Reoccurring NTDs

[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. Xx

I don't know much about this, but didn't want to read and run. You might get more response in the antenatal tests section of the site? I'm really really sorry this has happened to you. I hope you have just been very unlucky and that a better outcome is waiting for you.

Out of interest has anyone prescribed a higher dose of folic acid to you? I've been advised to get 5mg for my next pregnancy.

Thank you for your reply @LolaJ87. Yes I was on a higher dose of FA for my second pregnancy and guess I will take it again should we try again. Thanks again 🙂 xx

Really sorry you have been through this twice. I hope you are getting some real life support - I just went through it once and it was one of the most traumatic things I’ve ever experienced.

Have fetal medicine offered you an appointment to review risks and eg whether any medications you are on could be increasing the risks? I’d encourage you to reach out for mental health support as well if you think that would be helpful it’s immensely stressful trying again after these kind of loss and there are perinatal mental health teams that could support you in your next pregnancy and trauma teams if you think you might have some level of ptsd after going through multiple Tfmrs.

After I lost a pregnancy to Ntd I read about the ponti study about recurrent ntds and using myo-inositol as well as folic acid supplements. It’s not made it into NHS treatment protocols yet but there are several studies suggesting it might reduce the risk of recurrence (but none with big enough studies to prove it definitely works).

I read around the subject and decided to buy myo-inositol to take for my next two pregnancies (which were both healthy). If you google you can read the studies yourself and decide whether that’s something you’d feel comfortable doing based on the current state of scientific evidence. I obviously don’t know whether that’s what made the difference but I’m glad I did take it.