Inside Pediatrics Summer 2019

dietitians, nurses and nurse practitioners, social workers, program managers and therapists to help teach feeding skills. It’s a complex issue that can require years of rehabilitation and therapy.” “The most common condition we treat is necrotizing enterocolitis, followed by gastroschisis,” said Colin Martin, M.D., the program’s surgical director. “Others are intestinal volvulus and intestinal pseudo-obstruction.” The clinic manages approximately 150 children with intestinal failure ranging in age from infancy to 16 years old. In many ways, the multidisciplinary team provides care for the entire family. “Family is crucial,” Galloway said. “If you have two kids with the same diagnosis and anatomy, and one family is unstable and having hard times economically and the other family doesn’t have those problems, we see a big difference in outcomes. Families are part of the multidisciplinary team. While families don’t get to control many of the social determinants of health, those who are engaged, willing to learn and are detail- oriented are the ones who do the best.” As a result, the caregivers meet with parents early and often. They ask many questions to understand family dynamics and engage families at the highest possible level. “If you ignore the challenges, if you just assume the family has a car or can afford to come to Birmingham to be seen or can pay for the supplies, you are ignoring the needs of that family,” Galloway said. “So we try not to make assumptions, and we ask them what we can do to help overcome the challenges.” “Our Birmingham population is unique,” added Martin. “We face challenges of household education, access to care and poverty that many similar centers don’t have. Health literacy and the ability of families to understand and translate that understanding into quality care are all critical in terms of outcome.” Ultimately, the outcome the program strives for is complete enteral autonomy. “That means you can live and sustain your life without the need for the IV nutrition,” Galloway said. “We also want to reduce the number of line infections. We want normal development and growth without vitamin and mineral deficiencies. We track all those outcomes.” And they compare those outcomes to other centers around the country. “We are better at some things than those institutions, and in others, we are not,” Galloway said. “But we are working on those, and we are always getting better.” There are surgical options for some of the children the program serves. “A lot of our patients require surgery early in life,” Martin said. “In that initial operation, we are very careful to limit the amount of intestine we remove. Going forward, there are surgical techniques to lengthen the intestine. One is the serial transverse enteroplasty procedure, or STEP. Over the past five years, we’ve done about 15 STEP procedures, and we’ve had some good outcomes with that. Another surgical management these kids often need is management of their central line, the device that delivers their IV nutrition. We try to minimize having to remove and replace that line. We take line infection very seriously and have improved those outcomes over the past several years.”

Transplant is another surgical option. “Some of these kids, despite our best efforts, are not able to come off IV nutrition,” Martin said. “If they have complications, such as repeated line infections or liver failure or septic events, they are evaluated by an intestinal transplant center. We send our patients to Nebraska or Cincinnati for evaluation, and several have had small bowel or intestinal transplant, or sometimes a liver transplant at the same time. These children are on lifelong immunosuppression. We also help manage children in our region who have undergone these transplants.” The program often treats patients who have contracted typical childhood illnesses. “Children with short bowel syndrome who get a stomach bug causing nausea and diarrhea can be sicker longer than a child with a normal bowel,” Galloway said. “It puts them at risk to come to the hospital for IV fluids and support.

“We really stress flu vaccinations for that reason,” Galloway continued. “That’s an illness that can affect all of us, but these kids can have it for an even longer period of time.” Even when patients achieve the ultimate outcome of enteral autonomy, the program continues to follow them for months or even years. “They are still at risk for certain vitamin and mineral deficiencies, and we still have to watch their growth. Just because they come off IV nutrition doesn’t mean they are eating really well by mouth. They may still be dependent on tube feeding. We want to know for sure they are continuing to grow and do well,” Galloway said. “There are a number of conditions out there that are well understood and receive a lot of press or attention,” Galloway said. “Intestinal rehabilitation is not one of them, but it will never go away. There will always be a need for it,

David Galloway, M.D.

Colin Martin, M.D.

and it’s up to us to communicate that need. Everyone on this team is tremendous. Each one is passionate about what they do, and they put their heart into it. It’s a joy to work with them.”

Health literacy and the ability of families to understand and translate that understanding into quality care are all critical in terms of outcome. –David Galloway, M.D.

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