I’ve had two pregnancies affected by anencephaly and acrania, severe forms of neural tube defect (NTD), and I’d like to share some good news about a potential preventative treatment.
Before the first pregnancy, in 2010, I’d taken folic acid in Pregnacare for a year, but found out at our 12 week scan that the baby had the NTD and couldn’t survive.
The hospital told us that this was really rare – just an unfortunate incident and that having had this happen once didn’t increase the chances of it happening again – but they advised me to take 5mg folic acid every day before conceiving again.
I’d been taking the extra folic acid, plus Pregnacare for all my other vitamins, for about 6 months before I got pregnant for the second time, in 2012, this time through IVF. Again, we received the same news at the 12 week scan.
The hospital told me that it was another unfortunate incident and that it didn’t mean it would happen for a third time, but for us it all felt like too much of a coincidence to be as random as they suggested.
We had loads of questions but no one could answer them; our GP hadn’t ever seen this happen to a patient before, the hospital said it was an accident, no one knew what caused it. So we embarked on our own research and eventually came across the PONTI Study at University College Hospital in London.
The idea behind the study is that a B vitamin called Inositol could prevent the recurrence of NTDs. The Inositol affects the foetus at day 21 of development, ensuring that the neural tube develops properly.
The PONTI doctors could answer most of the questions I‘d been told were unanswerable: yes, it was genetic, we just don’t know which gene yet. Yes, my baby was small on the 7 week IVF scan because NTDs delay development. Yes, this scan showed the baby had exomphalos because this is associated with NTDS. And crucially, yes, having had this happen once the odds of it recurring do go up, and rise even further if you’ve had it twice, to about a 50% chance of recurrence.
But for the first time we had some hope. Although I was too late to participate in the study (which would have been scary as I may have ended up in the placebo group), the PONTI doctors were really helpful and supportive and advised me to take 1g of Inositol, plus 5mg folic acid and Pregnacare, every day, up to 12 weeks of pregnancy.
I’m now 20 weeks pregnant. I’ve had scans at 10, 12, 17 and 20 weeks and the baby is developing normally. And whilst the study hasn’t published its results yet, I hear that things are positive and some healthy babies have been born.
If you’ve had an NTD pregnancy my advice would be to look at PONTI, and to look into taking Inositol before you try to conceive again. Boots don’t stock it but you can buy it in many local chemists or direct from the manufacturer – I used this one made by Solgar:
www.solgar.co.uk/SolgarProducts/Inositol-500-mg-Vegetable-Capsules.htm
I’d be happy to talk to anyone who wants to know more. Having an NTD like this is devastating, and is made so much worse if no one can tell you why. Many doctors don’t seem to know about PONTI so people are left in the dark – I hope by sharing this other couples can find some hope too.