Pediatric short bowel syndrome (the most common cause of intestinal failure in children) occurs when half or more of the small intestine is missing. At Nemours Children’s Health System, our multidisciplinary teams of renowned specialists work together to provide innovative non-surgical treatments and advanced minimally invasive procedures to lengthen the bowel, including the advanced serial transverse enteroplasty (STEP) for newborns, babies, children and teens.
Expert Pediatric Care
Nemours pediatric general surgeons, gastroenterologists and other specialists — who rank top in the nation — provide coordinated, family-centered care that’s focused on relieving short bowel symptoms, restoring bowel function and giving your child good health and independence. We work together to evaluate your child, address your child’s nutritional needs, diagnose what’s causing short bowel syndrome, and develop a treatment plan specific to your child’s condition.
In the most rare and complex cases, Nemours specialists throughout Florida and the Delaware Valley can consult with one another to quickly make a diagnosis and begin treatment as soon as possible through our award-winning electronic health record system.
Types of Short Bowel Conditions We Treat
Also known as “short gut,” short bowel syndrome is most commonly due to a surgery performed to remove an injured or diseased portion of the small intestine — the part of the digestive tract responsible for nutrient absorption — but can also be caused by a defect in bowel function that may be congenital (present at birth) or acquired (occurs during development).
When a child has a shortened bowel, food passes too quickly for the small intestine to do its job properly (referred to as intestinal failure), resulting in dehydration, malnourishment, bacterial infections and poor growth and development.
Some conditions that result in short bowel syndrome include:
- intestinal atresia (when parts of the bowel are closed or missing)
- gastroschisis (a hole in the abdominal muscle and skin)
- omphalocele (a hole in the muscles and skin at the belly button)
- necrotizing enterocolitis (inflammation and blocked blood flow, usually due to prematurity)
- Crohn disease (intestinal inflammation or scarring)
- tumors (cancerous and non-cancerous)
- trauma (injury, including radiation therapy from cancer treatment)
- blood clots (blocked blood flow to the intestine)
- malrotation (when intestines do not turn and attach properly)
- volvulus (bowel twisting that can stop blood flow to the intestines)
Family-Centered Care at Its Best
At the center of our care are our patients and families. We understand that no one knows your child better than you, so we always take time listen to your concerns and provide personal service and comprehensive care for your child — and family — through emotional support, education and open communication.
For Appointments: (407) 650-7715
Hours: Monday–Friday, 8 a.m. to 5 p.m.
Clinic Location: Second Floor
Suzanne Sheres, MMSc, RD, LD/N, CDE
- photo ID
- medical and pharmacy insurance cards
- preferred pharmacy name and phone number
- names and dosage of all medications, including over-the-counter medication, your child is currently taking
- guardianship and custody papers, if a legal guardian rather than a parent accompanies your child
Bring these forms for your first appointment:
New Patient Forms
Returning Patient Forms
- Patient Presents Without Legal Guardian (PDF)
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Note: A parent or legal guardian must be with a child for a first visit.
Resources for Patients & Families
Nemours Children’s Hospital in Orlando is the premier multispecialty treatment center in the Southeast for pediatric intestinal failure and short bowel syndrome. Our team of top pediatric general surgeons and gastroenterologists is at the forefront of innovation and treatment with leading-edge, minimally invasive procedures and comprehensive, standards-based nutritional management and intestinal rehabilitation services for newborns, children and teens.
In fact, ours is the first children’s hospital in the region to offer the minimally invasive treatment for short bowel syndrome called serial transverse enteroplasty (STEP) — performed by one of an elite group of pediatric surgeons in the country with special expertise in this advanced bowel lengthening technique.
At Nemours Children’s Hospital, we do everything in our power to help your child gain maximum independence, and we’re here for your family for the long run, providing comprehensive clinical care, compassionate support and assistance in finding community resources to help your child grow up healthy.
Why Choose Us
Families from Central Florida, the Southeast, across the country and around the globe come to Nemours Children’s Hospital in Orlando’s Lake Nona Medical City because our pediatric specialists and surgeons are consistently recognized among the very best in clinical care and research. And because we’re an academic medical center, we’re at the leading edge of treating highly complex pediatric conditions, including short bowel syndrome in children.
