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Anecephaly

Hi, My names Laura and i'm relatively new to these forums and was wondering if there was anyone else that has had to suffer through a diagnosis that baby has anecephaly?

For those that like me before i found out have never heard of this its a NTD that affects the growth of the skull and brain which means that the baby has no chance of survival.

I was absolutely devastated as was my oh when we were dealt this devastating blow, it was in July of 07 and i was 13wks when told and 14wks when we made the deciscion.....THE most hardest deciscion to terminate our much wanted baby. I am now currently 15wks pregnant and thankfully due to increased folic acid intake everything is so far absolutely fine, i am however finding things really hard to deal with in the emotions department and am wearing out my oh.

I am hoping that my experience can help others understand the importance of folic acid intake when you start to plan for a baby and not just for when you get pregnant, i was however taking the standard dose and it still happened to me but i have an increased risk as we have spinabifida in the family so that may be why i was so unlucky, feel free to ask anything if you're interested/curious as i will honestly answer back, This wasn't my first pregnancy but number 4, i was at the stage where you take pregnancy for granted, i now know the reason for the first scan, i learnt the hard way sadly.

I wish everyone the best of health and thanks if you read this.xx

Replies

  • wow..you must have really hurt when you got that news. i agree with you about taking pregnancy for granted....I just had my 5th and luckily we have been fine with all of them. I never for a minute suspected anything would be wrong. If it had I would have been floored. We had a scare as I bled heavily at 35 weeks and she was delivered by emer section as I had placenta previa......she was fine after bit of help and week in hosp.
    glad this pregnancy progressing well for you. Its good that we now know about folic acid. My sis was one of the first to be told to take it and that was only 12 years ago. She was in local paper with her healthy 9lb boy!
    Good luck with rest of your pregnancy and its brave of you to bring up the subject for the benefit of others....maybe useful to post your advice re folic in pregnancy and trying for a baby forum?????
    d x
  • Hi dee dee, thanks so much for your reply and for the suggestions, i will do that now.

    It was hard and still is if i'm tbh, but talking about it is seeming to help and the support you get from on here is amazing! Thanks for taking the time to read this and i wish you all the best with your brood!xx
  • dear laura, have you tried logged on to the arc website (ante-natal results and choices) for help with regards to your emotions. the ladies there are fantastic and will chat to you. just knowing that you are not alone helps. with such a sad diagnosis and terrible ordeal you have been through and continue to go through, your emotions will be all over the place. i know mine were and still are (and i had my healthy baby 3 months ago!). losing a baby is something no parent should go through and i wish you lots of luck with this pregnancy and hope the time passes very quickly so you can be with your baby.
    with love to you
    susan x
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