WASHINGTON, DC—A decade after its launch, the Intestinal Rehabilitation Program at Children’s National Health System is a world leader in caring for children with short bowel syndrome (SBS) and intestinal failure. Analysis conducted as the program reaches its 10th anniversary shows a 98 percent survival rate for intestinal failure--significantly higher than the national and global survival averages (75 percent).
“These are very, very good results for any program and ours has been growing substantially in the last 10 years,” says Clarivet Torres, MD, a pediatric gastroenterologist who directs the Children’s National program.
Patients with short bowel syndrome or other intestinal failure are often unable to digest enough fluids and nutrients, requiring intravenous parenteral nutrition directly to the bloodstream. The goal for any intestinal rehabilitation program is to wean patients from parenteral nutrition and achieve “enteral autonomy” where all nutrients and fluids are received via the digestive system, known as enteral nutrition.
In addition to high survivability, nearly 88 percent of Children’s National patients were able to fully wean off parenteral nutrition and achieve this enteral autonomy. Dr. Torres points to a recent study from the Pediatric Intestinal Failure Consortium for typical survival and enteral autonomy rates for these disorders. In that study, across 13 institutions, the survival rate is closer to 75 percent, with only 43 percent weaning off parenteral nutrition over the course of three years.
Dr. Torres highlights two keys to the program’s success:
- Creation of a multi-disciplinary intestinal rehabilitation team specially trained to focus on these highly complex cases, including a dedicated program director as well as a dedicated pediatric surgeon, four supporting pediatric gastroenterologists, two nurse practitioners, a physician assistant, social worker, and case manager, as well as dedicated nursing staff.
- Building awareness and treatment protocols for intestinal failure patients across the hospital—from training emergency department staff to administer fluids and watch for sepsis, to teaching an entire cohort of pediatric residents about the importance of close follow up for these patients.
The program has cared for 150 patients with intestinal failure who were dependent on parenteral nutrition. More than 120 of those patients had short bowel syndrome. Children’s National is one of only a few institutions in the United States with a dedicated intestinal rehabilitation program, giving the organization the ability to offer infants, children, and teens the full spectrum of services for intestinal failure, including a specialized inpatient unit.
Having the institution’s support to focus specifically on this group of patients has made a world of difference,” Dr. Torres continues. “It has allowed myself and our pediatric surgeon a unique opportunity to become experts in the medical and surgical management of patients with short bowel and intestinal failure—and that benefits our patients tremendously. We are like a family, and we are very good at teaching, too, so everyone who needs to learn is taught how to provide care for our patients.
Media Contact: Jennifer Stinebiser, 703-568-8825
About Children’s National Health System
Children’s National Health System, based in Washington, D.C., has been serving the nation’s children since 1870. Children’s National is #1 for babies and ranked in every specialty evaluated by U.S. News & World Report including placement in the top 10 for: Cancer (#7), Neurology and Neurosurgery (#9), Orthopedics (#9) and Nephrology (#10). Children’s National has been designated two times as a Magnet®hospital, a designation given to hospitals that demonstrate the highest standards of nursing and patient care delivery. This pediatric academic health system offers expert care through a convenient, community-based primary care network and specialty outpatient centers. Home to the Children’s Research Institute and the Sheikh Zayed Institute for Pediatric Surgical Innovation, Children’s National is one of the nation’s top NIH-funded pediatric institutions. Children’s National is recognized for its expertise and innovation in pediatric care and as a strong voice for children through advocacy at the local, regional and national levels. For more information, visit ChildrensNational.org, or follow us on Facebook and Twitter.