There are fewer than 10 intestinal rehabilitation and transplant programs for adults and children in the United States. If you narrow that to programs that just deal with children, you’ll find only three.
One of these is the Children’s Mercy Pediatric Intestinal Rehabilitation Center headed by pediatric gastroenterologist Joel Lim, MD, and pediatric surgeon Richard Hendrickson, MD.
The group treats children whose intestines were cut or didn’t work at birth. Short bowel syndrome patients range from preemies to age 18. The program began about nine months ago and Dr. Lim says he expects to gain about 30 new patients each year.
The rare, and complex, disease affects approximately six children per 100,000, Dr. Lim says. The population he deals with predominantly is children whose bowels don’t accept food. These children are fed total parenteral nutrition (TPN).
Rehabilitation is important for children with short bowel syndrome. The goal is to get children off of TPN – which can lead to line infections and can harm the liver.
Because of the complexity of the condition, the rehabilitation team is comprised of various specialists including a dietitian, nurse practitioner and coordinator, pharmacist, social worker and surgeon. They also work closely with specialists from the liver program when patients have liver issues from TPN.
During rehab, children try various formulas to see if they improve. They are also provided medications that enhance absorption of food in the small intestines. If these don’t work, surgery may be performed to lengthen the bowels.
If all of these treatments are ineffective, they have to consider transplantation. The transplantation program will be up and running within the next 12 months. But Dr. Lim says the goal of the program is to eventually avoid sending children for surgery whenever possible.
“We are trying to rehabilitate the bowel so children don’t need vein feeding and their bowel will start working again,” he says. “What we are trying to do is to rehabilitate and hope we aren’t going to transplant them. When we send them for transplants, we have tried everything and that is his or her only option.”