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Original poster

Annencephaly......whats the chance of this happening again?

11 replies

StormBird · 07/09/2010 13:29

Hi everyone,

Back in May at 15wks PG we found out our baby had Annencephaly. We terminated as this was described as incompatible with life. We are now properly TTC although haven't used any kind of contraception since the termination.

I'm just terrified of this happening again. Can it happen again? Has it happened more than once to anyone else?

Any advice would be great.

Thanks

XXXX

OP posts:
Al1son · 07/09/2010 13:34

I think it's linked to spina-bifida which I had genetic counselling about some years ago. The chances should not be high and can be reduced by taking folic acid.

Have you not been offered genetic counselling? It was a positive experience for us as we felt we were far more aware of the risks and they were a lot smaller than we had feared.

I'd advise asking your GP for a referral.

weepootle · 07/09/2010 13:37

Your chances of it happening a 2nd time are higher than they were before it happened to you I'm afraid. I know, because I had a baby born with Anencephaly.

I can't believe you haven't been advised more on this. You should be taking a high dose (5mg) folic acid before you ttc again and this will really reduce your chances.

weepootle · 07/09/2010 13:51

I can't find anything to support this but I was given documentation at the time which gave the odds at something like 1 in 1000 of it happening a first time and 1 in 250 of it happening again.

Habbibu · 07/09/2010 13:57

I'm so sorry for your loss. dd1 had anencephaly, and died at 21w. I took high dose (5mg) folic acid for 3 mo prior to ttc again, and now have 2 healthy children. It is critical that you take the folic acid before ttc - this reduces your recurrence risk dramatically. I cannot believe you've had so little advice.

weepootle - think I saw that on an ASBAH leaflet. Will try to find it.

Al1son · 07/09/2010 18:36

I'd forgotten about ASBAH (Association for Spina Bifida and Hydrocephalus). They may well have a local support worker who can give you information or point you in the right direction for genetic counselling.

www.asbah.org/

Original poster
StormBird · 08/09/2010 14:02

Hi Everyone,

Thanks for the advice. I have been taking 5mg of Folic Acid since I had the termination. I started counselling yesterday as I hadn't felt quite ready for it until recently. But what is Genetic Counselling? Is there a difference?

x

OP posts:
Al1son · 08/09/2010 21:37

Hi Stormbird,

Genetic counselling is basically advice from an expert in genetics. They get the details of your previous pregnancy and any relevant information about you and your family history and use it to work out the chances of you having a child with a particular disorder in the future. It gave us the concrete information we needed to go ahead with TTC.

HTH

Original poster
StormBird · 09/09/2010 12:37

Thanks Al1son I'll look into it.

x

OP posts:
Original poster
StormBird · 09/09/2010 12:38

Is it genetic then? I was told thst it is basically just one of those things, it was explianed to me like it was a feak accident.

OP posts:
Al1son · 09/09/2010 23:08

The baby we had after the counselling is now 13 years old so I imagine the advice we were given could well be out of date by now. We were given to understand that there was a some sort of genetic pre-disposition but the risk was very small. What you were told may very well be correct.

That is the kind of thing an ASBAH advisor might be able to clear up for you before you see a genetic counsellor.

Original poster
StormBird · 13/09/2010 13:10

Thanks you again xx

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