baby after anencephaly loss

[kirstblxo]

just looking for some advice as i have got myself in a bit of a state... i lost our baby girl to anencephaly only 5 months ago. since then i have been on the 5mg of folic acid. i found out on the 15th june i am pregnant and super excited. although the week before i found out i hadnt been taking my folic acid to due being very unwell with gallbladder issues, i am now petrified that the week i have missed is going to make our rainbow have anencephaly too. just looking for some stories and maybe to put my mind at ease. thanks

1 week would not be enough to clear out your entire stores of folic acid.

I found out at 20 weeks that my GP should have put me on 5mg of folic acid due to family history and high BMI. As she didn't tell me, I was just on a standard pregnancy vitamin until then.

Current bump is 30 weeks and doing nicely, with no concerns about neural tube defects.

How far along are you?

thats good to hear just very nervous about neural tube defect happening again as it was awful and broke my heart!

yeah thats what happened to me with the last pregnancy they didnt tell me i needed to be on the 5mg folic acid until it was too late which i was very angry about as my doctor knew i was TTC!

i am estimated at 5 weeks and 6 days ( but not entirely sure as AF has been messed up since losing my girl) so still early days but have very very strong pregnancy symptoms this time around!

Hi op , I'm sorry for your loss.

I lost a baby to spina bifida in 2016. I knew nothingof ntds before then , it was a massive shock to me.

I was prescribed 5mg folic and took it a before I began to ttc again. However I found knowledge of how long folic acid actually stays in your system really hard to find. Some say you need to take it for 3 months , some for 6...some say that you pee it out so just take it daily!

I would say for now, just focus on looking forward and getting the care you require. Are you happy with your hospital? Will you recieve an extra scan at 16 weeks to potentially diagnose ntds earlier?

Congratulations by the way and please stay positive

hi @MagicFajita

im so sorry you experienced the heartache of neural tube defects yourself. i had heard of spinal bifidia lots of times prior to my baby but never of the condition our wee girl had. i was in the most shock as i had 2 miscarriages in the past and was so happy to reach to 12 weeks. it was devastating.

i have been taken it religiously just that one week i wasnt as i could hardly drink water i was in so much pain! so im pretty worried but hoping its not affected baby!

i am being looked after by fetal medicine this time round. i will have a scan at 6 weeks. 9 weeks and then 12 weeks! our girl got diagnosed with anencephaly at only 10 weeks pregnant but they couldnt tell us until 12 weeks as they need to be 100% sure before going over options with us but i knew that she had the condition and her skull wasnt going to develop.

we got to hold her and touch her and spend a day with her before we said our goodbyes and we named her sophia. so small but shes left a huge imprint on our heart.

FIRST SCAN IN 4 DAYS

It looks as though they're already taking really good care you you op , though I do understand your anxiety as it's hard to relax after you've had a loss.

I hope your pregnancy is trouble free and that any worries you have are taken seriously by the hospital as you progress.

We went on to have a son just over a year after we lost our little girl , he's now 8 months old. We were also given amazing care after everything we went through previously.

I hope the scan goes well

This was my post… I just want to update for anyone looking in the future.
this pregnancy I unfortunately had a partial molar pregnancy. I then fell pregnant again and unfortunately had a second baby girl with anencephaly..
after 2 years break and some research I did myself and taking supplement and vitamins I am so pleased to say that I welcomed my rainbow baby girl in February 2022 💖💖