Short Bowel Syndrome

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.

 
Read More About Short Bowel Syndrome

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)

Learn More About These Conditions and Related Topics From Nemours’ KidsHealth.org »


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.

Learn More About Why Families Choose Us »

Nemours Children's Hospital, Orlando


13535 Nemours Parkway
Orlando, FL 32827
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Learn More About This Location »

For Appointments: (407) 650-7715
Hours: Monday–Friday, 8 a.m. to 5 p.m.

Clinic Location: Second Floor

 
Meet the Dietiticians

Suzanne Sheres, MMSc, RD, LD/N, CDE

 
What to Bring
  • 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
New Patients

Bring these forms for your first appointment:

Returning Patients
  • Patient Presents Without Legal Guardian (PDF)
    English | Spanish
    Note: A parent or legal guardian must be with a child for a first visit.
 
Forms & Resources
New Patient Forms
Returning Patient Forms
  • Patient Presents Without Legal Guardian (PDF)
    English | Spanish
    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.

Learn More About Our Intestinal Failure Program at Nemours Children’s Hospital »


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.

 
Highlights of Our Care

Nemours Children’s Hospital is completely committed to caring for kids.

We offer:
  • 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.

 
Pediatric Short Bowel Conditions We Treat
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 Short Bowel Care Team

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:

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

Symptoms of short bowel syndrome in children depend on the part of the small intestine that is missing or non-functioning, and commonly include:

  • bloating
  • diarrhea
  • nausea
  • obstruction
  • vomiting
  • 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.

For example:

  • 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.

 
Diagnostic Tests and Procedures
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)

Learn More About These Conditions and Related Topics From Nemours’ KidsHealth.org »


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.

Learn More About Our Intestinal Failure Program at Nemours Children’s Hospital »


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.

 
Serial Transverse Enteroplasty (STEP)

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.

 
Bianchi Procedure

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.

 
Benefits of Minimally Invasive Surgery

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.

Learn More About Pediatric Surgery at Nemours Children’s Hospital »


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.

 
Support Services at Nemours Children’s Hospital
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
  • patient and family education: providing information about your child’s condition, treatments, clinical trials and recent research at our resource library in our first floor KidsTRACK center
  • 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
  • seminars and training (demonstrating how to use medical equipment and cooking recipes in the KidsTRACK kitchen)

Learn More About Support Services at Nemours Children’s Hospital in Orlando »

 
Convenient Follow-Up Appointments in Your Neighborhood

Some of the very same surgeons, gastroenterologists and nutritionists you may see at Nemours Children’s Hospital also provide follow-up appointments at our convenient specialty care locations in downtown Orlando, Lake Mary, Fla. and Melbourne, Fla.

 
Electronic Health Record: Keeping Track of Your Child’s Progress

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.

Learn More About MyNemours »


What to Expect When Your Child Needs Surgery

If your child needs surgery, you can trust the highly trained pediatric surgical team at Nemours Children’s Hospital. Our pediatric surgical specialists (surgeons, anesthesiologists, and nurses) understand what kids (and families) need, psychologically, and physically.

Because we truly believe in family-centered care, we invite you (one parent or guardian) to the operating room to be with your child until just after sedation. We also provide our families with a peaceful place to wait without leaving the surgical floor, in our beautiful rooftop garden.

 
What Happens During the Presurgical Visit

Before any type of surgical procedure, your child will require a presurgical visit. At this visit, you and your child will meet your surgeon, discuss the diagnosis and details of the operation, and get answers to all of your questions or concerns. You may also meet with an anesthesiologist if necessary.

We’ll call you before your visit so you'll know what to bring, like:
  • any medications your child is currently taking
  • your ID
  • insurance and/or Medicaid cards
  • proof of guardianship, if applicable

When you arrive for a presurgical visit, go directly to the presurgical clinic area on the second floor. There, the patient service representative will review and verify your information and insurance. You will also complete a medical history form.

A nurse practitioner will assist with the visit and order any necessary tests. She or he will also inform you about what to expect the day of the surgery, including:

  • how your family will be kept updated during the procedure
  • when you can expect the surgeon to come out and speak with you
  • when you can join your child in the recovery room

EmmiKids Programs: Online Educational Videos for Families

At the end of the presurgical visit, you and your child may have the option to view an online educational program from EmmiKids about the upcoming surgical procedure and the anesthesia. You can watch these programs at the hospital or you may choose to watch them at home or in your local library. We’ll give you an access code to view the program(s).

