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Jodies Story

Jodie sent in this very powerful and moving story about her experience of a very rare Neural Tube Defect (NTD). Neural Tube Defects vary enormously, some lead to very severe or life threatening conditions, others are much less severe. 

Dear Go Folic

Jodie pens her thoughts about Go Folic!My partner and I had waited ten years to try to start a family. After only  4-5 weeks I did a test and was amazed to see it was positive! I went to my GP and she prescribed folic acid, at this point I was roughly 26 days pregnant. 

I took folic acid every day for 12 weeks as recommended, but of course I had already missed the crucial early weeks of pregnancy . The three month scan appeared normal but weeks later we were told the devastating news, our baby boy had a neural tube defect. The lesion was on his skull, at the front, and this is very rare.  His brain was not formed as it should be and he would have suffered so much in his little life – we were not able to watch our boy suffer, be in pain, have no quality of life. We made the hardest decision ever – to terminate my pregnancy at nearly 27 weeks.

The professor advised that I would have to give birth to my baby because a caesarean section would not be performed to protect my fertility. On the 9th of September 2010, three days after my own 31st birthday, I gave birth to Max Robert Haynes. He weighed 2lb 6 oz and was beautiful. He did have the lesion on his tiny nose and a bump on the top of his forehead. 

I know that we might of been able to prevent this happening by taking folic acid before we got pregnant – this will always play on my mind.

Why isn’t this common knowledge? I know to take folic acid when you are already pregnant, although there are people that don’t take it at all, but to take it when you’re trying – I had never heard of before.

I hope that my letter can help ASBAH in raising awareness of how important it is to take folic Acid.

Regards

Jodie

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Go Folic! is led by:

Spina bifida • Hydrocephalus • Information • Networking • Equality - SHINE (Registered Charity No 249338), covering England, Northern Ireland and Wales. Scotland is covered by the Scottish Spina Bifida Association - SSBA (Scottish Charity No SC 013328).

Our special thanks go to the Go Folic! Women's Nutrition Project in San Francisco for their inspiration and support.