyway at the 12/13 week scan.... and so on. I didn't even when dd2's 20 week scan showed soft markers for Down syndrome.

We also had friends who were horrified we even considered having another child after dd1... cause you know?!?! Well the you know turned out to be - what if you have another one like dd1!! I figured at least I would know what I was doing. We also had others who figured we had no2 to make up for no1 - so we got our NT child in the end....

Finally we had our true friends who rejoiced with us and knew that we wanted children - not just one, not just the perfect image but our babies to love and cherish come what may.

Your story reminds me Ghosty of the number of medical professionals who asked on meeting dd1 did we know before she was born that she would have down sydnrome and heart defect... I finally got one to admit the reason why - at least if I did not know then i could be pitied or exalted as this brave woman who had taken on this child with sn. If I knew beforehand - well obviously some right to life nut or some strange deluded woman with a martyr complex. Of course my daughter is such a burden ( NOT!)Of course I am neither of these - jsut me - a mum to two gorgeous girls.

Sadly just prior to leaving the UK we learnt that the year dd1 was born - a significant no of babies with down syndrome were aborted than were born - how sad.

Ah something similar here eidsvold. I know someone with 2 disabled childre,pregnant with a 3rd.... And the mutterings. As if you're not allowed to have children if some are disabled.

I remember everyone trying to overtake your pregnancy annoying you, and I can understand why.... I do think it sad that termination for DS is often seen as the only option, and any other is as you describe- pro-life nut or martyr. I know I've told you before, but had a friend in the same situation who had a terrible time explaining that she did want to continue with the pregnancy.

this reminds me of going for a scan when I was pregnant for the third time (dd2 was my second baby) - the radiographer apologised for dd2's heart defect and possible other markers for DS not having been picked up at her scan because 'then I could have done something about it'. Uuuuhm thanks - shall I bring her in and you'll strangle her for me now?

geekgirl. That's appaling.