What people with open spina bifida need to know about folic acid

Bringing a child into the world is a big decision, and for people with open spina bifida, family planning can be even more complex. Folic acid, also known as vitamin B9, plays an important role in helping to prevent congenital conditions, including spina bifida. We know for some of our members this raises difficult feelings and concerns. However, it's crucial to recognise that spina bifida isn't the only condition prevented by folic acid. Folic acid also prevents the nearly as common, and always fatal condition, anencephaly. Often health messaging about folic acid doesn't make this clear. In this post, we'll explore the importance of folic acid in family planning with open spina bifida, taking into account the facts and the range of feelings on the issue.  
The goal of recommending folic acid is not to suggest that individuals with spina bifida have less value or that their lives are any less meaningful. It's about making informed choices to increase the chances of a healthy pregnancy and a positive outcome for the baby. Preventing congenital conditions is not about devaluing anyone's existence, it's about enhancing the quality of life for everyone, including future generations. 

So why take folic acid? 

During pregnancy, the brain and spine are built from a basic structure called the neural tube. Folic acid helps the neural tube to form correctly and significantly reduces the chance of neural tube defects (NTDs), and this does include open spina bifida. NTD prevention has led to folic acid being commonly recommended to women planning a pregnancy. One aspect that often gets overshadowed is that folic acid doesn't help to prevent spina bifida only. It's also a potent means of helping to prevent other NTDs, including anencephaly. Anencephaly is a condition where the baby's brain and skull don't develop as they should. All babies with anencephaly die before or shortly after birth. Anencephaly accounts for around 42% all NTDs in the UK and leaves hundreds of parents bereaved every year. Folic acid can help prevent around 70% of these tragedies from occurring. 
The dose of folic acid you’ll commonly see recommended for anyone who could become pregnant is 400 µg daily. However, some people, including those with open spina bifida, have a higher chance of a pregnancy being affected by an NTD so a higher dose of folic acid is recommended. If you have open spina bifida and are planning to start a family, and opt to try to prevent NTD affecting your baby, you should start taking a 5 mg supplement daily for at least two months before trying for a baby. You should continue taking the supplements, till the end of the third trimester (3 months into pregnancy). The 5 mg folic acid supplements are only available on prescription so you should make an appointment with your GP. This is also an important opportunity to discuss other aspects of pregnancy preparation. 
The decision to take folic acid when planning a family is deeply personal. Concerns about disabled identity and erasure are valid and must be respected. However, it's essential to understand the wider context of folic acid's role in prevention of all neural tube defects. Folic acid's potential to help prevent not only spina bifida but also anencephaly demonstrates its importance in pregnancy preparation. Ultimately, the choice to use folic acid supplements should be informed and empowered. It should be made with the understanding that it can contribute to better health outcomes for you and your future child.

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