termination for cleft palate

[Jimjams]

looks as if that story may have been true:

www.timesonline.co.uk/article/0,,2092-904495,00.html

The title of the article says it all really....

What I object to isn't that abortions are offered, it's the fact that they are offered a little to easily without the correct support for the alternative. EG when a parent finds they are carrying a child with DS and termination is offered the person offering should also make sure the parents have all the facts, good and bad, about what it could mean to have a child with DS. Perhaps even be offered a number for a mother who lives locally so they can have the chance, if they so wish, to talk it over with a parent who has been through where they are now and can make an informed decision. I am not anti abortion I'm pro choice and pro all facts being offered to parents. I think that when you are vulnerable and scared when an abnormality shows up in a scan that someone saying - here - take this get out card - you don't have to do this and perhaps some parents think well it wouldn't be being offered to me if things weren't bad, if they think we shouldn't go through with this pregnancy maybe we shouldn't. Do you know what I'm saying? I don't think I'm articulating myself very well and nor do I have tons of evidence this is happening just a few things I've heard first & second hand along the way.

TC _ I do know what you are saying. I believe that many people simply do not believe that a disabled child is "as good as" a "normal" child. I have come across several people who seem to think that ds2 is more important than ds1- and that I would feel that way as well. I tend to think that people believe that they would not love a disabled child as much as a "normal" one (and that is why that comment in the autism article about the child being unloveable got through the editor without even being questioned). I also think that often when people choose to terminate its becuase they expected a normal child, and what they've been given wasn't part of their plan and therefore isn't quite real. They're not terminating a baby- they're terminating a mistake. And yes they've been given a get out clause.

However I'm not sure they'll ever get a particularly different view from drs etc, as without a very good support network it's pretty hard to work full time and career progress etc if you have a disabled child. Not saying its impossible (I know you work for example TC) but I know more people who have had to give up work than manage to combine the 2.

Having said that its very hard- as you are always going to be making a decision in the dark. For so many conditions that can be picked up antentally- the degree to which someone will be affected is often impossible to tell until after birth (thinking of things like DS, and spina bifida). Unfortunately Dr's etc seem to think its in their remit to only give the worst case scenario (for example for spina bifida- never walk never be toilet trained etc- when the only person I've known with spina bifida was fine except had to wear a special shoe and walked with a slight limp- obviously she represented one end of a broad spectrum).

Thanks JimJams - you said it so much better.

I actaully went to my 2 local hospitals and gave them my details so that any parent faced with a desicsion on whether or not to terminate becasue of DS can call me to ask questions and if they wanted and asked they could meet Lottie.

As you say the worse case scenario is always presented which is so sad. Lottie is a great example of the alternative outcome. As we've all said many times before there are no guarantees in life and I feel very strongly that all possible outcomes are presented to the parents so a full informed decision can be made by THEM.

I just look at my perfect, amazing child and it sickens and scares me that doctors thought it would have been okay for here to not be here!

I'll be following the cleft palate case with interest.

That was a good idea to give your details. Meeting this person at school with spina bifida really totally changed my perception. Until then I'd thought that the worse case scenario was the only scenario. It was only after meeting her that I realised it was far more complicated. By the time I was pregnant with ds1 I knew that I would only terminate for conditions incompatible with life (eg anencephally). Everything else was too what if.

Probably a good job I'd reached that conclusion considering what happened

I'm not sure this is related but what I really hate is people who say "oh I'd love another child, but only if its a girl, I really don't want another boy". ????? eh?????? Want to choose their future career and sexual orientation whilst you're at it. Is it part of the same thing or something different? (just pondering I'm not sure) - is it about expecting to be able to choose every apsect of our lives, and for everything to be our "right". (The people who say these things also tend to have decided down to the month what age gap they'd like- I always feel like grabbing them and saying "but you could have fertility problems?"- and as for the girl thing I always feel like saying "would you prefer a normal boy or a disabled girl"

I think it is a little different as having a disbabled child has the potential to affect so many aspects of family life whereas wanting to choose the sex is cosumerism gone mad.

I've since thought of loads of differences- maybe the whole girl thing is just a case of wrong audience iyswim. I don't know- it always leaves me feeling uncomfortable.

