Tysen Zeller of Lexington, Mo., is already about a month past his first birthday and he’s barely had any experience tasting food.
That’s because two weeks after he was born, his intestines started to die. It’s a complication that can afflict preemies like Tysen.
Two surgeries removed most of his intestines. And since then, he’s been getting his nutrition from a feeding tube running through his nose to his stomach and from regular intravenous supplements.
Tysen is one of about 45 young patients under the care of Children’s Mercy Hospital’s new intestinal rehabilitation center. Children’s Mercy is one of only about a half-dozen hospitals nationwide with specialized programs for these relatively rare childhood conditions that require special feedings.
Later this year, Children’s Mercy plans to become just the third medical center in the nation to provide bowel transplants to children. The others are in Cincinnati and Pittsburgh.
Even with that option readily available, it will remain a last resort for his patients, said Joel Lim, the gastroenterologist who directs the rehabilitation center.
“These kids are very complicated medically. But there are so many things we can do for them now,” Lim said. For Tysen, “the goal is to make his gut work to have him eating steak.”
Steak may be the goal. But it’s only been in the past month or so that Tysen’s parents, Lucas and Megan, have even dared to give him tablespoon doses of bananas or oatmeal.
Tysen was born at 30 weeks; an identical twin brother died in the womb. At first, Tysen was a healthy preemie. Megan Zeller recalls she was driving home from the hospital after spending a day with Tysen when she received a terrible call.
Tysen’s belly was distended. There was blood in his stool. X-rays showed an intestinal rupture. Tysen had necrotizing enterocolitis.
It’s a condition that can be as bad as the words sound.
“His bowel tissues were dying. They don’t know why this happens,” Zeller said. “But it happened really fast. He was 15 days old, and he was fine.”
Surgeons removed much of Tysen’s small intestine, the organ that absorbs most of the nutrients from food. They also left just a small piece at the end of his large intestine. With his two bowels disconnected, Tysen was fitted with a baby-size ostomy bag for eliminating waste.
Tysen was left without enough of his small intestine to get his nutrition from food. That makes feeding a 24/7 proposition for his parents.
The tube in his nose provides him a slow, constant supply of a special formula mixed with his mother’s breast milk. She set aside an entire freezerful soon after he was born.
The food tube runs to a backpack outfitted with a small pump. Every four hours they have to refill its reservoir with formula. Several nights a week, they give Tysen additional intravenous feedings with essential nutrients, called total parenteral nutrition, or TPN, through a catheter in his chest.
Lim said his Children’s Mercy clinic sees children who all need special feedings because their bowels have malfunctioned for different reasons. Some children were born with intestines that cannot absorb nutrients adequately. Others have malformed bowels; portions may have been removed surgically, causing the same kind of short-bowel syndrome Tysen has.
Transplants for these children would only be considered if TPN feedings become a liability, Lim said. Intravenous lines can become infected. Long-term use can lead to liver failure. Over time, it may become hard to find suitable veins to accommodate the IV lines.
Tysen is doing so well, he may be able to stop TPN feedings in a few more weeks, Lim said. He now meets almost all his nutritional needs with just eight inches of small intestine.
“That’s awesome,” Lim said. Normally, a child Tysen’s age has a gut 40 inches or longer.
As Tysen grows and his small intestine lengthens, Lim expects surgeons will be able to reconnect his small and large intestines. Tysen would be able to eat normally and no longer need an ostomy bag. But that surgery is likely three or four years away.
“He was left with so little, it will take a while,” Lim said.