anencephaly

[ldt87]

Hi, some of you may know that yesterday I had a termination due to anencephaly. Now I feel like I would like to find out what the chances are of this happening again

I am on a huge dose of folic acid and have been told to wait two cycles before trying again, obviously the chance of going through this again is terrifying.

I really would just love to hear from anyone who has any experience of this, and going on to trying to get pregnant again, anyone who may be further down the line than me, with any advice or information

Thank you in advance xx

I am looking for some hope too jard32. I had a scan at 12 weeks about 6 months ago. I was given the awful news that the baby had no heartbeat and had stopped growing at 10 weeks. Then Monday just gone, I had another 12 weeks scan. I had more hope that the pregnancy was fine and that the baby was going to be healthy. I was still nervous though. I watched the radiologist start the scan and then her facial expressions changed. I looked at her and asked if she was going to give us bad news and she said I'm afraid so. The baby had anencephaly. I am on 5mg of folic acid now and hoping to try again soon as I chose to TFMR. The most heartbreaking decision I have ever had to make. I am looking for success stories too to help me through this particularly difficult time. I too am hoping to have a sibling for my gorgeous dd who is 2 in March. I can imagine that it's going to be hard to not be nervous for the next scan and will probably walk on eggshells for 20 weeks until I get the all clear from the 20 weeks scan.

Hi there

I'm so sorry for your loss.

I had the same thing happen last March and I was absolutely devastated. I waited 3 months and took the 5 mg of folic acid. I avoided the sun (which depletes your reserves and ate a high folic acid diet. Despite everyone telling me it was unlikely to happen twice I was a nervous wreck. The thought of it happening again was beyond frightening.
Thankfully we are pregnant again and all seems to be well and we had an excellent consultant at UCH London giving us extra scans and reassurance. I am now 33 weeks. I won't believe it will be ok until the baby is safely in my arms.
I know it seems like a frightening emotional rollercoaster but try to be positive/brave and distract yourself as best as you can while you wait.

Best of luck
D

www.wakeupsurvivesleep.com

I lost a baby to anencephaly in May 2013. I was 13 weeks. I had been taking FA and the doctor said it was rare and wouldn't happen again. They didn't even offer us the high dose of FA. I had to ask for it based on stuff i'd read on google. They were quite dismissive and wouldn't offer us any additional testing or explanation. I'm pretty sure they didn't believe that i'd been taking FA. After the first loss, i was desperate to try again. I was convinced that if i was pregnant before my first baby's due date (November) that it would help take the pain away. I went on the 5mg dose of FA for 2 months and fell pregnant again in the August. It was a very stressful time. I was absolutely paranoid- eating spinach, brocolli, seeds, anything high in folate. I stopped using plastic tupperware and wouldn't even go into the kitchen if the microwave was on incase any of those things would increase the risk of a birth defect. I lived in a bubble.

In October at the 12 week scan I got the terrible news again that the 2nd baby also had anencephaly. So I ended up losing 2 babies before the November. I found this extremely difficult to deal with. I was so sad and so so angry. We were referred to a geneticist after this (at my insistence). They had no answers either. They have suggested that whatever kind of anencephaly that is affecting us exhibits a recessive inheritance pattern combined with some kind of environmental influence. In short, they don't know and there's nothing they can do for us but there is a reasonable chance it will happen again.

It was a very very dark time; I literally don't know how I got through it. I realise now that for me trying again so soon was just sticking a plaster over a big gaping wound and that I hadn't allowed myself enough time to grieve for the first baby. I was just powering through, tunnel visioned. So much of what people on this post have said resonates with me. Some of these stories are like reading about my own experience.

Since i lost my 1st baby, within my group of friends there have been 14 healthy babies born. All uneventful pregnancies. I have felt so isolated and sometimes i'm just tired of being happy for other people. Sorry I know that sounds bad :S

It's not a success story for me (yet) in as much as i haven't tried again for another baby. It's taken me a very long time (a bit over 18 months) but i finally feel myself again. I went to some bereavement counselling last year (long overdue) and i can't tell you how much that helped. I would highly recommend it for anyone struggling to deal with the roller coaster of emotions that comes with this diagnosis. I initially tried to cope with this myself which in hindsight was not the best thing for me. I'm hoping to try again soon and I'm going to take inositol supplements as well as the 5mg FA this time to see if that helps.

Thanks for sharing your story Jl2014. I can only imagine how much strength that would have taken. I found this thread to be particularly helpful especially in understanding more about this horrible diagnosis. I wish you the very best as you endeavour to try again. Here is hoping for a beautiful healthy baby for you in the near future.
Your story has filled me with hope too DRSLondon. I hope I can have a success story to share soon too. Thankfully work has started again and it is keeping me very busy. I am lucky to have so many supportive people around me, that I feel I can talk to about my situation any time. They have played a key part in helping me through this. I still have a long way to go but will get there. I also wish you the best for the end of your pregnancy. You are so close and I hope he/she is healthy.

I've been following this thread recently as me and my husband lost our first baby on 1st jan 2015 due to Anencepheley. We were told at our dating scan and felt like I'd been slapped in the face! I am 38 and we had been previously referred for fertility treatment. We have been told to try again in 3 months and take 5 mg of folic acid. It was a devastating experience but me and my husband have had each other for support. Time is not on my side so I need to be focused about getting pregnant again. Just so sad it happened to us and now back to square one after several months of trying. Would be good to hear from anyone for some support :-) x

Is this thread still active?
I terminated my pregnancy today at 12 weeks following an anencephaly diagnosis. It's been the most heartbreaking day.
I'm on high dose FA and have been taking it for 3 days now.
I'm 39 so desperately want to try again ASAP but I couldn't cope with another unwell baby.
I feel like I will wait 2 cycles before trying again, obviously I'm super anxious that I won't conceive quickly.
I was totally under the impression that once on high dose FA the chances of it happening again are so so small....but reading this thread has scared the hell out of me!!!
I've been told that u had various risk factors that all combined will have caused this. My mother in law delivered an anencephaly baby at full term back in the 70's, before they did scans, so obviously it's in my partners genes. I wasn't taking FA prior to conceiving and in my first few weeks of pregnancy London had the heatwave of 42 degrees so my FA levels will have been messed up. And finally I'm breastfeeding my 1 year old and wasn't taking any extra supplements so my body will have been running on empty (plus I have a 2 and a half year old so near enough two pregnancies back to back, with constant breastfeeding) Sorry for the essay, just so relieved to have found this community, you all seem to know so much!!!