I suppose it is all down to personal choice. You cannot make someone do something they dont want to. It is like your example of something jimjams you would abort for, that would most probably upset someone who has got a child with condition who has decided not to abort. It is very complex. I would like to know the full story really, I dont think all the evidence has been presented yet, has it? - or am I talking out my bum again!

I hate boy/girl thing too. I went to a party once and a couple there who had 1 daughter was saying if she had another girl she would be absolutely devastated because all she wanted was a son. And to go through a whole pregnancy just to be given another girl would be a waste of time (!) - she was being serious!

I think it is lovely that you have done that Thomcat

Of course the mothers decision should be respected, absolutley, no doubt about it.
As long as that mother was allowed to make an informed decision and wasn't given the worst case scenario only. As long as the mother was told look it can be this bad at the worst end of the spectrum, but it could also mean / be like this....

It's not the mothers decision that I think people have the problem with but with some of the medical professionals out there.

dinosaur - who would be babes, who would be
Love to you.

Yes I agree ThomCat- If someone was told "your baby has spina bifida- they will never walk/be toilet trained/be able to live an independent life" then I think many people would choose to terminate- as they would think they wouldn't be able to cope (I suspect they would be wrong- and they would- but still). If however someone was told "your baby has spina bifida they will walk with a slight limp" then I'm guessing they wouldn't. Of course the reality is no-one knows where within the extremes a particular child will fall- but parents should be told about both possibilities not just told the worst possible scenario.

And dinosaur- I couldn't imagine carrying a trisomy 18 baby to term- it would be heartbreaking. It is for cases like that that late termination needs to be allowed. I don't think anyone would dispute the severity of trisomy 18. But if it is true (and of course it may not be) that someone was allowed a late termination for a straighforward (if that's what it was) cleft palate- then questions do need to be asked.

Fio2- was your party boy wisher aware that you had a SN child? I really wonder what people are on when they go on like that to me. I usually make a remark these days. HOnestly talk about not knowing how lucky you are.

oh quite dinosaur. I couldn't do it I know that awful.

KS: yes, Cleft palate - and the details of Dino's and my DS's feet- can be an indicator for a range of Trisomies (?) which are no viable, but most are simply congenital abnormalities (eugh hate that word, but it's the official title) in isolation.

When DS's foot was spotted on the scan, we were offered amnio to check for the whole range of chromosomal conditions, and I think that King's actually made a careful distinction between DS and the non-viable trisomies, and were most careful to avoid advocating amnio to us, or that we would re-act negatively to DS. We did have amnio - but I'm not sure why, in retrospect, as the chances of miscarriage as a result, tho slight, was still much higher than the risk of the non-viable trisomies.

jimjams I dont think she did know and I am not the kind of person to say things either, I leave that to dh - he takes no prisoners! I thought it was inappropriate anyway because the party host had just given birth to her 2nd daughter anyway, some people!

jimjams, this really isn't the thread to get into this debate but I am one of these evil people who was desperate to have a child of a particular sex. In my case because I felt my whole childhood had been blighted by my mother's obvious favouritsm of my brother, & HER mother's obvious favouritism of HER brother. I wanted to break the pattern. It didn't work, & I had a girl followed by a boy, the EXACT family I didn't want.

OK in the light of the problems a lot of you had/have, it may seem no big deal, but emotional problems are as real as physical ones & the feeling of no self-worth you develop as a child who doesn't feel loved does tons of damage, which carry on into adult life, and into the next generation, as my mother has wonderfully demonstrated.

I didn't want my DD to feel like I felt & I thought that by breaking the pattern & having just girls I could somehow make it right. When DS was born I knew we HAD to have another child to break the pattern that way. We ended up with 3 DS's. TBH I am not a great child-lover, & neither am I a loving Earth Mother type. I really couldn't cope with 4 little children. We've all suffered for my stupidity- I should have had counselling before I had them & didn't realise at the time.

What this waffle is trying to say is that you can't always tell what someone else's motives/feelings are. I've realised since joining mumsnet that actually most people don't feel like I do about most things. Other people may seem shallow & stupid but you don't know what drives them. We all carry baggage. (please don't all jump down my throat at once)

Tallulah- I certainly don't think that people are "evil" for wanting a particular gender. If I had another child I would probably prefer a girl- just because I have 2 boys already - and of course the higher risk of autism will be slightly less in a girl (although would be perfectly happy with a boy). My problem really is with people's insensitivity if they carry on about wanting a particular gender of child - and what a disaster it would be if they didn't get that- to me when I have a child who will probably never live independently. That's what I meant in the added bit about "wrong audience"- I realised that actually they are just verbalising something that doesn't really matter but just saying it to the wqrong person. In the same way that I wouldn't moan about my situation to someone who had lost a child. There's always someone worse off.

