Everything You Need To Know About Spina Bifida

If you are expecting a child with Spina Bifida you probably have lots of questions! How many specialists will my child need? Will my child be able to live a normal life? Living with Spina Bifida has its challenges and can change at any time but living with a disability is not as scary you may think because so many of us are thriving just like abled people are. It is important to learn as much as you can about Spina Bifida if you are expecting a child with it because you don’t want to be misinformed but googling a bunch of information can give any parent anxiety they don’t really! If you a new parent expecting a child with Spina Bifida and are worried about it here is some basic thing every parent needs to know in order to be well prepared.

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 but not everyone will have this many. 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 may need hundreds. Every case is different which is why it’s so hard to find a cure for Spina because every case is different and no two people are the same. Sometimes you may have a lot of trouble as child but as a adult usually things start to stablize and you don’t have as many difficulties as you did as a youngster so that’s something to look forward to!

How many specialists do you need?– How many specialists you will need depends on the individual and what form you have because some people struggle more than others. If you have a milder form of Spina Bifida you may not struggle as much and not need as many doctors whereas someone with severe types may need a specialist for pretty much every part of their body. 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 my feet don’t stay in the corrected position so my braces help keep me stablized.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 and do need to get regular tests done but don’t need to have regular doctor’s visits.

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 if they forget. 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 stay away from it and take extra precautions.

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 often known as the snowflake condition because it’s a complicated disability and two people with the exact form can experience it totally differently which is why it’s so difficult to find a cure for it. I know people with my exact form who haven’t had near as many surgeries as I have which goes to show there is still so much doctors don’t know. 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 about it too much because although Spina Bifida can have a lot of complications and require many surgeries that doesn’t mean it will happen because sometimes it doesn’t. Don’t worry you start to experience pain then visit your doctor because it may not be as serious as you think and I can’t tell you how many times I worried about a medical problem and it turned out to be something really simple. Everything is going to be okay and if your worried it’s not talk to other disabled people living with the condition to help put your mind at ease. 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

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    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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