To the Expectant Parents Who Just Received a Spina Bifida Diagnosis


If you’re reading this, you may be pregnant with a little one diagnosed with spina bifida, and you’re slightly freaking out right now. Also like me, you probably googled spina bifida — against everyone’s advice to stay off of the computer — and happened upon this story. And maybe, just perhaps, you are still on the fence about whether or not a child with special needs is something you are capable of handling. I am here to reassure you that every child and person with spina bifida has had parents who stand exactly where you are today. We all probably freaked out, cried and doubted our capabilities, but we got over our fears and became a stronger parent for it. You can do this, too.

The greatest advice I ever received when I was pregnant with my twins (Jake and Lucy) — and Lord knows I got a lot of advice — was that one day I would wake up and spina bifida wouldn’t be such a big deal. Back then, I remember thinking the Children’s Hospital of Philadelphia nurse who told me that was crazy. And then one day it happened: I ran out of diapers. Keep in mind I now had three babies under 3 years old and we go through a lot of diapers! I thought, Oh crap! We are out of diapers. I have to run to the store! I never thought, Oh crap! One of my children has spina bifida and now we are out of diapers! or Oh crap! Jake has spina bifida, how can I go to the store? It was just the simple realization that life was going on anyway, regardless of Jake’s spina bifida. I was still going to run out diapers, I was still going to have to make dinner, I was still going to sing silly songs to my kids and play dress up. Most importantly, I realized I was still a mom — and those babies needed me to be the best mother I could be.

I always said if I could have met my Jakers when I was pregnant with him, I would have never cried a single second over his diagnosis. So he has some issues — his temper tantrum-screaming all-the-time-hides-food-in-her-toy-box twin sister is on track to have plenty, too. To know him is to love him. His smile, his crystal-blue eyes, his belly laugh, his ridiculous Shaun Cassidy-esque hair — he is completely perfect in every way. Sure, his feet are a bit funky and he constantly has a stinky diaper, but I wouldn’t  change a thing about my lovable son… well, other than his ability to fight off a sleep like it’s his job.

So Mama or Daddy, if you’re reading this and wondering how in the world life is going to go on, or how can this happen to you, I am here to tell you this: you can do this. You can do this. We can do this. Our story was written with spina bifida. Your story may be something else — cerebral palsy, or autism or any of the thousands of diagnoses that make our babies wonderfully special. We are all looking for the same result: to exit that hospital with a happy, bundle of joy in our arms to call our own.

So get up, strap on your big-girl (or big-boy) pants and get ready! Because this baby — your baby — isn’t going to take any mercy on you. He or she will be here in no time, and your heart will be stolen the second you meet. And shortly after, you might be wondering what the heck you were so worried about. Just don’t forget to buy plenty of diapers!

A version of this post originally appeared on The Journey: Redefining Spina Bifida.

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