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To the Parent Whose Baby Received a Spina Bifida Diagnosis

If you are expecting a child with spina bifida, you may be spending a lot of time on google to try to get as much information as you can about it. Although I do agree learning about the condition is important, doing it compulsively can be damaging to your mental health. You may come across issues that may or may not happen to your child and that can cause anxiety.

To put your mind at ease, here are a few questions you may have about spina bifida:

1. Is spina bifida a death sentence?

People with spina bifida are thriving every day and although there may be many challenges, because of medical advancements and technology, people with spina bifida are living longer, so no it’s not a death sentence.

2. What is spina bifida?

Spina Bifida is a birth defect in which the spinal cord does not develop properly. Like many disabilities, there is more than one form of spina bifida and some are more involved than others. To help you get a better understanding of the different forms so you can better prepare, here is a brief description of each of the different form of spina bifida.

  • Spina bifida occulta: This is often called hidden spina bifida because 15 percent of people have it and they don’t know it! Spina bifida occulta usually does not cause harm or have any visible symptoms and is usually detected by having an X-ray of your back. Spina bifida occulta usually does not need to be treated.
  • Meningocele: Meningocele causes part of the spinal cord to come through, like a sac that is pushed out. Nerve fluid is in the sac and there is usually no nerve damage, but sometimes, you may have minor disabilities. Most people with this condition grow up fine and without any complications, but just to be sure, they should be checked by a doctor for any other serious conditions that may occur.
  • Myelomeningocele: This is the most serious type of spina bifida. When parts of the spinal cord and nerves come through the open part of the spine, it causes myelomeningocele. Myelomeningocele also causes nerve damage and other disabilities. Surgery is vital within two to three days of birth to prevent any infections and save the spinal cord from more damage.

3. Can you prevent it?

Spina bifida can happen to anyone. Although you cannot prevent it, you can take precautions to lower the likelihood of having a child with spina bifida. According to the Spina Bifida Association, women who take 400 msg of folic acid every day before becoming pregnant lower the chance of having a baby with spina bifida or any neural tube defects as much as 70 percent.

4. Does everyone with spina bifida have hydrocephalus?

According to the Spina Bifida Association,  80 percent of people with spina bifida have hydrocephalus. For those of you who have been reading my posts about how I have been having headaches because of my hydrocephalus, you may be wondering if that is the case for everyone. The answer to that question is no. Every individual is different and while some people may need a shunt revision every couple of years, others may never need one.

If you are a new parent expecting a child with spina bifida, I hope this helps. Spina bifida can present challenges, but it is not as scary as you may think. Chances are your child will not have every complication you read about on google. If you really want to know what life is like with spina bifida, talk to someone who actually has it. They are the ones who can give you insights google cannot.

Getty image by jacoblund

Originally published: October 18, 2018
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