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....

Please don't think I am supporting this termination because I'm not, but only on the facts given...but there was something in the BBC article that made me wonder what the woman's cicumstances exactly are:

"The degree of disability varies widely from case to case. Sometimes the cleft can go all the way up the face, sometimes there is far less malformation when the child is born...Ann Furedi, from the British Pregnancy Advisory Service, said she had been told that the severity of cleft palate varied widely, and in some cases the deformity could be life-threatening."

Is this true, could a cleft palate be so serious that a baby could die. Forgive me for my ignorance, I really have never heard of it being so serious. My mother has a very slight cleft palate, that was easily repaired so I never envisaged anything more than that.

Well after a quick search on Google I can't find anything on a fatal cleft palate...so what are they on about on the BBC?

chromosome disorders relating to cleft palate I would have thought pie I have put further down in the thread there was a lovely litte girl at my dd's school who had trisomy 18 who a cleft lip and palate, she sadly died at 2 (nearly 3) which I think is a longer life expectancy than usual

I read that fio, so sad

I just thought from the wording on the BBC article that the defomity in itself can be bad enough to be terminal. Though I haven't been able to find anything backing that up, so maybe you're right and I just misread that part.

According to this , it seems the norm to be offered a termination for cleft palate .

I dont know I am not an expert, but my dh's mate has a cleft palate. It is so severe he hasnt been able to have surgery yet and he is 35. I dont know how severe it can be with the lip - dont want to be judgemental. I think maybe the woman concerned was most probably ill informed, she is a real woman with real feelings and if she wasnt given the right information..... I feel sorry for her.

There was a gal on Radio this morning from the Pregnancy Advisory Service who also said what Pie is basically saying, that cleft palate is a term that can describe severe deformity of the entire skull. I don't know how true that is, either, but it took me up short. PAS woman was saying that this was almost certainly going to be one of those cases.

that must be horrible zebra. Is it in-operable? and does it cause other problems?

I don't know, FIO2, but the implication was that "cleft palate" can describe a condition that, as Pie said, is both untreatable & incompatible with life.

Zebra, you and pie are right. Clefting can go right up through the skull and be completely incompatible with life. It's a very variable condition; the vast majority of cases are mild but the more severe sorts are devastating. I think it's important to hear all the facts in this case before anyone is condemned, health professionals or mothers.

so glad tanum you have got involved! I think there must be more to this story really... but I am naive.

No you're not, fio2, you know far more than most about genetics, I just wish it was for nicer reasons.
xx

thanks tanum. It is funny I was talking to my mum today and was saying isnt it funny how I had genetic couselling for cystic fibrosis ( because of my sister ) and then have ended up having genetic counselling with my dd- but for different reasons. My life seems to be turning full circle..

tamum i initially thought this case must be due to trisomy 13 or something, but it doesn't seem to be. Can they pick up the "degree" of cleft palate on a scan. My cousin's little boy had a severe cleft palate but that wasn't picked up until birth.

I hope (awful though it sounds) that there is more to this case, a late termination when compatible with life is obviouly horrible but completely understandable. I'm just cynical as I have heard of so many cases where disability = instant offer of termination.

No jimjams, I agree with you, this doesn't sound as though it's a trisomy, that would surely have been mentioned immediately if it was. I don't know much about scanning to be honest, but I would have thought that really severe clefting would be picked up pretty easily as it's usually associated with quite bad skull malformation.

I know exactly what you mean about hoping there's more to it; me too. Hard to have much faith in human nature otherwise. I have seen at least one paper where medics were expressing great surprise at the number of mothers who requested terminations for cleft palate, but obviously you don't know what they had actually been told by others.

Fio, have you had any news back yet after the genetic nurse's visit, or is it just a case of waiting for a referral?

I hope there is more to this than it is presented. But I just feel worried that mums and dads are given false information when these 'tests' come back,

My Mum had a lady ring her up recently asking her about CF. Her baby had got it(in utero) , she was 25 weeks pregnant, and had just found out. She was distraught, the baby was kicking and the rest. She did decide to keep her baby and he does have mild CF and is doing well My Mum didnt know what to advise her, she has looked after a child/woman with it - what do you say?