Nemours Children’s Hospital is completely committed to caring for kids.
- the most advanced diagnostic techniques and equipment
- renowned surgeons and specialists involved in clinical trials, research and publications in peer-reviewed medical journals
- customized treatment plans based on advanced research and best practices
- innovative surgical techniques that minimize surgery risks, recovery time and pain
- extensive imaging and navigational equipment for precise instrument guidance
- nutritional experts trained in managing pediatric parenteral and enteral nutrition (intravenous and tube feeding) and the dietary needs of children with complex illnesses
- coordinated access to specialists
- family-centered facilities, support services and hospital amenities
strong, meaningful relationships with community primary care doctors
- access and close proximity to the Orlando International Airport for national and international patients
Multidisciplinary Approach to Pediatric Short Bowel Syndrome
Pediatric short bowel syndrome (also called “short gut”) occurs when a large portion of the small intestine, which is responsible for absorbing vital nutrients and fluids, is missing or not working because of surgery, disease or a defect. When the bowel is too short, there is less time for the digestive process to happen naturally, which can cause serious problems such as dehydration, poor growth and development and bacterial overgrowth. Short bowel syndrome is the most common cause of intestinal failure in children and requires advanced, ongoing multidisciplinary care.
Whether it’s improper bowel functioning, disease or bowel resection (surgical removal of a portion of the intestine) that’s causing short bowel symptoms, our goal is to restore your child’s working digestive system in the safest, most effective way.
Some conditions that result in short bowel include:
- incomplete bowel formation: intestinal atresia (when small or large parts of the bowel are closed or missing)
- abdominal wall defects: gastroschisis (a hole in the abdominal muscle and skin) and omphalocele (a hole in the muscles and skin at the belly button)
- bacterial infections: necrotizing enterocolitis (inflammation that causes tissue damage, usually due to prematurity)
- inflammatory disorders: Crohn disease
- problems with bowel positioning: malrotation (when intestines do not turn and attach properly) and volvulus (bowel twisting that can stop blood flow to the intestines)
Your child’s coordinated medical team includes board-certified pediatric specialists, registered nurses and certified health providers (social workers and Child Life specialists) who are experienced in the physiological and psychological changes that occur as children grow and develop. Your team may include:
- general surgeons (provide minimally invasive and open procedures currently not offered in our area)
- gastroenterologists (doctors who specialize in digestive health, liver health and nutrition)
- dietitians (manage the nutritional and the dietary needs of children with complex illnesses)
- neonatologists (newborn intensive care specialists)
- radiologists (provide diagnosis through medical imaging)
- interventional radiologists (perform image-guided minimally invasive procedures)
- pathologists (diagnose diseases by examining body tissues, fluids and organs)
- pain management specialists (help manage pain from surgery, disease or injury)
- speech and language pathologists (therapists specifically trained improve feeding and swallowing functions)
- behavioral health professionals (neuropsychologists, psychologists, psychiatrists)
Because of our award-winning electronic health record system, we can instantly consult with Nemours experts in Florida and at our sister hospital, Nemours/Alfred I. duPont Hospital for Children in Wilmington, Del., to pool our resources for the best care for your child no matter how complex the condition.
What to Expect at Nemours Children's Hospital
During your first visit, our team of short bowel specialists will evaluate your child’s symptoms, address your child’s nutritional needs and develop a plan for further testing and treatment. Depending on your child’s condition, the team may recommend certain diagnostic tests and procedures, some of which can take place the very same day.
Once we have all of the information we need, together, along with your family, we’ll create a personalized plan that may include a combination of non-surgical treatments (such as medicines and diet) and surgical bowel lengthening.
Short Bowel Testing and Diagnosis
Symptoms of short bowel syndrome in children depend on the part of the small intestine that is missing or non-functioning, and commonly include:
- weight loss
Absorptive Function of the Short Intestine
The small intestine is made up of three main sections, and the nutrition deficiency depends on the section of the small bowel that’s missing or not working.
- duodenum (first section of the small intestine that absorbs iron, folate and calcium)
- jejunum (middle section that absorbs fat, protein, carbohydrates and vitamins)
- ileum (last section that absorbs vitamin B12 and bile acids)
When a child has short gut, food passes through the intestine too quickly for the small intestine to absorb life-giving fluids, nutrients, proteins, fats, carbohydrates and vitamins.
