To the Mom Who Just Heard the Doctor Say the Word 'Myelomeningocele'


Hey you!

I see you sitting there, enjoying your annual holiday dinner at work, rubbing your tiny tummy. You just found out this morning that that little bump is the home to a little boy. Two baby boys around the house? What joy! You’re smiling, thinking about the future. It is going to be so fun, so rambunctious, so perfect.

Then you see that you have a message on your phone. It’s from the ob-gyn. She says she’s at a conference but will take your phone call. Heart sinking, head spinning. The message starts with an “I’m sorry,” and is littered with phrases like “myelomeningocele,” “missing brain,” “clubbed feet” and “hole in spine.” What? I see you stumbling to the locker room, dialing the charge nurse on your cell phone, telling her you are leaving. I see you haphazardly strip out of your scrubs to your street clothes, almost missing a shoe. Everything is foggy. Your heart is beating so loudly in your ears. Your vision is doubled. You just have to leave. And you do.

You don’t think you’ll make it home to your husband’s arms, but you will. The short 40-minute drive feels like 40 years, but it’s over soon, and you make it in one piece.

I see you and your husband, Dave, clinging to each other in the hallway of your freshly built house. You feel defeated. That night is sleepless, restless and sad. But you will persevere. You will come to find that spina bifida is just two words. Take a minute to breathe. Come to terms with your new reality, and let’s move on.

Everything will change when you see your son, William, for the first time, and you hear his blessed cry. You’ve just delivered a baby. A baby! It’s not so scary after all! This baby is an incredible gift and a breath of fresh air. He will be the wind in your sails and teach you lessons in flexibility and compassion that you never knew existed. You will learn so much about spina bifida, you’ll be able to talk circles around the physicians charged with Will’s care. You will meet so many incredible people touched by the diagnosis, and all of them will share everything you want to know. It is encouraging to know there are other people who have gone through this, and that life with spina bifida is rich and full. Exuberant. It’s just different from what you’ve grown accustomed to.

mom and baby son smiling for camera

There will be more doctor’s appointments, surgeries, ER trips, MRIs, X-rays, and discussions about cerebral-spinal fluid, and mobility for William than most other children.  You and Dave will talk extensively about the future and begin planning for another move to accommodate Will’s future needs. Sometimes it will be scary, but you’ll just take it in stride; he does! Your family’s future will be fun, rambunctious and perfect. Will will be so easy-going, joyful and loving. And he will bring you such unimaginable joy. His smile will be infectious, his coo music to your ears. And when he and your son, Ben, cuddle up close, your heart will feel like it will burst in two. It won’t, but it will grow two sizes bigger.

Life will be more grand. There’s nothing that can be said now to make you understand, but it will come. Trust me, I’m you. A switch will go off when you see his pudgy face and hear his blessed cry.

Your sweet William will be here soon. He is perfectly made, and he has been waiting for you.

The Mighty is asking its readers the following: If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself? 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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