Disclaimer: This post was written for informational use only, but I am not a doctor, and it is not a substitute for professional medical advice. Please consult your healthcare team if you have questions about your child’s disability.
It is Spina Bifida Awareness Month! What is Spina Bifida? Spina Bifida is a neurological neural tube birth defect that occurs when the spine does not develop properly. You can have Spina Bifida anywhere on your spine and the further down your spine it is, the more muscles that will be affected. If you are expecting a child with Spina Bifida or any disability it can be scary because we live in a world surrounded by ableism, and there are a lot of unknowns that come with living with a disability. When you get a diagnosis that your unborn child is going to have Spina Bifida a lot of the time, new parents have a lot of questions and wonder if their child will be able to have a normal life. If you are expecting a child with Spina Bifida, it is okay to be a little scared because there is so much disability stigma, and not everyone knows another disabled person to reassure them that everything is going to be okay. What do you need to know about Spina Bifida? In this post, I am going to share a few things that I think every new parent who is expecting a child with Spina Bifida should know so you can spend less time online googling your child’s disability.
You can live well– People often think that disabled people can’t live well because the media portrays disabled people as being depressed and desperate for a cure. If you are expecting a child with Spina Bifida or any disability, I can’t stress enough how important it is to talk to disabled people and get the facts and not listen to things you see on TV shows because if you listen to the movies, it might make you think that disabled people can’t live well. Life is hard when you have a physical disability such as Spina Bifida but because of medical advancements people with Spina Bifida can live long healthy lives. I think that the hardest part of living with an incurable disability isn’t that I struggle with everything I do but it’s that people think that the only way you can live well is if you are fixed and will treat you differently. Teach your child that you can live well with disability and the problem isn’t your disability but it’s ableism.
The new surgeries do not cure Spina Bifida- There are fetal surgeries that expecting moms of a child with Spina Bifida can get, where doctors are able to close a baby’s back while still in the womb. People sometimes think that these surgeries are cures but they are not because Spina Bifida has no cure, and it only eliminates some challenges such as Hydrocephalus, and lessens the likelihood of your child having a physical disability. I think that one day there could be a cure for Spina Bifida, but at this time, it does exist, and we need to stop telling people that these surgeries are cures. People being born today with Spina Bifida have less challenges and it was not an option when I was born but you can still have a physical disability even after having fetal surgery.
Can you prevent Spina Bifida? – If you are thinking about getting pregnant you may wonder if there is anything you can do to completely prevent Spina Bifida. There are some things you can do, such as quitting smoking and drinking, that can lower your risk of having a child with Spina Bifida, but you cannot completely prevent it because the exact cause is unknown. Some people believe that genetics, environmental factors, and not getting enough folic acid in your diet plays a role but we still need to learn more about Spina Bifida to figure out the exact cause. You can be taking all your vitamins while trying to get pregnant and still have a child with Spina Bifida.
There is more than one form– There are three main types of Spina Bifida, which are Meningocele, Myelomeningocele, and Spina Bifida Occulta. Spina Bifida Occulta is the mildest form of Spina Bifida and is known as hidden Spina Bifida because a lot of the time, you don’t even know someone has it. I have Myelomeningocele Spina Bifida, which is the most severe type of Spina Bifida, and most people with this form are full-time wheelchair users, but I have been able to learn how to walk with crutches. If you get a Spina Bifida diagnosis, it can be scary because you might know someone with Spina Bifida who struggles a lot, but I want to remind you that no two people are exactly the same because disability is a wide spectrum and affects everyone differently. I know people with the same form of Spina Bifida as me who have had more surgeries than me and some who have had hardly any. Don’t get scared by my experiences because even if you had the exact same form as me your experience might be completely different from mine. There are technically four types of Spina Bifida, but I only mentioned three of them because those are the most common ones that most people are familiar with.
It is not your fault– Parents who are expecting a disabled child, sometimes beat themselves up and wonder what they did to cause their disability. It is okay to have questions but please don’t beat yourself up over your child’s Spina Bifida diagnosis because unless you knowingly did things such as smoking or drinking while pregnant that you know could cause birth defects it’s not your fault. Spina Bifida can occur in the first three or four weeks of pregnancy before a woman even knows she is pregnant. It is so important that parents do not blame themselves because if you talk negatively about your child’s disability, they will pick up on it whether you say things directly to us or not.
When you are expecting a child with an incurable disability, it can be scary for new parents because you want to do what is best for your child. People with Spina Bifida who have physical disabilities will struggle more than most people but don’t let the term incurable scare you because you can live well with a disability. It is okay to wonder what caused my disability, but disabled people don’t want their parents feeling guilty and we just want someone who will love and accept our differences. I think that the best thing new parents can do for their disabled child is teach them that their disability is not the problem and to get them good medical care. You can’t change your child’s disability but the way you react to it matters because if parents of disabled children can’t accept my differences, then why should I? What do you think new parents should know about Spina Bifida? I hope you learned something about Spina Bifida but if you have any more questions, please leave a comment below and I will do my best to answer.
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