Intestinal Failure

A child with intestinal failure

Nemours’ board-certified general surgeons and pediatric gastroenterologists provide expert, multidisciplinary care for intestinal failure in children from all over the world — newborns to teenagers — caused by short bowel syndrome and motility and absorption disorders (such as necrotizing enterocolitis, intestinal atresia, Hirschsprung disease and microvillus inclusion disease).

Our collaborative teams offer comprehensive evaluation and whole-child, life-giving care including advanced non-surgical treatments (nutritional management and intestinal rehabilitation) and leading-edge minimally invasive surgical procedures.

 
Read More About Intestinal Failure in Children

The pediatric specialists and surgeons at Nemours — who are consistently recognized as some of the Best Doctors® in America — work closely with highly experienced registered dietitians, registered nurses, physician assistants, therapists and social workers to help families and kids with intestinal failure gain lifelong health and independence.

Together our teams are made up of leaders who continue to shape national and international best practices and standards for treating intestinal failure in children. In fact, Nemours pediatric general surgeons are among few in the country who perform the innovative serial transverse enteroplasty (STEP) technique for short bowel syndrome. And one of our own care team members literally helped write the book on parenteral and enteral nutrition (intravenous and tube feeding) and nutritional management for children with chronic and complex medical conditions.


Advanced Intestinal Failure Care Across the Miles

Intestinal failure in children is a very serious, rare and complex condition that results when the small intestine does not absorb enough of the fluids, vitamins and minerals the body needs to grow and develop. It’s caused by a number of intestinal problems. Early, expert evaluation and treatment is critical.

Through our award-winning electronic health record system, specialists (pediatric radiologists, pathologists, gastroenterologists and surgeons) across the entire Nemours Children’s Health System in the Delaware Valley and Florida can quickly connect to make a diagnosis and begin treatment as soon as possible. This means your child has access to a large team of top intestinal failure experts in the country without leaving the area.


Pediatric Intestinal Failure Conditions We Treat

Intestinal failure results from short bowel syndrome (a shortened small intestine), neuromuscular disorders that affect motility (movement of food through the intestine), diseases of the intestinal tract that affect bowel function and congenital (present at birth) diseases of intestinal lining.

We treat nearly every condition that causes intestinal failure in children, including:
  • chronic intestinal pseudo-obstruction (when contractions in the intestinal tract do not work properly)
  • gastroschisis (a hole in the muscles and skin in the abdomen)
  • Hirschsprung disease (blockage caused by improper muscle relaxation in the bowel)
  • inflammatory bowel disease (such as Crohn disease and ulcerative colitis)
  • intestinal aganglionosis (lack of ganglion nerve cells that impacts sensation)
  • intestinal atresia (when part of the intestine doesn’t develop properly)
  • microvillus inclusion disease (incomplete development and/or degeneration of cellular membranes in the wall of the intestine)
  • necrotizing enterocolitis (when part of the intestine dies due to bacterial infection or inflammation)
  • thrombotic disorders (when clots impact blood flow in the intestine)
  • tufting enteropathy (hereditary disease that affects the tiny villi, or hair-like projections, in the intestines)
  • volvulus (when the intestine is twisted and causes blockage)

Learn More About These Topics »


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 Nemours »

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Nemours Children's Hospital, Orlando


13535 Nemours Parkway
Orlando, FL 32827
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For Appointments: (407) 650-7715

Clinic Location: Second Floor

Hours: Monday–Friday, 8 a.m. to 5 p.m.

 
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’s Lake Nona Medical City is the region’s only coordinated treatment center for pediatric intestinal failure in newborns, children and teenagers. In addition to effective nonsurgical treatments for motility and absorption disorders, we’re one of the few children’s hospitals in the country that offers the advanced serial transverse enteroplasty (STEP) — a bowel lengthening procedure to treat short bowel syndrome (the most common cause of intestinal failure) — as well other leading-edge minimally invasive surgical techniques.

At Nemours, our goal is to do everything in our power to restore your child’s bowel function and provide the independence and confidence for a happy, healthy life.


Pediatric Care Like No Other

Families from Central Florida, the Southeast, across the country and around the globe come to Nemours Children’s Hospital 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 forefront of treating highly complex pediatric conditions, including intestinal failure 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 available
  • 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
  • one of the country’s few pediatric general surgeons capable of performing serial transverse enteroplasty (STEP) for short bowel syndrome
  • 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
  • care without delay; seamless, rapid 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 Intestinal Failure Care in Central Florida and Beyond

The world-class multidisciplinary intestinal failure care team at Nemours Children’s Hospital provides comprehensive evaluation, diagnosis, treatment, ongoing care and education for families and kids with intestinal failure caused by short bowel syndrome, motility/movement disorders and absorptive disorders of the small intestines. We have a deep understanding of the physiological and psychological changes that occur as children grow and develop, and we personalize our treatments to your child’s specific physical and emotional needs — from initial diagnosis to transition to adult health care.

