Intestinal failure results from surgical resection, congenital defect, or disease associated loss of absorption and is characterized by the inability to maintain protein-energy, fluid, electrolyte, or micronutrient balances when on a conventionally accepted normal diet. The causes of intestinal failure are usually grouped into three major categories:
- Short bowel syndrome, which is usually caused by necrotizing enterocolitis, gastroschisis, intestinal atresia, or mid-gut volvulus
- Neuromuscular diseases involving the gastrointestinal tract (such as total aganglionosis, long segment Hirschsprung disease or chronic intestinal pseudo-obstruction)
- Congenital diseases of the intestinal epithelium (microvillus inclusion disease)
Regardless of the cause, children with intestinal failure require very complex medical care. This care includes providing appropriate nutrition for normal growth, maintenance of optimal fluid and electrolyte balance, management of potential complications, and provision of specialized care for the subset of patients who will require intestinal transplantation.
The Difference at Children’s National
The goal of the program at Children’s National is to incorporate multiple medical and surgical therapies to promote intestinal adaption to eventually wean patients from parenteral nutrition. The multidisciplinary Intestinal Rehabilitation program is one of the few programs in the country for infants, children, and teens with short bowel syndrome and complex gastrointestinal disorders.
Director Clarivet Torres, MD, devotes her entire practice to patients with intestinal failure, and every member of the team specializes in treating these conditions. The team maintains a high survivability rate and is committed to prompt treatment of complications that can arise for patients. Children and families from around the world come to Children’s National for this expertise.
Our focused care has resulted in exceptionally high survivability rates. The program aims to improve health outcomes and help children and their families achieve improved quality of life. Here are some of our stats:
- Survivability rate among short bowel patients: 98.7 percent
- Resolution of cholestasis: 98 percent (with a mean time to normalized bilirubin of 10 weeks)
- Independent parenteral nutrition: 85 percent of short-bowel syndrome patients were weaned over a median time of 5 months after beginning our program
Specialized Intestinal Rehabilitation Unit
Children’s is the only hospital in the area with an inpatient unit dedicated exclusively for intestinal rehabilitation patients. We coordinate personalized medical, nutritional, and surgical treatment for the healthiest outcomes and improved quality of life for patients and families.
Treatment and Care
Intestinal rehabilitation involves dietary management with very precise control of metabolic balance, and prompt and effective treatment of complications. We closely monitor nutrition for normal growth, maintenance of optimal fluid and electrolyte balance, and management of potential concerns.
Multiple therapies must be undertaken in order to provide the best management to allow for eventual weaning of parenteral nutrition. The care of these patients is complex and requires an interdisciplinary management team, including a gastroenterologist, surgeon, dietitian, and general nurse and social support.
Children’s National offers the most advanced non-transplant surgical options for treatment for intestinal failure, with the goal of improving intestinal absorption and bowel function. These include small bowel reconstruction, and bowel lengthening procedures, such as the Bianchi and STEP (serial transverse enteroplasty), performed by some of the most highly trained pediatric surgeons.
Patients with intestinal failure encounter multiple acute and chronic problems. The real challenge in patients with intestinal failure comes from managing the many chronic complications that arise. The most common problems that can be found in the acute or chronic stages are diarrhea, fluid and electrolytes abnormalities, and nutrient loss.
Many of the chronic complications come from the use of intravenous feeding, including catheter-associated infection, cholestasis-hepatic dysfunction (Intestinal failure associated liver disease), metabolic complications, demineralization of bone, rickets, and progressive renal insufficiency.
Children’s works closely with the Center for Intestinal Care and Transplant at MedStar Georgetown University Hospital, in the instance that patients need a transplant.
Family Centered Care
We see children as they grow up, so we get to know their families. Dr. Torres says the program is like a family — everyone works together and supports one another, including parents, guardians, and children, who are critical members of the care team. Even former patients who are now adults still return to visit Dr. Torres and the team members.
Your Child’s Care Team
The program aims to provide the most advanced clinical care as well as improve quality of life for patients. Every team member understands the unique needs of each individual patient. Intestinal failure generally requires longer-term clinical care, and they work with families over time to monitor a patient’s nutrition and health. They ensure a child’s immediate medical needs are met and help families learn how to manage a child’s condition.
Other members of the program include:
- Clarivet Torres, MD, Division of Gastroenterology, Hepatology, and Nutrition - Medical Director of Intestinal Rehabilitation with 26 years of pediatric experience and the last 12 years exclusively dedicated to the rehabilitation of patients dependent on Parenteral Nutrition.
- Anthony Sandler, MD, Senior Vice President and Surgeon-in-Chief. He is a skilled pediatric surgeon, with special expertise in reconstructing the small bowel, and has been instrumental in providing surgical options for IR patients with bowel lengthening procedures, such as Bianchi or STEP procedures.
- Parvathi Mohan, MD, a nationally recognized expert in liver and bowel disease, with Children’s Division of Gastroenterology, Hepatology and Nutrition
- Sona Sehgal, MD, Division of Gastroenterology, Hepatology and Nutrition
- Muhammad A. Khan, MD, Division of Gastroenterology, Hepatology and Nutrition
- Carola Cerezo Alen, RN, coordinator
- Jane Bonner, RN, coordinator
- Krystal Artis, PA
- Roshnee Pennington, PA
- Karen Higginbotham, dietician
- Yvonne Doerre, social worker
Program specialists, who know your child’s medical history are available 24 hours a day, seven days a week, to answer general questions and help in an emergency.