Children's Program for Kids with Intestinal Failure

David Galloway, MD

Intestinal failure occurs when there is a loss of intestine or the gut doesn't function well enough to absorb nutrients and water, forcing the patient to use an IV for sustenance. This can be heartbreaking when found in infants and children.

Children's of Alabama established an Intestinal Rehabilitation program, caring for kids with intestinal failure, in 2005. Several years ago, the hospital decided to further develop the program and brought in David Galloway, MD who, after internship and residency, had completed a three-year training program for Pediatric Gastroenterology at Cincinnati Children's Hospital with an emphasis on intestinal failure.

The newly re-named UAB Children's of Alabama Center for Advanced Intestinal Rehabilitation uses a team approach to treatment. "Studies have shown when a multi-disciplinary team cares for the kids from the beginning of their malady, they have better outcomes," says David Galloway, MD, who is the Medical Director of the program. In addition to Galloway, the team includes a surgical director, nurse practitioner, social worker, dietician, occupational therapist, pharmacist and a program manager.

While caring for the young patients, the team also works with the families. "Imagine a parent whose child was born without GI problems and the child develops an insult that leaves him without much intestine," Galloway says. "They then have to learn how to connect the child to the feeding pump; to trouble shoot the pump; how to maintain the central venous line; how to monitor inputs and outputs, and medicines.

"Families also have to coordinate care. If these kids develop a fever, they have to be admitted to the hospital for two days because they could get an infection."

Intestinal failure may be the result of a short bowel, dysmotility or mal-absorptive syndromes. There are a number of different causes. In some instances, premature or low birth weight infants contract an infection of the small and/or large intestine (necrotizing enterocolitis) that results in a loss of a portion of the intestinal tract.

Another cause of intestinal failure is gastroschisis, a rare condition that develops during the first trimester, which is characterized by an opening in the anterior abdominal wall through which the intestine protrudes. This requires surgery after birth in which the protruding organs are tucked back into the opening. Unfortunately, gastroschisis is associated with atresia with much of the intestine narrowed or closed. Atresias must be removed with surgery, which results in loss of intestine.

Some circumstances of intestinal failure may strike several years after birth. "There is a condition called Mid-gut volvulus that can cause a child to lose most of their small intestines," Galloway says. "When we're in the womb, our intestines are supposed to protrude from the belly button, make a turn, and then come back to the belly. If the turn isn't complete or isn't done properly, the gut isn't tacked down like it should be. While there may not be any symptoms at birth, at some point during the first three or four years of life, the gut can twist on itself, cutting off its own blood supply which kills the bowel. In this case, a previously healthy child may now depend on IV nutrition to live."

The Intestinal Rehabilitation program team works to help children lessen their time on the IV, or in the best of circumstances, get off IV nutrition completely. "Studies have shown that you need to have at least 15 to 20 percent of your small intestine remaining to come off and stay off IV nutrition," Galloway says.

One of the evidence-based protocols the team uses is nutrition oriented. "We want to help their gut adapt to absorbing calories, minerals and vitamins," Galloway says. "So we'll start slowly. If the child is developed appropriately or old enough to be fed by mouth, we'll try that in addition to the feeding tube. We'll start with breast milk or formula and we'll go with a very small amount either at a continuous rate - we just drip feed into the gut - or we'll let them be given boluses every couple of hours. If we do that slowly, that gives the gut time to adapt and see calories and get used to seeing nutrition. We go up slowly, and then as we do that, we back off the IV nutrition, as we are able.

"95 percent of what we eat, calorie-wise, is absorbed in the small intestine and the main role of the large intestine is to absorb water and electrolytes. We don't understand the adaptation process completely, but we do know that parts of the intestine, small and large - whatever is remaining after the trauma - over a couple of years, can learn to adapt and absorb things that it wasn't meant to initially. That is very helpful when you're trying to get someone off IV nutrition.

"Since 2005, the intestinal rehab program has treated over 300 kids with intestinal failure. Currently, we follow a little over 100 kids in the clinic, but only about 40 are on the IV at any one time. About five of those 40 come off IV nutrition each year. Of the 60 or so who are off the IV, some may be eating everything by mouth while others may be eating partially by mouth and partially on tube feeds. These patients still need to be followed closely to make sure growth occurs appropriately and labs remain stable."

The group has a satellite clinic in Dothan and is considering establishing a Huntsville practice. "We want to reach out to more people," Galloway says, "because there are NICUs all over the state that have babies with these conditions without access to a multi-disciplinary team."


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