Because intestinal failure in children can cause life-threatening problems, your child’s care can’t wait. That’s why we offer appointments with multiple members of our intestinal failure team within days (not weeks) to evaluate your child’s symptoms and make recommendations for further testing or treatment at the very first visit.

In the most rare and complex cases, our award-winning electronic health record system allows our specialists to consult instantly across the Nemours Children’s System throughout Florida and at our sister hospital, Nemours/Alfred I. duPont Hospital for Children in Wilmington, Del. This means your child’s case can be reviewed by a large group of leading intestinal failure experts — without leaving the area.

 
Members of Your Child’s Intestinal Care Team

Treating intestinal failure in children involves comprehensive, long-term management from multiple pediatric specialists.

Depending on the condition, your child’s medical team may include pediatric:

Our team also includes nurse care coordinators, social workers and Child Life specialists with special expertise in caring for pediatric patients with intestinal disorders.


Pediatric Intestinal Failure Conditions We Treat

 
Short Bowel Syndrome

Short bowel syndrome, or “short gut,” occurs when a baby is born with a short intestine or, more commonly, when a portion of the small intestine has been surgically removed (or “resected”) because of injury or disease.

Conditions that cause short bowel syndrome include:
  • gastroschisis (a hole in the muscles and skin in the abdomen)
  • inflammatory disorders (such as ulcerative colitis)
  • intestinal atresia (when part of the intestine doesn’t develop properly)
  • necrotizing enterocolitis (when part of the intestine dies due to bacterial infection/inflammation)
  • thrombotic disorders (when clots impact blood flow in the intestine)
  • volvulus (when the intestine is twisted and causes blockage)

Learn More About Short Bowel Syndrome and Care at Nemours »

 
Motility Disorders

Motility disorders occur when the muscles or nerves don’t move the stool through the intestine correctly — either too quickly or too slowly — which in turn, affects digestive function.

Motility disorders that can cause intestinal failure include:
  • Crohn disease (inflammatory bowel disease caused by the immune system attacking healthy cells in the intestine)
  • chronic intestinal pseudo-obstruction (when muscle contractions in the intestinal tract do not work properly)
  • Hirschsprung disease (blockage caused by improper muscle relaxation in the bowel)
  • intestinal aganglionosis (lack of ganglion nerve cells that impacts sensation)
 
Absorptive Disorders

Absorptive disorders are genetic, congenital (present at birth) diseases that affect the lining or “walls” of the intestines and impact how nutrients are absorbed into the body.

Absorptive disorders that can cause intestinal failure include:
  • microvillus inclusion disease (incomplete development and/or degeneration of cellular membranes in the wall of the intestine)
  • tufting enteropathy (hereditary disease that affects the tiny villi, or hair-like projections that aid absorption, in the intestines)


Diagnosing Intestinal Failure in Children

Depending on your child’s symptoms, we may order a variety of imaging studies and procedures.

 
Symptoms and Complications of Pediatric Intestinal Failure
Symptoms of intestinal failure depend on the cause, and commonly include:
  • diarrhea
  • constipation
  • bloating
  • abdominal pain
  • vomiting
  • weight loss or poor weight gain
  • poor appetite
Complications of intestinal failure in children can include:
  • dehydration and malnutrition
  • vitamin, mineral and electrolyte deficiencies
  • bacterial overgrowth
 
Diagnostic Tests We May Recommend
  • 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)

Treating Pediatric Intestinal Failure at Nemours Children's Hospital

The first line of treatment for pediatric intestinal failure is to provide for your child’s nutritional needs. When the bowel is not functioning, nutrition is provided typically through parenteral or enteral nutrition (intravenous or tube feeding). Then we work to help your child regain normal intestinal function through a combination of treatments that may include nutritional management, intestinal rehabilitation and minimally invasive surgery, if necessary.

 
Nutritional Management

Working together with pediatric gastroenterologists and surgeons, nutritionists at Nemours Children’s Hospital use national, standards-based nutritional management protocols developed with the contribution of a Nemours dietitian (standards from the American Society for Parenteral and Enteral Nutrition and Academy of Nutrition and Dietetics).

