Beyond Esophageal Atresia: Marcus’ Story

Minutes after Marcus was placed in his mother’s arms for the first time, the nurses gently lifted him away again. They’d heard something alarming in his cry. An X-ray confirmed it: esophageal atresia, a problem with the connection between his esophagus and stomach. He’d just been born, and he needed intensive care.

“I was in shock,” says mom Natalia. She spent the entire next day in just holding her son, learning his face, careful not to jostle the tubes and wires connected to him.

She also met pediatric surgeon J. Leslie Knod, MD.

Connecticut Children’s is leading care that was once beyond imagination for kids like Marcus, from a dedicated Esophageal Atresia Program to research into new treatments. That day in the NICU, Dr. Knod explained all of it, including the surgery Marcus needed first…

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Even through her daze, Natalia registered Dr. Knod’s sincerity. “You can just tell she cares,” says Natalia. “You can tell she’s a mom.”

“This is a very difficult thing for any family to go through, but you’re not carrying this weight alone,” Dr. Knod told Natalia. “We have a great team, and we’ll be with you, side by side. We’ve got this.”

How common is esophageal atresia?

About 1 in 4,000 babies is born with esophageal atresia. Marcus has the most common type: Instead of one long tube connecting to his stomach, his esophagus was separated into two pieces. The lower piece fed into his windpipe, an issue called tracheoesophageal fistula. Altogether, this meant food couldn’t reach his stomach like he needed, but stomach fluids might pass back up into his lungs and cause breathing problems.

The surgery with Dr. Knod repaired and rearranged these connections, which saved Marcus’ life. But it was just the beginning of his care.

Esophageal atresia is a lifelong condition, often requiring many specialists. So, Connecticut Children’s created a multidisciplinary program called the Esophageal Atresia Collaborative. It connects kids like Marcus with every expert they need today — and every expert they might need tomorrow.

Can a child eat with esophageal atresia? 

Now at 3 years old, Marcus sometimes has difficulty swallowing solid foods. So his team includes gastroenterologist Corey Baker, MD, an expert in digestive motility. In the years to come, if he ever needs a pulmonologist, an ENT expert, or a speech-language pathologist, they’re at the ready. He’ll likely see everyone during the same visit, and they’ll always work together on his care plan.

“I love everyone at Connecticut Children’s, and I’m grateful to have all of them checking on Marcus. It makes me feel so at peace, knowing they have everything under control,” says Natalia.

Leading-edge pediatric esophageal atresia research in Connecticut

That’s not all. Besides going above and beyond for its own patients, Connecticut Children’s is known for national research that will improve care and treatment for patients everywhere. Connecticut Children’s is currently leading two studies to inform best practices for esophageal atresia care. Another research team, led by Surgeon-in-Chief Christine Finck, MD, is developing a bioengineered, personalized implant that may someday be able to replace missing segments of a child’s esophagus. It offers new hope for kids with this condition.

“There is a tremendous unmet medical need for children suffering with esophageal atresia in the United States and across the world. This technology has the potential to dramatically improve their care and condition,” says Dr. Finck.

With the right esophageal atresia care, nothing is beyond imagination 

When Marcus was 1 year old, Dr. Knod performed a follow-up procedure to expand his esophagus a bit more, using a balloon to stretch the opening. He was in and out the same day.

Ever since, he’s been thriving. At 3 years old, he’s outgoing and talkative — always delighted to be the center of attention, telling stories and making new friends. His teachers have declared his vocabulary “immaculate.” He recently had his annual visit with the Neonatal Neurodevelopmental Follow-up Program, and passed with flying colors.

“He’s so cute and thriving. I look forward to whenever I get to see him,” says Dr. Knod. “He’s smiling. He’s happy. He’s interacting. It’s a joy to watch him grow.”

And he’s only just begun.

It’s a good reminder for every other baby born with esophageal atresia, and their families: With the right care, nothing is beyond imagination.

“I look at Marcus every single day and think, Wow. I can’t believe we’ve come this far,” says Natalia. “I want other moms to know they have nothing to worry about. Their child is in great hands. Anything they need, Connecticut Children’s will be there for them.”

 

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