Expert, long-term care
The Intestinal Rehabilitation Program (IRP) at Children’s Hospital of Philadelphia (CHOP) is a leader in clinical care of patients with short bowel disorders. The IRP’s multispecialty team includes pediatric gastroenterologists, dieticians, nurse practitioners, a surgeon, a social worker and an interventional radiologist. Established in 2009, the program provides comprehensive care for more than 160 children with bowel disorders and intestinal failure.
The majority of patients enter the program as infants who have either been born with short or malformed intestines or who were born prematurely and have lost part of their intestines due to disease. Others come to our program as children or teens, after large portions of their intestines have been damaged by disease, infection or surgery.
Children with these rare bowel conditions can’t absorb enough nutrients and electrolytes from food, breast milk or formula to survive and grow. Instead, they must rely at first on intravenous (IV) nutrition.
Over time, and with medical treatment and therapeutic support, many children with intestinal failure can experience “intestinal adaption,” a process where the bowels grow and gradually gain enough function to eliminate the need for IV nutrition. The goal of the program is to help children make this transition to tube and/or oral feeding.
Our approach to treatment
Our multispecialty team works in partnership with parents to provide for the nutritional and medical needs of patients while working toward their independence from care. The long-term retraining of the bowel through intestinal adaption is accomplished through meticulous long-term medical management, and may involve medication, diet or nutrition therapy, vitamin and mineral supplements, surgery or other interventions.
Collaboration between the medical team and parents is critical to patients’ long-term success, so the team works closely with parents to find treatment solutions that can be managed at home. The social worker is an important member of the team, who helps parents overcome obstacles in their children’s care.
Improved treatment protocols
Because most children with these conditions require IV nutrition for long periods, we have done research into and implemented strategies to reduce the risk of infection from central lines. Those strategies include careful catheter care, family education, and a new technique using ethanol locks to reduce the chance of bacterial contamination.
We offer a range of operations to reshape, lengthen or narrow the bowel. The goal of surgery is to improve the flow of food through the child’s intestine, allowing the body more time to absorb nutrients.
CHOP is one of the few hospitals in the nation to offer serial transverse enteroplasty (STEP). This innovative surgical procedure reshapes the small intestine, creates more usable surface area (for digestion), and keeps food moving at an appropriate pace through the digestive tract.
The team maintains close communication with intestinal transplant centers, helps families through the process of listing, and remains the primary care manager until transplant.
Patients with advanced liver disease
A small percentage of children with short bowels also have advanced liver disease. These children may be eligible to get a special intravenous fat emulsion called Omegaven through an expanded access IND protocol.
Why choose us for intestinal rehabilitation
Our team of medical specialists work together to care for your child, applying the latest research-based protocols. We also work with you — the parents — on an evolving long-term treatment plan, and we support you in the key role you play in your child’s care. Our goal, like yours, is to bring your child to independence from medical care.