There was a local woman in the paper who went abroad to have IVF to have a girl- and reading articles about her did make me feel slightly sick, but I have sen her criticised in the press by many other people recently- for the same sort of reasons- but that was a very particular case.

Anyway sorry if I offended you - had a prety big day today and don't really want to get into a fight.

My SIL started a conversation with me about this whole girl thing last time I saw her- which is probably why I was thinking about it iyswim. Anyway her friend has been ringing her a lot recently saying exactly this (friend currently has boy and girl, wants a 3rd- but has to be a girl because they have nicer clothes apparently). Anyway my SIL can hardly bear to hear any of this- she is about to start fertility treatment for unexplained infertility. Again just the wrong audience. THing is SIL felt she was being a bad friend for feeling the way she did about these conversations- whereas I thik her friend is an insensitive cow! Obviously one particular situation and bears no relation to other situations but maybe a better explanation of what I meant.

jimjams, you didn't offend me as such, and I certainly don't want a fight! I just wanted to get across that sometimes there is a reason for someone saying something that someone else finds offensive (oh dear, that's a bit garbled.) I can see why you might have said it, in the light of your SILs friend Hmmm.

Unfortunately my middle 2 boys have ASD, and of course as you say there would have been less risk had they been girls, which just adds to the mix. On the one hand there are people far far worse off than me. On the other there are familes with 4 perfect children & it is hard sometimes for those of us with a less than saintly nature not to feel that "it's not fair" mantra running through our heads.

dinosaur, thank you for your kind comments. Much appreciated. Yes I have had tons of counselling (better late than never) & have looked at this in great depth. It helps. Plus DD is 17 & the only sibling she resents is DS2, who she loathes with a passion. She is best buddies with both DS1 and DS3 & doesn't seem to have suffered the same fate- thank god. (But of course DS2 resents DS3, wouldn't you know it, so you can't win. )

I do know what you mean tallulah- and really I was only moaning about people like my SIL's friend- but of course my post lumped in everyone together.

TBH the other siutation that has been in my mind recently was the person in the paper. She seemed to be creating thr family that you wanted to avoid only in reverse. She's been in some national papers recently as well. Basically she had 4 boys and really wanted a girl her reasoning being that boys just go off and leave you whilst girls are your friend for life (bit of pressure on the future girl here I think). Anyway she paid five grand and went abroad to have sex selection IVF. She was in the paper quoted as saying things like "I've told the boys that they'll be having a sister and she'll be here before xmas and they're all really excited" This was BEFORE the IVF. She seemed to think that she could just pay her 5 grand and then hey presto she'd be handed a girl on a plate. It didn't even seem to have occurred to her that it might not work. Anyway brief bit appeared in the paper a few weeks later saying that the IVF hadn't worked. Followed by a piece about the heartbreak of it not working, Then a few months later another piece saying that another 5 grand later, another trip abroad and she was pregnant with a girl.

There were so many things that disturbed me about this case- what about the boys knowing that they were 2nd best (that's how the articles read even if that wasn't how she felt). What about the pressure on the girl to be whatever girl it was she had decided she wanted? And finally what about this woman who seemed to think it was her "right" to pay her cash and then conjure up whatever family it was that she wanted.

Obviously an extreme case, but it was those things that my original post was based on.

Tallulah- I do think favouritism is so destructive. It severely affected one of my dad's sisters (one of his other sisters was the favourite). I ws worried abou having a favourite before ds2 came along, but was pleased to find out I don't.

I don't know about families with 4 perfect children. All the one's I know have 4 very young children so their mother's are more stressed than me I don't envy them I don't really do the "it's not fair" bit- mainly becuase everyone has their own problems- you know the thing perfect children but crap marriage or whatever- swings and roundabouts- I just feel sad for ds1 and for what autism has taken away from him.

What a lovely comforting thought, maryz. Thanks