But I am not judging anyone who decides to abort a baby who is severely disabled by illness/syndrome I do not know what this lady or family have had to go through - sorry

maybe if they told you the whole story you would know but..them maybe you wouldnt and everyone has their own reasons.

tanum we are going on monday. I bet you will know her dead worried though.......

Oh good luck fio! I do hope it's good news. I'll be thinking of you.

There is a long piece in the Guardian today about this case - here - it includes the details of the 1967 Abortion Act and some of the changes made in the 1990 Human Fertilisation and Embryology Act - I knew about the change down to 24 weeks but didn't realise that only applied to 2 categories (affecting the physical and/or mental health of the mother or her existing children) and I certainly didn't realise that 3 categories had had the time limit removed.

It also seems to imply that there is a limit of 28 weeks to save the mother's life????? And what is the difference between C and G except the words "grave permanent"? I know these things have to be worded incredibly carefully, but still...

And Marie Stopes International wants "abortion on request" - implying no restrictions at all?

The Abortion Act 1967
The act permits abortion by a doctor in an NHS hospital or approved centre. Two doctors must agree in good faith that one or more of the following criteria apply:

A The pregnancy involves more risk to the life of the woman than if the pregnancy were terminated;
B The termination is necessary to prevent grave permanent injury to the physical or mental health of the woman;
C The continuance of the pregnancy would involve risk, greater than if the pregnancy were terminated, of injury to the physical or mental health of the pregnant woman;
D The continuance of the pregnancy would involve risk, greater than if the pregnancy were terminated, of injury to the physical or mental health of any existing child(ren) of the woman's family;
E There is a substantial risk that if the child were born it would suffer from such physical or mental abnormalities as to be seriously handicapped; or in an emergency, certified by the operating practitioner, as immediately necessary:
F To save the life of the pregnant woman;
G To prevent grave permanent injury to the physical or mental health of the pregnant woman.

Human Fertilisation and Embryology Act 1990
Section 37 of the act changed the Abortion Act. It introduced a time limit of 24 weeks for grounds C and D. Grounds A, B and E are now without limit. Previously, a 28 week limit applied for all grounds.

This may be controversial, but I actually agree with abortion on request for early terminations - up to 12 weeks for example. I don't think women should be forced to have children if they don't want to. It's the late abortions that I think can't be like that - too horrible.
I found a cleft palate site on the internet with stories of real children. large clefts can look absolutely horrific on newborns - there is one little girl who was born with a huge cleft that went right up to her eye - poor thing.Shes had to have a LOT of surgery, has damaged eyesight (though can see) and was born deaf (it sounds as bad as it can get, actually). But after repairs and cochlear implant treatment for the deafness she looks really good (not totally 'normal' but she's happy with herself) and can hear and speak as well as sign. She is very, very much loved by her family. I don't envy them or her in what she went through (it was a real education for me to see this site) but she does seem a total asset to her family.

The quote didn't mention time limits though. If they'd said "abortion on request under 12 weeks" it would be more acceptable - but even then, who decides if a pregnancy is at 12/13/14 weeks?

janh- F isn't listed- so surely there's no limit to saving the mother's life (I thought in law if it came down to a choice- mother or baby- it was always mother as the baby isn't deemed alive until moment of birth).

I agree with termination on request pre- 12 weeks. Without that you just introduce backstreet abortions or travel to another country to get abortion (eg Ireland to England- is abortion still illegal in N Ireland btw- it was until recently if it isn't).

I would have thought that if it was late on in pregnancy and thre was a threat to the mother's life then an emergency c section with baby put ito scbu would be possible - perhaps not as I'm no medical expert but it's what I always imagined happened.
my tuppenceworth is similar to others here - right to abortion on demand up to maybe 12 weeks - but informed decision - I never realised how developed babies are even at 12 weeks - somehow I alsways imagined a cluster of cells up to about week 16 until I actually got pregnant and started looking at all the scan pics

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