Reoccurring NTDs - Spina bifida and anencephaly

[CyanPanda]

Hi there,

I’m new to mumsnet so sorry if this is in the wrong place…

I was hoping to hear from others who have also experienced reoccurring NTDs, specifically spina bifida, then followed by another pregnancy affected by anencephaly.

No genetic reason has currently been identified, so we’re left with no reason or understanding of why this has really happened and what this means for the future, other than that we’re at an increased risk (of around 10%) of it happening again.

I’ve read several stories of 2 consecutive pregnancies affected by anencephaly, so am concerned this is what a third pregnancy may bring. I haven’t found many where woman have had Spina bifida followed by anencephaly though…

It would be good to hear from anyone with any similar experiences and it would be really good to hear some hopeful stories if there are any out there. X

I am so sorry for your tragic experiences.

I don’t have the any experience of both defects that I know about……multiple miscarriages and then had a baby that had SB and Hydrocephalus. In the subsequent pregnancies I did take a prescription high dose of folic acid before attempting to conceive again. Have you been prescribed folic acid? Is there any history in the family of the condition?

Unfortunately the risk is high of reoccurrence.

I was closely monitored at the fetal medical unit at Kings in London and was reassured at 12 weeks that there was no defect visible and again at 16 and 20 weeks. Professor Nicolaides was my consultant and Professor Regan at St Mary’s for the miscarriages. I hope you have a good medical team on hand to offer you the support for your next pregnancy.

Hi there

If you have been through a TFMR, the charity ARC are very good and have a private forum only for those who have been through a TFMR. There are some ladies in there who have sadly had two TFMRs and might be able to give you some support.

Mine was for T18.

I have a colleague who had a tfmr because the baby had both SB and anencaphaly sadly.

Thanks so much for reply @Dinnerisburnt , sorry it’s taken me a while to come back to you. Sorry for all your losses. I hope your last pregnancy mentioned was successful?

Yes I have been prescribed 5mg folic acid and have also started taking 1mg inositol as there is some research that potentially suggests promising findings.

No, no family history and nothing genetic identified, so not sure what else we can do to reduce risks. I’m waiting for a follow up with fetal medicine, but I think we were told our reoccurrence risk has now gone up to 10% following second pregnancy. I think/hope we will be offered more scans should we decide to go again.

Thanks again for reaching out x

Thanks for getting in touch @MrsScotland and so sorry for your loss. Yes - I have been in touch with ARC, very helpful. I hope your colleague went on to have a healthy pregnancy ✨ x

@CyanPanda

I went on to have two healthy babies, both of them were cleared of any abnormalities at 12 weeks, and again at 16 weeks and finally at 20 weeks.

I terminated at 23 weeks and I couldn’t have gone through that again. You really should have access to early scans at a fetal medical unit where they are able to look for early signs to avoid a late TFMR.

I have no history in my family either…..just unlucky apparently.

Sending you positive wishes for the future and I hope you get looked after x