Learn More About EmmiKids at Nemours »

 
How to Prepare the Day Before Surgery

The day before surgery, the surgical services staff will call you to check on your child’s health status, give you a time of arrival for the next day, update you on feeding instructions, and answer any questions.

General Feeding/Drinking Instructions

No food, milk, formula or breast milk may be consumed after a specific time (provided by your surgeon) on the day of the surgery. Your child may only have apple juice, electrolyte replenishing/sports drinks or water up to four hours prior to scheduled surgery time. These are considered “clear liquids.” We ask that you do not substitute other juices. Special Note: Infants 11 months or younger may have breast milk, but only up to six hours prior to surgery.

Suggested items to pack for your child:
  • empty baby bottle or cup
  • special feeding or suction equipment (if needed)
  • bathrobe
  • slippers
  • socks
  • favorite stuffed animal and/or blanket
  • loose-fitting clothes
  • eyeglasses (if needed)
Please remove the following items from your child:
  • all jewelry — including earrings
  • fingernail polish
  • hair accessories
  • contact lenses
  • retainers
 
What Happens the Day of Surgery

On the day of surgery, we ask that you be here at the time instructed so your child’s surgery won’t be delayed. We encourage you to allow extra time in your travel plans in case of traffic or unexpected delays.

Parking and Where to Go in the Hospital

When you arrive at the hospital on the day of surgery, you can use our complimentary valet parking, or you can self-park in the garage near the outpatient entrance. Valet services are located at the outpatient entrance and are available Monday through Friday, from 8 a.m. to 6 p.m.

Once inside the hospital, go straight to the surgical services desk on the second floor. There, the patient service representative will greet you, review your child’s information and insurance status, and check your child in. We’ll give you a case number, as well as a pamphlet with instructions about where to go and what to do during the waiting period. We’ll ask your child to change into a hospital gown and will then check vital signs: temperature, pulse, blood pressure and weight.

Just Before Surgery

While waiting for surgery, your child can play in our colorful, relaxing surgical commons area featuring many interactive games and activities to help reduce anxiety and pass the time. We also have a “toy store” where your child or teen can choose from a variety of gifts like stuffed animals, ball caps, and electronic items to keep.

When it’s close to the time for surgery, we’ll escort you and your child to an exam room, where you’ll meet the anesthesiologist and operating room nurse. As part of our unique family-centered model of care, our anesthesiologists may allow one parent to accompany your child to the operating room and stay until just after the anesthesia is administered.

During and Just After Surgery

You’ll be asked to stay in the surgical waiting area while your child is in the operating room. A nurse liaison or a trained volunteer will keep you updated during the procedure. If you need to leave the area for any reason, please inform a staff member.

After surgery, your child’s surgeon will come out to discuss the procedure and answer any questions you may have. We’ll inform you as soon as you can join your child in the recovery area or “wake up” room.

Patients must be fully awake before discharge. You should plan to stay in the recovery area for at least one hour (or longer, depending on your child). It’s very common for children to experience nausea and/or vomiting just after surgery, and also have a flushed face. We’ll offer clear liquids to drink when your child is ready. If your child will be admitted to the hospital after surgery, you’ll be given instructions ahead of time.

Once your child is ready for discharge, a nurse will review instructions with you regarding diet, wound care, medication, activity, and when your child should return to see the doctor. You may also be given prescriptions.

 
What to Expect During and Just After Surgery

You’ll be asked to stay in the surgical waiting area while your child is in the operating room. A nurse liaison or a trained volunteer will keep you updated during the procedure. If you need to leave the area for any reason, please inform a staff member.

After surgery, your child’s surgeon will come out to discuss the procedure and answer any questions you may have. We’ll inform you as soon as you can join your child in the recovery area or “wake up” room.

Patients must be fully awake before discharge. You should plan to stay in the recovery area for at least one hour (or longer, depending on your child). It’s very common for children to experience nausea and/or vomiting just after surgery, and also have a flushed face. We’ll offer clear liquids to drink when your child is ready. If your child will be admitted to the hospital after surgery, you’ll be given instructions ahead of time.

Once your child is ready for discharge, a nurse will review instructions with you regarding diet, wound care, medication, activity, and when your child should return to see the doctor. You may also be given prescriptions.

 
What to Expect the Day After Surgery

Make sure your child rests as much as possible after surgery. Temporary nausea or vomiting is quite common after discharge. But if your child experiences any of the symptoms below, call your surgeon or the nursing staff immediately:

  • a fever of more than 101 degrees Fahrenheit
  • persistent nausea or vomiting
  • severe pain that’s not relieved by prescribed medication
  • excessive bleeding from an incision

A nurse will call to check on your child’s recovery and to address any questions or concerns. We’re committed to making your child’s surgical visit as pleasant and safe as possible – before, during and after the procedure.

