Esophageal Atresia, Two Years Later: Jon’s Check-Up and Why We’re So Thankful

Two years ago, esophageal atresia had our son Jonathan in a hospital bed at Johns Hopkins All Children’s, recovering from two major surgeries to rebuild his esophagus. This week we drove back to St. Petersburg for his two-year check-up, and my heart could not have been more full. The same boy who once had tubes running in every direction was sitting beside me on the drive home, playing air drums to the radio without a single care in the world. Healthy, happy, and so completely himself. God is so good, and I am just so thankful.

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Watch the full video above — or keep reading below.

If you’ve followed our family for a while, you know Jonathan’s road has been a long one. He was born with long-gap esophageal atresia — which is a fancy way of saying he came into this world without a connected esophagus. The tube that’s supposed to carry food from the mouth to the stomach simply wasn’t joined together. When he was about six weeks old, he had his first major surgery to reattach it. That held for years — though we’ve spent more time in this hospital than I could ever count, including more than one holiday — until a couple of years ago, when we got the news that it had closed over and wasn’t allowing anything through.

That’s when we were connected with the Esophageal and Airway Treatment team at Johns Hopkins All Children’s, led by Dr. Smithers — a group that performs some of the hardest esophageal atresia surgeries in the country. They did what’s called a supercharged jejunal interposition, where they bring up a section of the intestine and use it to bridge what’s left of the esophagus. They opened Jonathan from his collarbone all the way down past his belly button and rebuilt everything. He spent twenty-eight days in that hospital. Twenty-eight days.

So when I tell you that walking back into that building two years later for a routine check-up felt like a gift, I mean it. The team looked him over, ran their tests, and gave us the news every parent of an esophageal atresia kiddo prays for: he’s doing great, growing, thriving. We have spent so many years holding our breath in a hospital — and this time, we got to walk out smiling.

Two Years After Jon’s Esophageal Atresia Surgeries

There’s a particular kind of gratitude that comes from sitting in the same hospital where your child once fought to recover and, this time, hearing good news. Esophageal atresia has been part of our family’s story since the day Jonathan was born, and it has taught us to celebrate every ordinary day — the check-ups that come back fine, the meals he can eat, the boy who climbs in the car and drums along to the radio like he hasn’t got a worry in the world.

That drive home is the part I keep replaying. Jon in the front seat, air-drumming to the music, completely free. Two years out from two major surgeries, and that’s the picture I get to keep.

Esophageal Atresia FAQ — The Questions We Get About Jon

What is esophageal atresia?

Esophageal atresia is a rare condition a baby is born with, where the esophagus — the tube that carries food from the mouth to the stomach — doesn’t form all the way, so the two ends don’t connect. In Jonathan’s case it was long-gap, meaning the distance between the ends was especially wide, which makes the repair much harder. I’m not a doctor, just a mom who has lived it, so for the real medical explanation I always point people to the team that treated Jon.

What surgery did Jonathan have?

His most recent one was a supercharged jejunal interposition. In plain terms, the surgeons borrowed a section of his intestine and used it to bridge the gap where his esophagus couldn’t connect on its own. It’s a big, complicated operation, and the team at Johns Hopkins All Children’s are some of the few in the country who do it.

Does Jonathan have Down syndrome?

He does. Jonathan has Down syndrome, and he is one of the brightest lights in our whole family — funny, stubborn in the best way, and absolutely full of joy. His diagnosis has never been the headline of who he is. The kid air-drumming in the car? That’s the headline.

How is Jonathan doing now?

He’s thriving. Two years out from his surgeries, he’s growing and living his life — Buddy Baseball, school, and holding the family cat hostage in the kitchen, all of it. His two-year check-up confirmed exactly what we hoped: he’s doing wonderfully.

Where can I follow Jonathan’s story?

We share Jonathan’s journey here on the blog and across our social channels, because his story has encouraged so many families walking a similar road. You can read more of his moments below, and if you’d like them in your inbox, my Saturday newsletter is the easiest way to follow along.

More Jonathan Moments You’ll Love

• Jonathan Was Fighting for His Life While the Roof Came Off Tropicana Field — the full-circle day that connected Jon’s surgery to the stadium next door.
• Jon’s Adoption Story — Down Syndrome, Big Surgery, and the Baby Who Changed Everything — where Jonathan’s story with our family began.
• Jonathan Ends the Buddy Baseball Season With a Home Run — Jon doing what he loves, finishing the season big.

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Esophageal Atresia — About Stephanie Longstreth

Stephanie Longstreth is the home cook, mom, and storyteller behind StephanieCooksForACrowd.com. She cooks for a family of seven in Florida — five kids, two cats, and one husband who appreciates a good meal. Four of her children came home through adoption, and family stories are woven into everything she makes and shares. Find her crowd-friendly recipes, weekly meal plans, and real family life on TikTok, Instagram, YouTube, and Pinterest @stephaniecooksforacrowd.