Bringing hope for Spina Bifida warriors

If you are expecting a child with Spina Bifida then 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 that when you have or are expecting a child with Spina Bifida learning about the condition is so important but 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 may give you anxiety. To put your mind at ease here are a few things you should know about Spina Bifida!

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!

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 severe than others so, 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% of people who have 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 may have minor disabilities.  Most people with this condition grow up fine without any complications but just to be sure it is always a good idea to have regular doctors visits to rule out any other serious health conditions.
  • Myelomeningocele-This is the most serious type of Spina Bifida! Myelomeningocele is caused when a baby is born with a sack sticking out from there spine. The sac contains nerves and part of the spinal cord that may have been damaged and in order to prevent any further damage, surgery is vital within two to three days of birth! People with Myelomeningocele may need to use assistive devices such as crutches or a wheelchair to help them get around so they can do more for themselves and be less dependent on others.

Can you prevent it?- Spina Bifida can happen to anyone so 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 they become pregnant lowers the risk of having a baby with Spina Bifida or any neural tube defects as much as 70%.

Does everyone with Hydrocephalus have problems?- According to the Spina Bifida Association eighty-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 is that 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 and some may even never even need a shunt!

Does everyone with Spina Bifida have a million surgeries- For those of you who know me personally you are well aware that I have had 20 +surgeries. Getting a Spina Bifida diagnosis can be scary and for those of you who are new parents you may be wondering does everyone with Spina Bifida have a million surgeries? The answer is no not all people with Spina Bifida have a million surgeries some people actually have very few it all depends on the individual every case is different!

If you are a new parent expecting a child with Spina Bifida I hope this post helped! Spina Bifida has a lot of challenges but it is not as scary as you may think. So stop getting on google and researching all the complications that come with Spina Bifida because you never know if you will even have any of those problems. If you really want to know what life is like with Spina Bifida talk to someone who actually has it they be able to give you insights google cannot. If you are a blogger with Spina Bifida or have questions about it please leave them in the comments below!

Let’s connect 


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