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Experience with acrania/exencephaly?

(8 Posts)
KEB123 Sat 09-Mar-13 09:59:58

Would anyone be able to share their experiences of trying to conceive again after a diagnosis of acrania? I have a nine month old healthy son and was pretty surprised to find out in jan we were expecting again! Very excited once that initial shock had worn off. As I'm still bf my son I had been on 400mcg folic acid in my supplement for that altho probably not taking it as religiously as I took it pre pregnancy the first time.

Anyway twelve week scan was on Tuesday and it was apparent fairly early on something was not right with babies head. Diagnosis of acrania was given and I had a surgical termination on Thursday. We are pretty devastated and I'm keen to try again but at the moment have been given no info on chances of recurrence, when to try again etc other than that I will need high dose fa which I'm going to see doctor for on Monday.

It would really help if anyone out there felt able to share any experience, positive or negative, of conceiving again after this blow.

Thanks in anticipation

LittlePoot Sun 10-Mar-13 07:04:21

I'm so sorry to hear about your loss. I haven't had direct experience of anancephaly but a good friend of mine went through exactly this while I was going through termination for chromosomal abnormalities. She took the high dose folic acid for three months before trying again and had a happy healthy baby girl and is now 30 weeks pregnant with a little boy-also with no issues. However, she did have an early miscarriage before each of these pregnancies-no way of telling if this is linked or not. My understanding is that there is quite a high chance of recurrence but that the folic acid makes a massive impact. But there certainly can be a happy outcome.

KEB123 Sun 10-Mar-13 10:26:32

Oh thanks for that. There is some light at the end of the tunnel then. That was the impression I've got from reading around it so think will get on the fa ASAP and then lots of finger crossing for next time...

Lyftiduft Sun 10-Mar-13 18:08:01

Hi we had a diagnosis of acrania, we tfmr on 4th December. I'm on the fa high dose but we're still waiting to TTC- our hospital ran full genetic tests and they found our boy had a completely unrelated genetic 'abnormality' as well, and they're now testing us to find out more about it, though it might have been insignificant and something one of us carries. I've had 3 early mcs as well (all 6 weeks) and they're investigating this too.

I use the ARC forum too and from what I've read we can be hopeful for the future. Take care of yourself. I felt strong to start with but then crumbled, now things are a bit easier again, 3 months on, but still have bad days.

Good luck and sorry for your loss

duchesse Sun 10-Mar-13 18:19:46

I am sorry for your loss.

I had a miscarriage at 13 weeks in 2006 of a baby that probably had anancephaly (as far as could be seen on the scan). The baby had already died by then so I had an ERPC rather than a termination. DD3 was subsequently born in 2009 with a Y shaped sacral cleft, which is another potential neural tube defect.

No idea why, but believe from what I've since read that once you've had one neural tube defect you're more likely to have another. Have you been advised to take folic acid all the time just in case?

May you heal fast.

KEB123 Sun 10-Mar-13 19:37:28

Thank you both for sharing your experience, I'm so sorry you've been through this too. We requested no further tests on baby this time although if god forbid it happened again I would want them done. I just couldn't face them taking him away as we bought him home to be buried. They have told us nothing about what to do now, I was planning to phone ARC tomorrow to see what advice they have. Will start fa as soon as I can as even using contraception I guess you can never rule out conceiving.

There seem to have been massive ups and downs in my mood since tues, hormones all over the place I guess. Thank you again for your advice and kind words, it really helps

lougle Sun 10-Mar-13 21:28:53

Hi KEB, sorry to hear of your news. I know someone who had a baby with anencephaly and she has gone on to have 6 more children. I think she had to take 5mg FA when she was pregnant to reduce recurrence risks, so you may want to ask your GP for a prescription, because you can't get that amount over the counter. It would be a bit of a pain to have to take 12 tablets each day!

StormBird Tue 26-Mar-13 10:56:22

As someone who has experienced 2 Pregnancies that have ended in termination due to Annencephaly I would highly recommend getting your doctor to put the high strength Folic Acid 5mg on repeat prescription for you and taking it all the time.......if only I could take my own advice eh!!
I found out I was PG this morning, I have high strength Folic on repeat prescription as my 1st and 3rd Pregnancies were terminted (I had a very healthy baby boy in between). I haven't been taking my FOlic Acid as I have been so constipated (sorry TMI) and then WHAM I'm pregnant - I could kick myself. I have an appointment with the Doc this avo to discuss options - I'm not sure I can just wait and see what happens.
Anyway, I'm so sorry for your loss and I wish you every success for when you decide to TTC again, just take the 5mg Folic Acid x

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