Ciarlo’s Story: Spina Bifida

Kira was 19 weeks pregnant when she and her husband Ken learned that their son, Ciarlo, had spina bifida. Their doctor sent them to The Children’s Hospital of Philadelphia, where Ciarlo had surgery to repair the hole in his spine the day after he was born in the Hospital’s Special Delivery Unit.

Today, Ciarlo is an intelligent, friendly preschooler who continues to be followed by CHOP’s Spina Bifida Program, where a multidisciplinary team of specialists works together to provide the care he needs. Read more about Ciarlo's journey.

Kira walked through the doors of The Children’s Hospital of Philadelphia when she was 19 weeks pregnant with Ciarlo. Look at him now.

 

Transcript

Ciarlo's Spina Bifida Story: Look at Him Now

Kira: We found out that I was pregnant on the day that we settled on my mom's house.

Ken: It was instantly exciting.

Kira: But in the back of my head, the whole time I was pregnant, I always had the fear of something being wrong. We went into the 19 week ultrasound. I could kind of see that something didn't look right because the spine looked funny. We knew it wasn't good news. I got in the car bawling my eyes out. Spina Bifida basically means open spine. It pulls the whole entire brain stem down.

Ken: They call it the snowflake disability.

Kira: Yeah.

Ken: Meaning every single kid with it is different.

Kira: Our OB didn't sugarcoat it. He said “It's going to be difficult.” But he was so full of hope, and promise for us, and told us to come to CHOP. All the people in the fetal center just became part of our family. They're with you at the hardest part of your life. They just did anything and everything they could do to make you feel comfortable.

The special delivery unit at CHOP is basically like the Ritz Carlton of birthing centers. It is beautiful. If your baby needs emergency surgery there's an operating room right there. And the best part about it is you're in the same building as your baby.

When he came out he was screaming bloody murder. Which I was like “Well, that's good.” He's a fighter already.

Ken: I mean it was beautiful. You know? Because he was over there screaming. The doctors were visibly happy with him. They actually high fived each other. You know? To hear him crying. It was just a real relief.

Kira: I got to just hold his little hand. And that was the moment I fell in love with him because I didn’t let myself fall in love with him because I wasn't positive that he would make it. And I just - the second that I saw him he had my heart.

He was taken right to the NICU and then the next morning he had his back closure. He's paralyzed from about here down. As far as we know.

Ciarlo has a lot of energy. He doesn't ever stop talking. He's really, really exceptionally smart.

Ciarlo: My mom doesn't never wants to right.

Kira: I never want to what?

Ciarlo: Cook pancakes.

Kira: I cook pancakes all the time for you.

Ciarlo: But I wanted to help.

Kira: Okay. Next time I do it you can help. Okay? Deal?

Ciarlo: Yeah.

Kira: Okay.

Ciarlo: But if you don't let me then my thumb goes down.

Kira: He is almost always smiling. He's one of the happiest kids that you'll ever meet. He just has something about him. You just see a light shining from him. Thank you. I expect him to do great things. He just — he might have to go about it in a different way than others but he's going to do great things.

I walked through the doors of CHOP when I was 19 weeks pregnant with Ciarlo.

Ciarlo: And look at me now!

Topics Covered: Spina Bifida Causes, Symptoms and Treatment

Related Centers and Programs: The Center for Fetal Diagnosis and Treatment Celebrates 20 Years, Center for Fetal Diagnosis and Treatment, Spina Bifida Program