We have a child born with spina bifida, and through his experiences, we have learned a lot about the illness. What we would like to share, however, are two very important pieces of information that are not so readily available for parents-to-be. We wish to share the following information so that we can keep Am Yisroel healthy and informed.
When our child was born with spina bifida (myelomeningocele), we were totally shocked and unprepared. Even more shocking was the idea that we should have known about the spina bifida from the beginning of our pregnancy, according to the many doctors we were treated by. There are two very crucial pieces of information that we have learned about and would like to publicize:
It is important for young women to take vitamins. Vital nutrients take months to enter and stay in your system. Folic acid is crucial in helping to prevent spina bifida, so young ladies should start taking it as early as possible. (Don’t take our word for it. Ask your doctor!) Folic acid is available in every pharmacy and is not expensive at all. All women of childbearing age should consume 0.4 mg (400 micrograms) of folic acid daily to help prevent spina bifida and anencephaly. CDC estimates that 50-70% of these birth defects could be prevented if this recommendation would be followed before and during early pregnancy.
Our second piece of advice is for women who are already expecting. There is a simple blood test that can be drawn during your routine doctor’s appointment. It is called an AFP (Alpha-Fetoprotein) Test and it can detect issues with your pregnancy early on. This is not to be confused with an amniocentesis, which is another test that cannot be performed until much later on during pregnancy and is much more dangerous to the unborn child. The AFP is a beneficial tool to help prepare the mother and child for a healthy pregnancy and a safe delivery. If we had known that our child had spina bifida, there would have been changes made to our delivery, including having a neurosurgeon on staff, having the ICU on standby, and having a C-section, all to ensure the baby’s safety and wellbeing. Don’t be afraid to get this blood test.
Tzvi and Sara