During the month of October, we celebrate breast cancer survivors and bring awareness to the lives that were lost because of this horrible disease. October isn’t just about breast cancer awareness but it’s also Spina Bifida Awareness month and if you have been reading my blog I would hope that you have some understanding of how my disability affects every aspect of my life. If you are expecting a child with Spina Bifida it can be scary because we live in a world that is not designed for us and there are many uncertainties about life when you have a disability. Living with a disability that has constant challenges is everything I have ever known and is pretty much normal for me but if you are a new parent expecting a child with Spina Bifida you may struggle with the idea of your child always being frustrated because of a disability you can not control. In this post, I am going to tell you a few basic things that you should know if you are expecting a child with Spina Bifida.
The new surgeries are not cures– Fetal surgery is new surgery that is done on unborn babies with Spina Bifida and that is when doctors open the uterus of the mother to close the opening of a babies back while still in the womb. This surgery has helped people who are affected by Spina Bifida to have less challenges because they are not being born with things such as Hydrocephalus and sometimes people have the wrong belief that if you have this surgery that your child’s Spina Bifida will be cured but that is not true. If you were born with Myelomeningcele which is the most severe type of Spina Bifida and is what I have you would not have Hydrocephalus which is huge but you still may have some physical challenges because it is not a cure and there is still so much research to be done.
The exact cause of Spina Bifida is unknown- Some people believe that the cause of Spina Bifida is from not having enough folic acid while your pregnant but there is not enough science to support that claim and the exact cause of Spina Bifida is unknown. If you are trying to have a baby it’s important that you take care of yourself and don’t do anything irresponsible like smoking or drinking while you are pregnant to lessen the likelihood of your child having birth defects but at the end of the day, you have to remember that you can’t prevent every disability or disease and sometimes things happen for reasons we will never understand. If you have done everything to prevent your unborn child from having Spina Bifida and they still do, don’t beat yourself up over it because it’s not the end of the world. Love them because that is more important than wracking your brain trying to figure out why.
It’s not a death sentence– When you have a child with a disability sometimes parents get scared and think that their child can’t live well or that they will die at a young age. Some disabilities do not have a long lifespan but because of medical advancements Spina Bifida is not one of those disabilities and if you take care of yourself you can live to be in your eighties or nineties. If you were born back in the eighteen hundreds with Spina Bifida you probably would not live a long life but today you can because doctors know more about Spina Bifida than they did back then.
Not everyone with Hydrocephalus struggles with headaches/ migraines- Hydrocephalus is when there is too much fluid (going into your brain that if left untreated is fatal. Hydrocephalus affects around eighty percent of people with Spina Bifida but you don’t need to have Spina Bifida to have Hydrocephalus and it can happen to anyone. When you have Hydrocephalus you are more prone to headaches and migraines but not everyone with Hydrocephalus develops headaches or migraine and some people rarely get a headache. For most of my life I only got an occasional headache and it wasn’t until recently that they became more frequent and I needed medication to manage them. Most everyone being born today do not have Hydrocephalus but if you had a child with Spina Bifida before these surgeries existed you don’t have to be scared that they will have as many headaches as me because I don’t know a lot of people who do.
Epilepsy is common in people with Hydrocephalus- Epilepsy can happen to anyone and not everyone with Spina Bifida has epilepsy but it is more common in people with Hydrocephalus who are shunted. Some people with Hydrocephalus never have a seizure but a lot of people do and it’s not something that you should be scared might happen but be aware of it because I didn’t get my first seizure until I was eighteen. Epilepsy changes the way you do things because some types can be very scary and fatal if not treated immediately but you still can live well and safely with epilepsy.
Spina Bifida affects everyone differently- There are four forms of Spina Bifida and some people have it very mild and you don’t even know that they have it while others are full-time wheelchairs. I have the most severe form of Spina Bifida and if you were to look at the level I function at it would tell you full-time wheelchair user but by some miracle, I have been given the ability to walk. Like most disabilities, Spina Bifida affects everyone differently and even though you and your friend have the exact same form of Spina Bifida it still can affect you both in very ways. Some people with Myelomengingcele have had more surgeries than I have by age ten while others go their whole life and barely have any. Don’t get scared because you know someone who has had dozens of surgeries because even though that is my life that doesn’t mean it will be yours!
Bowel issues are the most difficult thing to manage- Bowel issues are common when you have Spina Bifida because the muscles that most abled people have to go to the bathroom I do not have. You can get an ACE which stands for Antegrade Colonic Enema which is a stoma that gives you the ability to have a bowel movement independently but these things are not cures. I can’t imagine life without my stoma because I got my first stoma at age seven to manage my bladder issues which gave me the ability to pee independently and after high school, I got a second one for my bowels. My stoma has changed my life and has given me the independence I would not have without it but it is not a cure because I still get constipated when I am taking probiotics and drinking so much water that I have to pee every five minutes. Bowel issues can be managed when you have Spina Bifida but in my personal opinion, it is the hardest thing to stay on top of because you can be doing everything right and still have moments when you can’t go to the bathroom which isn’t fair!
When you have a disability such as Spina Bifida it will affect every aspect of your life and is the reason why we need to continue to spread awareness because even doctors don’t fully understand how our disabilities affect us. It is important to talk about breast cancer during the month of October because it takes so many young lives. I am all about talking about the importance of screening for breast cancer and it only bugs me when that is the only disease you hear about during awareness months. Disability affects disabled people in ways that able-bodied people will never understand but the sad reality is that most people never hear of these disabilities because we are too busy focusing on disease. It can be scary to have a child with a disability because the world is not made for us but you can live well with a disability. I hope you learned something new about Spina Bifida and if you feel obliged please share this post with your friends to help new parents with Spina Bifida have some sense of relief that it’s going to be okay. If there is anything else you would like to know about Spina Bifida that I did not cover please leave them in the comments below.
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