Everything You Need To Know About Spina Bifida

October is Spina Bifida Awareness Month! When you are a new parent expecting a child with Spina there is a lot of uncertainty. Spina Bifida is the most common disabling permanent birth defect affecting approximately one hundred sixty-six thousand people in the United States but even with it being so common people still tell me that they didn’t know it was a disability until they stumbled across my blog. Spina Bifida has no cure but there is hope because more research has been done and if you were born today with Spina Bifida you would still have struggles because no doctor can cure Spina Bifida but it won’t be near as many as someone who was born in the ’90s because doctors have learned more about this condition and can prevent further damage better than they could twenty years ago. If you are a new parent looking for the basics of Spina Bifida to help put your mind at ease I have put together some basic information to help you learn more.

Is Spina Bifida a death sentence?– When you are a new parent one of the biggest concerns for any parent is will my child die young? Everyone is going to die eventually but because medical advancements have come a long way it is not a death sentence to get a Spina Bifida diagnosis and there will be challenges with Spina Bifida but doctors have saved many lives of people with Spina Bifida and sometimes we still may need assistive devices like a wheelchair or crutches to help us get around but even with these challenges we are still able to live long lives just like most abled people can.

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 (which is what I have) 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 if you plan your pregnancies you can lower the risk 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 seventy percent.

Does everyone with Hydrocephalus have chronic pain? According to the Spina Bifida Association eighty-percent of people with Spina Bifida have Hydrocephalus but you don’t need to have Spina Bifida to get Hydrocephalus and anyone can be affected by it. If you have Hydrocephalus you will be more prone to headaches and migraines but not necessarily and for some people, they may not have trouble with headaches or migraines and only get them occasionally. Every individual is different and not everyone with Hydrocephalus will experience chronic pain but most people actually do not. My whole life I didn’t get any headaches or migraines except the occasional headache or migraine until a few years ago when out of the blue I started experiencing chronic pain because of Hydrocephalus that never went away. Yes it is possible to get chronic pain because of Hydrocephalus but so many people do not so I woudln’t worry that much about it until it becomes a problem!

Not everyone has 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 is my child doomed to hospital visits and always needing surgery? The answer is no not all people with Spina Bifida have a million surgeries and some people may have very little while others have hundreds and it depends on the individual. Every case is different which is why it’s so hard to find a cure for Spina Bifida because no case is the same!

How many specialists do you need?– How many specialists you will need depends on the individual and what they struggle with becuase I know people who have my same form who don’t struggle as much so they don’t need to see as many doctors. If you have a milder form of Spina Bifida you may not struggle as much as someone who has more severe types so you might not need to see as many doctors. Some people with milder forms will not have as many problems while others with more severe types with have lots of struggles and will need to see more specialists. I need quite a few specialists such as a neurologist, neurosurgeon, orthopedist, urologist, and also an orthotist to have braces made since I can’t walk and need braces to help keep my feet in the corrected position. I see a lot of specialists so you may be wondering am I at the doctor all the time? When I was a child I visited my specialists yearly but as I have gotten older things have stabilized and now I only need to go as needed like a regular person. Some people with Spina Bifida have more problems so they do have to visit their specialist regularly or it is required to go at least once a year but I have been fortunate I don’t need to.

Latex is a common allergic reaction amongst people with Spina Bifida– Never give someone with Spina Bifida anything with latex because about seventy- five percent of people with Spina Bifida will have a allergic reaction at some point in their life. I personally have never had this reaction but I do avoid it like the plague and everytime I go to the doctor even if it’s one I have gone to one-hundred times I always remind of this because sometimes they forget and it can be quite serious . Experts believe this is because a lot people with Spina Bifida have had to undergo may surgeries where they would be exposed to latex. This reaction may not be as common in people who have milder forms of Spina Bifida but for those who have more severe types we need to try and stay away from it.

Epilepsy is more common in people with Hydrocephalus- I didn’t have my first seizure until I was eighteen and I don’t know the statistics on this but I do know that people with Hydrocephalus who are shunted have a higher likelihood of developing epilepsy at some point in their life than those who don’t have this condition. People with Hydrocephalus have a higher likelihood of developing epilepsy but people without this condition can still become epileptic because epilepsy can happen to anyone!

Spina Bifida is a complicated disability because no one is the same and two people with Spina Bifida with the same form can experience it in totally different ways! I know people with my exact form who haven’t had as many surgeries and have had a totally different experience which goes to show there is still so much we don’t know about this disability. When you are expecting a child with Spina Bifida it’s important to learn as much as you can about Spina Bifida and get your child into the right specialists to prevent further damage but I wouldn’t worry too much about everything thing you read on the internet about things that could happen because they may happen. There are lots of problems that people with Spina Bifida could have that may require surgery but some people never have them so I wouldn’t worry about it too much until it becomes an issue and you start to experience pain. If you do start to experience pain express that to your doctor because I can’t tell you how many times I have gone to the doctor and though I had this huge issue and it turned how to be something incredibly small. If you are expecting a child with Spina Bifida and are worried if everything will be okay talking to someone who has this disability and is living may put your mind at ease because sometimes all it takes is a disabled role model! What would you like to know about Spina Bifida?

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2 thoughts on “Everything You Need To Know About Spina Bifida

  1. You’ve done a fab job of covering this condition and in explaining Hydrocephalus too. I didn’t know much about Spina Bifida other than the basics until I had a client in my old job with it (yeeeeeears ago now) and I learned a lot through working with him. He struggled quite badly as he was also on dialysis. It struck me as one of ‘those things’ where we know the terminology but don’t know much about the condition, what it really entails or how people experience it. Fantastic post!

    Caz xx


    1. Thank you, I’m glad you’re learning more about Spina Bifida because I’m always unsure if I’m explaining things good enough or if I need to break it down more! I have many challenges and struggle quite a bit but I have friends who have my same from who don’t struggle as much so in goes to show there is so much more to learn about this disability because everyone is so different.


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