Kids with short bowel syndrome are missing part of their small bowel.
Often, this deadly condition must be treated with a transplant, but now, a new way to treat these kids is finally changing that.
The ABC's of life for Clayton have not been easy. He was born with gastroschisis, a potentially deadly disease, causing his intestines to bulge out of his body.
Clayton's parents abandoned him at the hospital at birth. Nurse Courtney Burrell says he did not speak, and doctors thought he was either deaf or autistic.
Courtney says, "I just saw him there, not really playing, not really interacting with any people, but you know, there was something about him that drew me to him."
At four months old, Clayton became a candidate for a liver transplant. That is where the Advanced Intestinal Rehabilitation Program comes in. It is one of a few in the country that takes a multidisciplinary approach to the problem.
Dr. Debora Duro, medical director of the program at University of Miami, says, “It's a new approach that I think is the future of medicine."
Led by Dr. Duro, treatment consists of specialized nutrition that helps the remaining intestines in these patients to adapt and grow to absorb nutrients, instead of having them depend on a feeding tube and intravenous nutrition. Before the program, the only option for these kids was a transplant. The five-year survival rate is now 80%; compare that to 60% for a transplant.
"We are really, really saving kids from transplant and giving them a great quality of life."
As for Clayton, life keeps getting better. He was adopted two years ago by the nurse that helped him come out of his shell.
Courtney says, "Nobody ever gave him that chance. I saw something special in him, and I took the time to go in and bring him out."
This once shy boy is now thriving.
Dr. Duro says while pediatric intestinal rehab is an option for most kids with short bowel syndrome, some with very severe cases may still have to undergo a transplant.
SHORT BOWEL SYNDROME: Short bowel syndrome is a health condition in which nutrients are not properly absorbed due to the surgical removal of a large portion of the small intestine or severe intestinal disease. When areas of the small intestine are removed due to surgery, birth defects, or disease, usually there is not enough surface area left in the bowel to absorb enough nutrients for someone to survive. Most of the nutrients are absorbed and most of the food is digested in the small intestine. The main cause of short bowel syndrome is surgical removal of more than half of the small intestine due to dangerous intestinal diseases developed at birth. Newborns usually develop the syndrome when they are treated for diseases such as meconium ileus (associated with cystic fibrosis), congenital defects of the bowel (like gastroschisis, jejunoileal atresia, internal hernia, and congenital short bowel), or necrotizing enterocolitis (a condition that occurs in premature infants and leads to the death of bowel tissue). (Source: www.ncbi.nlm.nih.com)
HOW IS SHORT BOWEL SYNDROME TREATED? The main treatment for short bowel syndrome is nutritional support. Treatment involves the use of oral parenteral nutrition, rehydration solutions, enteral nutrition, and medications. Parenteral nutrition provides the patient with electrolytes, fluids, and liquid nutrients directly into their bloodstream through an intravenous tube in their vein. Oral rehydration solutions involve salt and sugar liquids. Enteral nutrition provides the patient with liquid food to the small intestine through the use of a feeding tube.
Treatment depends on the severity of the disease. Patients who have a mild case have to eat small, frequent meals and take fluid and nutritional supplements. Those who have a moderate case of short bowel syndrome are similar to those who have a mild case but have to undergo intravenous fluids and electrolyte supplements. Patients who have a severe case have to use parenteral nutrition, oral hydration solutions, and enteral nutrition. For those patients where other solutions have failed them, may have to resort to intestinal transplantation. (Source: www.digestive.niddk.nih.gov).
NEW HOPE WITH NEW TREATMENT! Researchers are studying new ways to help the remaining small intestine function, a new multidisciplinary approach to the problem was developed, it's called the Advanced Intestinal Rehabilitation Program. The Division of Pediatric Gastroenterology at the Miller School of Medicine, University of Miami, FL, is one of the few in the country that has undergone the new approach. Treatment consists mainly of specialized nutrition management aimed at helping the remaining intestines adapt and absorb nutrients. Before this program was created the only option for these patients was intestinal or liver transplants. Research has proven that the multidisciplinary approach is the most successful. To that extent, the program includes board certified pediatric gastroenterologist, transplant surgeons, pediatric surgeons, nurse practitioners, social workers, registered dietitian, pharmacists, and child psychologists. The program has increased the 5-year survival rate from 60 to 80%. (Source: www.pediatrics.med.miami.edu).
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