Intestinal Failure

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What is intestinal failure?

Intestinal failure is a condition that occurs when a child’s small intestine cannot absorb the nutrients needed to grow and thrive. This can be caused by a congenital injury or syndrome (occurred before birth) or an illness that damaged the intestine after birth, requiring removal of some part of the intestine. The most common cause of intestinal failure in children is short bowel (or short gut) syndrome.

Children with intestinal failure may also have normal intestinal length but impaired ability to absorb nutrients. Diseases including Crohn’s disease, congenital enteropathies (microvillus inclusion disease, tufting enteropathy) and motility disorders (Hirschsprung disease, chronic intestinal pseudo obstruction, Berdon syndrome) can cause intestinal failure.

What are the symptoms of intestinal failure?

Young patients with intestinal failure often experience gastrointestinal (GI) symptoms associated with an inability to absorb nutrients. Symptoms include:

  • Diarrhea
  • Bloating
  • Gas
  • Feeding intolerance
  • Oral aversion
  • Poor growth
  • Dehydration
  • Fluid and electrolyte imbalance
  • Vitamin and mineral deficiencies
  • Liver dysfunction, cholestasis

What is short bowel syndrome?

Short bowel syndrome (also known as short gut syndrome) occurs when a child’s intestines are shorter than the typical child’s. This leads to poor absorption of nutrients and the inability to support proper growth and development. Short bowel syndrome is the most common cause of intestinal failure in children.

Short bowel syndrome in children most commonly develops after part of the small intestine is removed during surgery for necrotizing enterocolitis or to correct intestines that form atypically prior to birth (a congenital disorder).

How do we diagnose 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, 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 to examine the small or large intestine. These tests, including upper endoscopy and colonoscopy, are conducted under anesthesia.

How do we treat intestinal failure?

The Pediatric Intestinal Rehabilitation Center takes a multidisciplinary approach to treat children with intestinal failure.  You can expect to have a team of specialists collaborating to care for your child. The goal of treatment is intestinal rehabilitation using strategies designed to make the bowel work better, such as nutritional support, nutritional rehabilitation, medication and restorative surgery. Treatments include:

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: Formula or blenderized foods are delivered to the stomach or small intestine through a feeding tube (gastrostomy tube or gastrojejunostomy tube)

Feeding or occupational therapy: Many children receiving enteral nutrition are also encouraged to eat small amounts of 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.

Medical management: A variety of medications slow down the movement of the intestine and help your child absorb food. We combine these to suit your child’s unique needs. Common medications include antidiarrheal medications like loperamide hydrochloride, soluble fiber, antacid medications like omeprazole and the intestinal growth hormone GLP-2. Vitamins may also be part of your child’s medical management.

Surgery: 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. NewYork-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.

Transplantation: We offer intestinal and multi-visceral organ transplantation to children when other treatment strategies have failed. Specialists at New York-Presbyterian Morgan Stanley Children’s Hospital 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.

Monitoring: Your child will be treated and monitored in our dedicated intestinal rehabilitation center by a pediatric gastroenterologist, nurse practitioner, registered dietician and pediatric surgeon.