 
Managing Pain After Surgery: Nemours Pain Management Program

If your child is experiencing postsurgical pain, we can help. Nemours Children’s Hospital has one of the only pediatric pain management programs in the country that provides holistic, whole-child — and whole family — healing for children and teens experiencing acute (temporary) or chronic (ongoing) pain. Our integrated program is led by a world-renowned pediatric anesthesiologist who is also board-certified in pain management. We focus on relieving the physical, mental, and emotional aspects of pain using a variety of therapies in an outpatient or inpatient (day stay hospital program) setting.

Learn More About Pediatric Pain Management at Nemours Children’s Hospital »


A Hospital Designed by Families, for Families

At Nemours Children’s Hospital, family-centered care is at the heart of everything we do. In fact, families helped shape the unique amenities and convenient services that make our hospital like no other in the region.

 
If Your Child Needs to Stay Overnight in Our Hospital

You’ll feel right at home in one of our private patient rooms designed with input from families who know what it’s like to have a child in the hospital.

Our large, comfortable, single-patient rooms have sleeping accommodations for two parents, a private bathroom, wireless Internet access, connections for DVD players and game systems, and two flat-screen TVs.

Other in-room features include:
  • full floor-to-ceiling windows for natural light
  • refrigerator for family meals and snacks
  • wardrobe storage for personal items and a hotel-style safe
  • GetWellNetwork interactive television (uniquely based on your child’s age, medical condition and more) and allows your child to watch TV, surf the Web, check e-mail, play music and games, and learn about your Nemours health care team.

Our “hospital within a garden” setting features many places for you and your family to go for fresh air and relaxation, including a one-acre interactive sensory discovery garden or one of our rooftop gardens on the second and fourth floors.

We have many more comforts and amenities such as:
  • complimentary valet and parking
  • kid-friendly commons areas for siblings
  • café and coffee shop
  • nondenominational chapel
  • concierge services

Learn More About Nemours Children’s Hospital »

 
Advanced Pediatric Medical Imaging Services Available Onsite

If your child needs medical imaging, we offer some of the area’s most advanced pediatric radiology services here on campus at Nemours
Children’s Hospital.

Our unique services include:
  • interventional radiology: Our team of experts uses image guidance to diagnose and treat diseases and tumors throughout the body. Certain conditions that previously required open surgery can now be treated by Nemours pediatric interventional radiologists. We are very fortunate to have the only dual-trained pediatric diagnostic and interventional radiologist in the state.
  • neuroradiological or cardiovascular imaging, and fetal MRI (magnetic resonance imaging): Our subspecialty-trained pediatric radiologists see children with complex conditions who require this highly specialized imaging.
  • Central Florida’s only 256-slice Brilliance iCT Scanner: We are one of only a handful of children’s hospitals in the country to have this latest generation CAT (or CT) scanner that scans faster than most machines and produces excellent images in a much shorter time with much less radiation exposure for the child.

Our team of board-certified pediatric radiologists and pediatric radiologic technologists are experts in the safe medical imaging of children of every age, even newborns.

We have also pledged our commitment to the “Image Gently” campaign of the Alliance for Radiation Safety in Pediatric Imaging, which is increasing awareness of the opportunities to promote radiation protection in the imaging of children.

Learn More About Medical Imaging at Nemours Children's Hospital »

 
Family-Centered Care Means We're Here for You

At Nemours, we want to hear your concerns and share with you everything we can about your child's condition and treatment. If English is not your first language, we'll make sure you understand what to expect — in your language.

Learn More About Interpreter Services at Nemours Children’s Hospital »

 
With Your Family From Clinic or Hospital to Home: KidsTRACK

If your child has a complex or chronic condition we encourage you to take advantage of KidsTRACK, a unique service of Nemours Children’s Hospital. Located on the first floor of our hospital, KidsTRACK is designed to help families by providing expert assistance and information on all aspects of your child’s care, even before you leave our hospital or clinic.

A KidsTRACK care coordinator is available during every step of diagnosis, treatment and healing — helping your family make a smooth transition from Nemours Children's Hospital to home. Your coordinator works alongside the nursing/case managers in our subspecialty areas and acts as a single point of contact connecting you to medical and community resources.

Simply ask your physician for a referral to KidsTRACK
or call (407) 650-7715.

Learn More About KidsTRACK at Nemours Children's Hospital »