Testing for conditions that cause short bowel syndrome include:
- blood tests (monitors electrolyte, mineral and vitamin levels)
- breath hydrogen testing (detects bacterial overgrowth malabsorption disorders)
- imaging studies (X-rays, ultrasound, CT or “CAT” scan, MRI)
- esophagogastroduodenoscopy, or EGD (evaluates the colon, intestines, stomach or esophagus through a tiny scope/camera)
- upper gastrointestinal (GI) series (also called “barium swallow,” examines the upper part of the digestive system after ingesting a chalky fluid)
- lower gastrointestinal (GI) series (also called “barium enema” examines the rectum, the large intestine and parts of the small intestine after ingesting a chalky fluid)
- liver biopsy (detects liver damage)
- wireless capsule endoscopy, or “camera in a pill” (when swallowed, provides high quality images throughout the entire digestive tract)
Pediatric Short Bowel Syndrome Treatment
The first line of treatment for all causes of intestinal failure, including short bowel syndrome, is to ensure your child is getting essential nutrition. When the bowel is not functioning and oral feeding is not enough, nutrition is provided intravenously (IV), a process called “parenteral” nutrition, or through a tube that’s attached directly to the intestine or stomach, called “enteral” nutrition. Because long-term parenteral and enteral feeding can cause serious infection or organ damage, we gradually work to wean off of parenteral and enteral use and restore digestive functioning through comprehensive intestinal rehabilitation. We do this with nutritional management (using medicines and diet), minimally invasive surgery (to lengthen the small intestine) and bowel adaptation.
Minimally Invasive Bowel Lengthening Surgery in Central Florida
Surgery for short bowel syndrome can improve nutrient absorption by providing more surface area and time for the digestive process to naturally occur, and in some cases eliminate the need for intestinal transplantation.
At Nemours Children’s Hospital, we provide advanced surgical treatment for children of all ages, even the tiniest newborns, including serial transverse enteroplasty (STEP) — a minimally invasive bowel lengthening procedure performed by only a handful of pediatric general surgeons in the country.
The serial transverse enteroplasty (STEP) procedure is an advanced surgical technique that increases the existing length of the small intestine.
STEP is performed minimally invasively using a device that cuts and simultaneously staples perpendicular slits into a dilated (stretched) bowel. The result is a “zigzag” or accordion-like appearance and lengthened bowel surface area that improves nutrient absorption. Over time, the bowel flattens to a normal shape.
The Bianchi procedure for short bowel in children is the standard approach to bowel lengthening. This minimally invasive procedure is performed by dividing the dilated, or stretched, bowel in half (lengthwise) and attaching the ends one to another. The result is turning a smaller bowel with a larger diameter into a longer bowel with a smaller diameter.
Minimally invasive surgery means that surgeons can operate endoscopically (using existing body cavities) and/or laparoscopically (using small incisions) with tiny scopes (or cameras) instead of large, “open” incisions. This technology can reduce recovery time, pain and the risk for infection. Your surgeon will help your family understand the risks and benefits of surgery for your child’s condition.
Convenient Care and Support for the Entire Family
Dealing with a chronic or complex medical condition is difficult for your child and family, but you don’t have to go through it alone. Nemours Children’s Hospital provides an array of support services that begin on the very first day we meet, and continues throughout your journey.
In addition to expert medical care, our nurse navigators, educators, social workers and Child Life specialists provide:
- care coordination: scheduling multiple appointments, tests, procedures and at-home care at convenient times and places
- communication: keeping your primary care physician and community providers informed and in the loop
- collaboration: helping you create a support system and connecting you with families that are on the same journey
- encouragement at the hospital and clinic: offering medical play therapy and procedure/surgery demonstration to ease fears
- advocacy: offering a voice for your child and family to secure appropriate services at school and in the community
No matter where your child receives care at Nemours, your medical team (including your primary care provider) can access your child’s medical history, test results and visit notes anytime through our award-winning electronic health record system.
You can also view parts of your child's health records, communicate with your Nemours care team, make appointments, request prescription refills and more through our MyNemours online patient portal.