Teddy has been in and out of the hospital since birth. He was born with Hirschsprung’s disease, a rare disorder that renders the bowels unable to move, which led to the removal of his entire large intestine and part of his small bowel. He also had congenital central hypoventilation syndrome, which requires him to be on a ventilator while sleeping. For a long time, he could not receive any nutrients or fluids by mouth, so doctors had to put a feeding tube into his abdomen and an intravenous line into his chest.
When Teddy was 4, the gastrointestinal doctors at Children’s of Alabama, near his home outside of Birmingham, told his family they had only seen one or two cases like Teddy’s and had reached the limit of their experience to deliver care. They referred him 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. By this time, Teddy had undergone 19 surgeries, including a tracheostomy, placement of a cardiac pacemaker and numerous intestinal surgeries.
Teddy was admitted to Children’s for advanced motility testing of his small bowel. Because of his complex respiratory condition, he had to be managed in the Pediatric Intensive Care Unit (PICU) by the motility team. He underwent a protocol through which doctors were able to map out the motility of the remaining bowel centimeter by centimeter, only to find out that it worked better than expected. Dr. Garza developed a plan to wean off the intravenous nutrition and start advancing liquid nutrition in the gut as well as prescribe some medications that would help his difficulties with feeding.
Today, Teddy can take all of his nutrition through his feeding tube—nothing is going through his I.V.—and he is even trying some food by mouth. He sees Dr. Garza and the motility team every three months so they can monitor his growth and progress and make any necessary changes to his treatment plan.
A big milestone came last year when Teddy started 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,” his mom, Anna, said.
Not only is he in school, but he can also now go outside and play with his two older siblings without worrying about an I.V. pump being in the way. His risk of infection is greatly reduced, he feels stronger and better, and he’s in the hospital significantly less often than he was before.
“It was daunting to say the least; the fact that he’s relieved of his I.V. nutrition bag was a game-changer,” Anna said.