Intestinal Failure

What is intestinal failure?

Intestinal failure means your child’s intestines cannot absorb enough water and nutrients from food for your child to grow and develop well.

  • Normally, the small intestine absorbs most of the water and nutrients in the foods we eat. Sometimes the small intestine does not work properly due to injury or disease or because part has been removed to treat another problem, such as gastroschisis. In these cases, a child may not have enough functioning small intestine to absorb the nutrition they need.

    Many diseases and conditions can lead to intestinal failure in children.

    The most common cause is short bowel syndrome (SBS). Children with SBS have had at least half of their small intestine removed to treat an injury, a disease or another intestinal problem. How severe SBS is depends on how much of your child’s small intestine still works.

  • There are two treatments for intestinal failure. One involves getting a complete form of nutrition through a central line. This is called total parenteral nutrition (TPN). Another is restoring the intestine’s function through intestinal rehabilitation.

    Some children need a third option, an intestine transplant, but advances in intestinal rehabilitation have greatly reduced the need for organ transplants.

Intestinal Failure at Seattle Children’s

Seattle Children’s has the only Intestinal Rehabilitation Program in the Pacific Northwest. Our team of specialists work together to restore intestinal function without a transplant in children who have intestinal failure. Research shows that multidisciplinary teams like ours make a big difference in reducing the health problems these children face.

We also have the only program in the Pacific Northwest and one of the few in the United States that includes specialists who can perform intestine transplants in children who need them.

  • Dr. Simon Horslen, the medical director of Liver and Intestine Transplant at Seattle Children’s, and Dr. Jorge Reyes, who directs the Transplant Center, are world-renowned experts in the field of intestinal and liver failure. Both have many years of experience treating children with complex digestive problems. Horslen directs the Intestinal Rehabilitation Program, and Dr. Patrick Javid is the General Surgery leader in the program.

    Horslen joined Seattle Children’s from the University of Nebraska Medical Center in Omaha, which is the largest intestine transplant center for children in the United States. Horslen was the medical director there and helped develop ways to use nonsurgical therapies for intestine rehabilitation.

    Reyes helped pioneer intestine transplant surgery, which is a relatively new procedure. He is also one of the few surgeons in the United States who has performed 200 multiorgan transplants on children.

    Javid is a pediatric general surgeon with a clinical specialty in intestinal failure. He is active in clinical research focusing on infants and young children with intestinal failure. Javid performs bowel-lengthening surgeries, including serial transverse enteroplasty (STEP).

  • We are committed to excellent results. We are always seeking to improve our transplant and nontransplant surgery techniques. We continue to innovate as well with diet and medicines so we can provide the most current treatments and the very best care for your child.

  • Our Intestinal Rehabilitation Program and Intestine Transplant Program include education and support for you and your child from compassionate experts who understand your family’s needs.

  • Our top research priority is finding ways to avoid the need for transplantation in infants with intestinal failure. We continue to advance the practice and understanding of transplants through our research programs.

Symptoms of Intestinal Failure

The most common cause of intestinal failure is short bowel syndrome (SBS). People with SBS have had at least half of their small intestine removed in surgery. Some symptoms linked with SBS include: 

  • Diarrhea
  • Bloating
  • Vomiting
  • Weakness
  • Extreme tiredness (fatigue)

Diagnosing Intestinal Failure

Several intestinal diseases or conditions can lead to intestinal failure. How doctors diagnose these problems depends on the condition. Some problems that can lead to intestinal failure are: 

Treating Intestinal Failure

Seattle Children’s offers a full range of treatment options for intestinal failure.

  • Children with intestinal failure cannot absorb nutrients from the food they eat, so they must get nutrition another way. We use total parenteral nutrition (TPN).

    TPN is a mixture containing nutrients given directly into your child’s bloodstream. The nutrients go through a tiny tube (catheter) placed in a central vein (intravenously, or by IV). Sometimes TPN is a long-term or even permanent solution for intestinal failure. The chances of problems due to the need for TPN tend to increase over time.

  • Some children can be slowly taken off TPN with a treatment option called intestinal rehabilitation. With intestinal rehabilitation, healthcare providers help your child’s intestine work better through diet, medicine and surgeries that do not include transplant.

    We have greatly reduced the need for intestine transplants using intestinal rehabilitation. Learn more about our Intestinal Rehabilitation Program.

  • If you and your child’s medical team decide an intestine transplant is the best option for your child, our team will support you and your family throughout the process. For information on intestine transplants at Seattle Children’s, please see What to Expect If Your Child Needs an Intestine Transplant.