Diagnosis and Treatment
About Our Program
At the New York-Presbyterian Morgan Stanley Children’s Hospital Pediatric Intestinal Rehabilitation Center, a multidisciplinary team of specialists provides advanced and comprehensive care to children with small bowel disorders leading to short bowel syndrome and intestinal failure.
Your child's team includes experts from pediatric gastroenterology, pediatric surgery, small bowel transplantation, pediatric hepatology (liver care), nutrition, nursing, neonatology (newborn care), endocrinology, feeding and occupational therapy, radiology, interventional radiology, pathology, child life, and social work. Together, our team customizes a plan of care tailored precisely to your child's needs.
For children diagnosed with short bowel syndrome and intestinal failure, New York-Presbyterian Morgan Stanley Children’s Hospital Pediatric Intestinal Rehabilitation Center uses the latest strategies and therapies to make the bowel work better, such as nutritional support, nutritional rehabilitation, medical management, and restorative surgery. Nutritional support with total parenteral nutrition (TPN) provides your child with nutrition directly into the bloodstream and enables our team to focus on rehabilitating your child’s intestines. Our multidisciplinary approach enables many children to become capable of absorbing oral nutrients on their own.
If your child is still unable to absorb enough nutrients or has irreversible intestinal problems with serious complications, we may recommend small bowel transplantation. At New York-Presbyterian Morgan Stanley Children’s Hospital, our transplantation specialists have been performing this surgery for more than two decades and are internationally renowned for their expertise.
Our Approach to Care
If your child has been diagnosed with short bowel syndrome or intestinal failure, our expert pediatric care teams will individualize and tailor care based on your child’s unique needs. Our goal is to manage and monitor your child’s condition from diagnosis until adulthood so that any disease progression can be managed quickly and effectively.
Holistic and Comprehensive Care
We recognize that every child with a digestive disorder such as intestinal failure has a unique set of symptoms, circumstances, and needs. We take a holistic approach to care that considers the entire patient, including his or her physical, emotional, and social factors. We strive to partner with patients and their parents in shared decision-making, empowering them with knowledge, support, and the most effective treatment options to achieve the best possible outcome for every child. Our clinic visits are comprehensive and include meeting with multiple members of our multidisciplinary team and having bloodwork and imaging tests performed as needed.
Our social worker provides families with psychosocial support and supportive counseling around having a chronically ill and medically fragile child and helps you, your child, and your family cope with the physical, emotional, and financial impacts. We want to ensure your child has the support they need at school and that they succeed despite their medical challenges. Our social worker provides advocacy with schools (helps to create a 504 plan for your child), insurance companies, early intervention, and all other organizations that you are interfacing with. Support is also provided in ordering supplies, setting up home nursing, and setting up transportation to and from our clinic.
Multidisciplinary Team Approach to Care
New York-Presbyterian’s multidisciplinary Pediatric Intestinal Rehabilitation Center has a history of close collaboration among clinical specialists, including experts from pediatric gastroenterology, pediatric surgery, small bowel transplantation, pediatric hepatology (liver care), nutrition, nursing, neonatology (newborn care), endocrinology, feeding and occupational therapy, radiology, interventional radiology, pathology, child life, and social work.
- If your child's care begins in the neonatal intensive care unit (NICU), he or she will receive care from neonatologists collaborating with our pediatric gastroenterologists. Once your baby leaves the NICU, the pediatric gastroenterology team continues to provide care.
- When your child is ready to leave the hospital, our team will continue to see him or her regularly in our multidisciplinary outpatient clinic, where we provide intestinal rehabilitation as your child grows.
Continuity of Care throughout the Lifespan of the Child
At New York-Presbyterian, a vital aspect of our digestive disease programs is continuity of care. Children who have a lifelong need for specialized care, such as those diagnosed with intestinal failure, are embraced by our care teams. We understand the continuous needs of patients regardless of age and are vested in making certain that the transition from childhood to adulthood is simplified by not needing to change care teams. Our integrated care team seamlessly transitions patients from childhood through the teen years and early adulthood. When the time comes, we help our patients transition to New York-Presbyterian adult care practitioners.
