I’m just going to say it:
Finding out that your child has spina bifida is super crappy.
That’s an understatement, actually. It’s scary and awful and confusing and painful and the all-around pits.
Not because people with spina bifida are scary (they aren’t– unless it’s Halloween and maybe they’re in a goblin costume or something) and not because the diagnosis means a life of constant pain and suffering (it doesn’t– unless you ask my three-year-old to tell you about how I won’t let him drive the car). No. It sucks 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. Words like “hydrocephalus” and “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 your energy to focus on not tossing your cookies.
Then, your doctor might say some words that 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 Redbull and steroids and whatever was in the “drink me” bottle that made Alice ten stories high. Severe is really scary stuff.
So, let’s talk about “severe.”
There are actually four types of spina bifida. The first type (spina bifida occulta) is so mild that many people don’t even know they have it. The second and third types (closed neural tube defects and meningocele) might not show up on an ultrasound screening, often have little to no symptoms, and can be managed with surgery. And then there is the fourth type, the severe type: myelomeningocele.
If you’ve just found out that your unborn baby has Spina Bifida, it’s probably the severe type. The hairy-scary-ooga-booga type. The big kahuna.
But what does that look like?
To begin, here’s what it doesn’t look like:
That’s a relief. Yikes.
Mustaches aside, it also does NOT look like any of these:
- Severe intellectual disabilities
- Severe brain damage
- High childhood mortality rate
These are common misconceptions about people born with myelomeningocele. Unfortunately, they are misconceptions that many doctors– especially OBs, who have little experience with SB– still believe.
If your 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), there’s a big chance that he or she is wrong. I’m serious. Your doctor might be wrong. Not because they’re bad or because they’re liars, but because they honestly don’t know any better. They are ignorant about SB.
But you don’t have to be.
Want to know what the most severe form of Spina Bifida looks like?
It looks like this:
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 that 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 that people with this type of Spina Bifida do not 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 is not always easy. But you need to know that 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