First things first: I know this sucks. You had plans for your child, plans for a wonderful future, and this diagnosis will maybe change that future to something unknown and scary. You are scared. But you are also not alone. My parents went through the same thing you are going through. In some ways it was worse for them since I was born pre internet, so they had to do lots of research on their own. There was no google search. There was also no way to know something was wrong until after I was born, although my mom tells me she had a feeling something was wrong, she just didn’t know what. They call it mother’s intuition for a reason. Since you were able to learn of this diagnosis before your child was born, use that to your advantage to prepare yourself as much as you can.
As part of your research and preparation, get involved with spina bifida support groups. These groups exist to assist families with the myriad of issues that arise when your child is diagnosed with spina bifida. Seek out early intervention support as soon as you can, as early intervention therapy is crucial in helping your child live as normal a life as possible.
I know you must be thinking, “it’s my fault.” Even if you eat all the right things, take enough folic acid, keep yourself as healthy as you can, this can happen. It’s not your fault. This diagnosis does NOT make you a bad parent. If you have to stand in front of a mirror and repeat this mantra everyday, do it.
There is a bit of good news, however. Doctors are now able, in most cases, to repair the spina bifida lesion in utero. Babies that are born after this surgery have a lesser need for shunts and an increased chance of walking. But if, for whatever reason, surgery is not an option, please don’t despair.
When I was born, there were many unknowns. The doctors told my parents I may never walk. I may never talk. I may not even live through that first night. As you’ve probably figured out by now, I’ve been in the business of proving Dr.’s wrong for a long time now. Sometimes doctors are only able to speculate.
Adjust your expectations. In a child with special needs, expecting them to meet standard developmental markers in a certain time frame can be frustrating if these markers are not met. For example, the average age for a child’s first steps is 12-18 months. I took my first steps at 3 years old. Celebrate these milestones as you would for a non disabled child.
I know you are scared. You may even be considering termination out of fear that your child will suffer with this diagnosis. Please don’t. Trust me when I say a child born with a disability knows nothing else. They don’t see their life as suffering. Yes, there will be bad days, days when they look around and see their non disabled friends doing things they can’t or things that don’t come as easy to them. Let them experience this, and be a support to them when they need an ear to listen, or a shoulder to cry on. But in a way, doesn’t every child experience this? Pray daily for your child. For the Lord to grant them extra confidence to get all they can out of life. To try new things and explore. To be a kid.
You can do this. It’ll be a challenge, but I promise you have what it takes to make it through. We do too.
I hope you found this encouraging if you are indeed expecting a child with spina bifida. Please pass this along to anyone you think needs to read these words.
ALWAYS remember you are NEVER alone.
I’d like to thank my mom, Roxanna, for helping me write this through a parents perspective. Thanks for helping me become the woman I am today. I love you ♥