Parents as Team Members
As a parent, only you can provide important information about your child, especially how they were before becoming ill, and how they are feeling now. You can also help other team members shape your child's personalized treatment program based on your child's physical, emotional, and practical needs. Your input is critical for making final decisions regarding your child's care and our multidisciplinary team is here to work alongside you and your family to achieve the greatest possible outcomes for your child.
How We Diagnose Short Bowel Syndrome and Intestinal Failure
Many children with intestinal failure have had surgery to remove part of their intestines as infants. It is common for these children to develop short bowel syndrome and they are usually diagnosed after surgery and monitored closely.
For children who develop intestinal failure for other reasons or at an older age, diagnosis usually involves a comprehensive medical history and exam, along with blood and stool tests. The most common tests to diagnose intestinal failure include:
- Blood and urine tests to measure vitamin, mineral, and electrolyte levels.
- Stool tests to measure the absorption abilities of the intestine.
- Imaging tests to see internal organs including the intestine, liver, and gall bladder. Imaging tests may include ultrasound, elastography (non-invasive ultrasound to measure liver scarring), specialized x-rays (i.e., upper GI series or barium enema), or magnetic resonance imaging (MRI).
- Endoscopic evaluations to provide a more detailed view of the inside of the intestine. During these minimally invasive tests, the pediatric gastroenterologist inserts a long thin tube with a tiny camera at the end into the mouth or anus or through an ostomy to examine the small or large intestine. These tests, including upper endoscopy, colonoscopy, and ileostomy, are conducted under anesthesia.
How We Treat Short Bowel Syndrome and Intestinal Failure
At New York-Presbyterian, we take a multidisciplinary approach to treating children with short bowel syndrome and intestinal failure. The goal of treatment is intestinal rehabilitation using strategies designed to make the bowel work better, such as medical management, nutritional support, nutritional rehabilitation, and restorative surgery. Treatments include:
A variety of medications slow down the movement of the intestine and help your child absorb food and fluid. We combine these medications to suit your child’s unique needs. Common medications include antidiarrheal medications like loperamide, soluble fiber, antacid medications like omeprazole, and the intestinal growth hormone teduglutide, a GLP-2 analog. Vitamins may also be part of your child’s medical management Bloodwork will be monitored closely to ensure your child is receiving the electrolytes, hydration, vitamins, and minerals they need.
Total parenteral nutrition (TPN)
TPN is often given to children in the days or weeks following surgery, and some children require this form of nutrition for longer periods (months to years). TPN bypasses your child’s digestive system using a solution of nutrients and electrolytes delivered through a catheter placed in a central vein (intravenously). TPN can be life-saving for children who cannot digest food using their gastrointestinal tract.
Enteral nutrition includes formula or blenderized foods that are delivered to the stomach or small intestine through a feeding tube (i.e., gastrostomy tube or gastrojejunostomy tube)
Feeding or occupational therapy
Many children receiving enteral nutrition are also encouraged to eat small amounts of breast milk, formula, or food by mouth. This supports normal development of chewing, sucking, and swallowing. Feeding and occupational therapists support children as they learn to eat by mouth.
Oral nutrition is individualized for your child to encourage foods that are easily digested and absorbed and discourage foods that worsen diarrhea. Our ultimate goal is for your child to be able to eat and absorb oral nutrients on their own.
Your child’s pediatric surgeon will participate in your child’s team visits and will consider possible restorative surgeries that reshape the intestine to make it more functional. New York-Presbyterian Morgan Stanley Children’s Hospital is one of a few hospitals in the country to offer the serial transverse enteroplasty procedure (STEP), in which the small intestine is surgically reshaped to increase surface area and lengthen the amount of time it takes for food to move through it, increasing absorption of nutrients.
At New York-Presbyterian Morgan Stanley Children’s Hospital, we offer intestinal and multi-visceral organ transplantation to children when other treatment strategies have failed or are not possible. Our specialists perform isolated small intestine transplantation in children with intestinal failure who have a functioning liver and offer combined liver and intestinal transplantation for patients with both liver and intestinal failure.