When My Son Asked 'Why Did I Get Spina Bifida?'


Last week my son came up to me and snuggled up on the couch to cuddle. Usually when he does something like that, it means that he’s done something wrong and is trying to be cute to keep out of trouble, or he wants something. Bracing myself, I asked him point-blank what he wanted.

“Mom,” he asked shyly, “why did I get spina bifida?”

Kiersten's son -- a boy in a blue shirt with backpack

Cue my heart stopping. When he was younger, we had explained why he had to go to his yearly neurosurgeon appointments as an extra check-up from a surgery he had as a baby. He knows he was born with spina bifida, and that as a result he has a scar on his back and a trip to Albany every year to see how he’s growing. He’s a smart kid, precocious in some ways, and knows that health problems often have a cause.

Stalling, I asked him why he wanted to know. “Because no one in my class has it. And Sissy doesn’t either. I’m the only one. How did that happen?”

How do you explain to a 7-year-old child that your body’s inability to absorb nutrients well means that he didn’t get the folic acid he needed while in utero? How do you explain the guilt you still feel because he ended up having something that made him different from his classmates, something that cannot be hidden or changed, and that will follow him the rest of his life? How do you explain why his sister doesn’t have the same condition, even though they have the same sacral dimple, because his diagnosis made it so you knew to take extra folic acid so that she wouldn’t have it, too? We’re a family of skeptics, and secular humanists to boot. Trying to explain the science behind it all, no matter how smart he was, would be a monumental task.

“Buddy,” I said, hoping for the words, “You know how Mommy had you in her tummy before you were born, right? And how babies get their food in mommy’s womb while growing?”

“Yeah, through the ‘bilical cord’.”

“Well, even if the mommy eats all the right foods and takes her vitamins, some mommies have a hard time getting the right amount of vitamins in their body to help their baby grow up healthy. That’s what happened when you were in Mommy. I tried everything I could, and while you weren’t as sick as some babies, you ended up having it.”

“Oh,” he replied. He seemed to get it, then asked a follow up question. “How come Sissy didn’t get it?”

Deep breath in, Mom. “Well, because we learned from you and what happened while you were in Mommy’s tummy. We knew that when Sissy was in Mommy’s tummy that I would have to take extra medicine to make sure she didn’t have it too. So in a way, you were being a great big brother even before she came along.”

“Oh. OK, Mom. Can we play with the rubber stamps now?”

The Mighty is asking the following: How would you describe disability, disease or mental illness to a child? If you’ve done this before, tell us about that moment and the child’s reaction. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.


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