What the Most Severe Form of Spina Bifida Looks Like to Me


I’m just going to say it: Finding out your child has spina bifida (SB) can be confusing, painful and scary.

It’s not because people with spina bifida are scary (they aren’t, unless it’s Halloween and maybe they’re in a goblin costume). And it’s not because the diagnosis means a life of constant pain and suffering (it doesn’t, unless you ask my 3-year-old to tell you about how I won’t let him drive the car). No, it can be scary because when you find out your child has SB, you probably don’t really know what that means, but you know it’s not what you signed up for.

To make matters worse, when you find out that your child has spina bifida, your doctor will start plowing through a list of words you’ve never heard before like hydrocephalus, meninges and chiari. Words they’ll rattle off while you lie there, belly covered in goo, trying to remember how to breathe. You may feel like you’re listening to a lecture on metaphysics or rocket science. You may zone out completely because all you can think is, “Nope. No thank you. Not it. Nope.” If you’re like me, you may stare at the wall and use all of your energy to focus on not tossing your cookies.

Then your doctor might say some words you actually have heard before. That’s a relief, right? Wrong. Because one of those words is going to freak you the heck out.

That word is “severe.”

As in “Your baby has a severe form of spina bifida.”

Or “Your baby has the most severe type of spina bifida.”

Ouch. I know. It’s awful. I’ve been there and I get it. Severe is, like, worse than bad. Severe is bad intensified. Severe is bad hyped up on Red Bull and steroids and whatever was in the bottle labeled “Drink Me” that made Alice 10 stories high. Severe is really scary stuff.

So let’s talk about severe.

There are actually different types of spina bifida. One type called spina bifida occulta is so mild that about “15 percent of healthy people have it and do not know it,” according to the Spina Bifida Association. And then there’s the severe type: myelomeningocele.

If you’ve just found out that your unborn baby has spina bifida, it might be the severe type.

But what does it look like?

To begin, here’s what it doesn’t look like:

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That’s a relief. Yikes.

Mustaches aside, it also might not look like any of these:

These are common misconceptions about people born with myelomeningocele. Unfortunately, they are misconceptions that some doctors who have little experience with SB might still believe.

If a doctor tells you any of these things — that your child will have severe brain damage, will have no quality of life or might not survive birth, etc. — he or she could be wrong. I’m serious. Your doctor might be wrong. Not because they’re bad or because they’re liars, but because they honestly might not know any better or are ignorant about SB.

But you don’t have to be.

Want to know what the most severe form of spina bifida looks like to me?

It looks like this:

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All of these people have myelomeningocele, the most severe form of spina bifida. All of their mothers sat where you are sitting today. Many of them were told their child would have no quality of life, would live with severe brain damage or might not survive infancy.

It would be dishonest to say people with this type of spina bifida don’t face physical and societal challenges. They have medical needs that are outside the norm. They will have surgeries. They will probably need leg braces or a wheelchair. It’s not always easy. But you need to know the majority of babies with the most severe type of spina bifida are born healthy and strong (my son had the Apgar score of a tiny Olympian). They grow up. They lead happy lives. They go to school. They can have fulfilling careers. Their lives have value.

Everyone’s life has value.

Don’t let severe scare you away.

Follow this journey on What Do You Do, Dear?


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