Faced With Hirschsprung Disease, Teddy Makes Steady Process

After 19 surgeries, Teddy arrived at Children’s Healthcare of Atlanta for help battling Hirschsprung disease and other conditions that made his life challenging. His care team helped him attend school without the worry of an I.V.

Teddy had a tracheostomy, had a cardiac pacemaker installed and had received numerous intestinal surgeries—including the total removal of his large intestine.

He needed a ventilator to sleep. And for a long time, Teddy wasn’t able to receive nutrients or fluids orally, so doctors would put a feeding tube into his abdomen and an intravenous line into his chest.

A constellation of conditions

Since his birth, Teddy has been in and out of the hospital. Born with Hirschsprung disease—a rare disorder that renders the bowels unable to move—he has dealt with a startling array of challenges.

When Teddy was 4, the GI team at Children’s of Alabama—near his home outside of Birmingham, Ala.—told his family that they had only ever seen a handful of cases like his. At the limits of their experience, they referred the family to Children’s Healthcare of Atlanta.

Teddy’s first appointment at Children’s was with Jose Garza, MD, Medical Director of the Neurogastroenterology and Motility Program.

Due to Teddy’s congenital central hypoventilation syndrome, his treatment had to be carried out in the Pediatric Intensive Care Unit (PICU) by the motility team. There, his care team mapped out the motility of his remaining bowel, centimeter by centimeter.

A glimmer of hope

Fortunately, what they found was encouraging. Dr. Garza planned to reduce Teddy’s reliance on intravenous nutrition and introduce liquid nutrition in the gut, along with some accompanying medications.

Today, Teddy’s able to get all of his nutrition through his feeding tube. Occasionally, he’s even able to try some foods orally. Every three months, he meets with Dr. Garza and the motility team to monitor his progress.

Teddy reached a major milestone when he started attending school. “It was huge for him to be able to go to school without worrying about him getting the nutrition or food that he needs,” says Anna, his mother.

Thanks to the team at Children’s, Teddy’s able to play outside without worrying about an I.V. pump. With a lower risk for infection, he’s feeling stronger than ever. And he’s been making far fewer hospital trips.