If your child’s digestive system isn’t working properly, or oral feeding isn’t adequate for healthy growth and development, we will provide important vitamins and minerals through:

  • parenteral nutrition, or “PN” (nutrients are infused through an intravenous catheter, or IV, for months or years)
  • enteral nutrition, or “EN” (more commonly known as “tube feeding,” nutrients are provided through a tube placed directly into a functioning part of the gastrointestinal tract, either in the stomach or small bowel)

We also educate your family on how to manage IV or tube feeding at home, and provide ongoing, customized nutritional planning based on your child’s condition, developmental stage and treatment goals.


Learn More About Nutritional Care at Nemours Children’s Hospital »

 
Intestinal Rehabilitation

Due to the high risk for blood infection and liver damage with very long-term IV or tube feeding, whenever possible, our goal is to restore your child’s natural bowel function through intestinal rehabilitation.

Intestinal rehabilitation involves gradually weaning your child off of parenteral or enteral nutrition, transitioning to oral feeding and adapting the bowels to work properly. We do this with careful, continuous planning and monitoring.

Treatments may include:
  • medicines to help the bowel work better (antibiotics, antacids, anti-diarrheal medicines, hormones to promote growth of mucosa, or the intestinal lining)
  • speech and language therapies to improve feeding and swallowing
  • nontransplant, minimally invasive surgery to fix problems with the small intestine
  • family support and guidance to help you find resources and understand the condition, treatments and how to care for your child at home
 
Specialized Care for Children With Digestive Motility Dysfunction

The pediatric gastroenterology motility team at Nemours Children’s Hospital is specially trained to diagnose and treat digestive motility problems in children, including those requiring special care.

Our Nemours Pediatric Motility Program manages a variety of conditions, including:
  • food refusal
  • dysphagia and other swallowing disorders
  • reflux
  • rumination
  • esophageal dysmotility
  • gastroparesis (when the stomach doesn’t empty food properly)
  • small intestine/colonic obstruction and pseudo-obstruction
  • chronic/episodic abdominal pain
  • outlet dysfunction (constipation)
  • other gastrointestinal motility disorders
 
Minimally Invasive Surgery for Pediatric Intestinal Failure and Short Bowel Syndrome

Minimally invasive surgical bowel tapering and lengthening techniques can fix problems with the small intestine and often eliminate the need for parenteral and enteral nutrition and, in many cases, intestinal transplantation.

Minimally invasive surgery to treat intestinal failure is performed endoscopically (using existing body cavities) and/or laparoscopically (using small incisions) with tiny scopes (or cameras) instead of large, “open” incisions in the abdomen. This technology can reduce recovery time, pain and the risk for infection. Surgical procedures include, but are not limited to:

  • restorative proctocolectomy (removing the rectum and part of the colon and attaching the small intestine to the anus)
  • intestinal resection (removing a portion of the small bowel that is not functioning)
  • laparoscopic colectomy (repairing or removing the colon)
  • stoma creation (making a hole in the abdomen for stool to pass through)

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

 
Advanced Surgical Treatment for Short Bowel Syndrome

Nemours Children’s Hospital has the expertise of one of a handful of pediatric general surgeons in the United States who performs the advanced serial transverse enteroplasty (STEP), a minimally invasive bowel lengthening technique for children with short bowel syndrome.

Bowel lengthening helps with absorption by providing more time for food to move through the intestines.

Two minimally invasive procedures include:
  • serial transverse enteroplasty, or STEP (includes a series of “V” incisions into the existing intestine to create a “zigzag” or accordion formation to lengthen the bowel)
  • Bianchi procedure (the standard method for bowel lengthening which includes separating the bowel lengthwise and attaching the tubes end-to-end)

Learn More About Short Bowel Syndrome and STEP Surgery at Nemours »


Caring For the Whole-Child and Family

At Nemours, we’re committed to not only treating your child’s physical condition, but also attending to the emotional health and wellness of the entire family. We’re here with you every step of the way, educating you about the medical condition and treatments, helping you manage your child’s home care and providing your child and family with coping strategies for success at home, at school and out in the community.

 
Coping and Support for the Entire Family

To help make the experience as comfortable as possible, we also provide emotional and psychosocial support and many other services for your child and family, including:

Learn More About the Support Services and Amenities at Nemours Children’s Hospital »

 
Where We Provide Care: Where and When You Need It

Our specialty inpatient and outpatient care services are offered on the same floor of our hospital, a design (recommended by our Family Advisory Council) that fosters maximum collaboration among your child’s specialists, and, just as important, is convenient for your family.

What’s more, some of the very same pediatric specialists your child sees at Nemours Children’s Hospital also provide convenient care at our specialty locations in downtown Orlando, Lake Mary and Melborne.

 
Electronic Health Record System: Keeping Track of Your Child’s Care

No matter where your child receives care at Nemours, your medical team (including your primary care provider) can keep track of your child’s progress and 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 »