March 2006
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A life-saving holiday
Debbie and Ryan Kemmett When Ryan Kemmett was diagnosed with cystic fibrosis (CF), a genetic disease that causes thick, sticky mucus to build up in the lungs and digestive tract, at birth, his parents weren't surprised. Their daughter, Kayla, had been born with the disease a year and a half earlier.
Ryan's CF presented itself before he was even born when an ultrasound revealed an echogenic bowel (a bright area in his intestine), which can be indicative of the disease. An X-ray at birth confirmed a blockage in his intestine, which surgeons in his home state of Florida attempted to remove.
During the procedure, the surgeons learned that Ryan's small intestine was matted, twisted and filled with holes. So they ended up removing three-quarters of it, deeming it irreparable. The removal of so much intestine caused Ryan to develop short bowel syndrome (SBS), a condition in which patients are without a significant length of their small intestine, making them unable to absorb enough nutrition from regular food.
Ryan was put on total parenteral nutrition (TPN), a method of administering food intravenously through which he could get the necessary nutrients. But when the TPN, in combination with his CF, began to take its toll on his liver, the Kemmetts found themselves at an impasse. "The TPN was keeping Ryan alive, but at the same time killing him as it damaged his liver," says his mother, Debbie. "We felt so helpless."
Debbie and her husband, Rich, turned to Children's Hospital Boston, believing their then-6-month-old son might be a candidate for a serial transverse enteroplasty procedure (STEP), a bowel-lengthening surgery developed by Children's surgeons Heung Bae Kim, MD, and Tom Jaksic, MD, PhD.
But Kim determined that Ryan's intestine was too small for the procedure, so he began talking to the family about a transplant. "It was the only option they had left," says Kim.
Ryan was on the transplant list for 14 days, during which his health continued to deteriorate. "It didn't look good," recalls Daniel Kamin, MD, medical director of Intestinal Transplantation in Children's Division of Gastroenterology and Nutrition. "We were concerned that Ryan only had a few weeks, maybe even days, to live, so we placed him on the urgent transplant list."
"It was scary," says Debbie. "I had to carry a beeper."
As fate would have it, a donor was found for Ryan at 2 a.m. on Christmas Eve morning. "Rich and I were taking turns staying at the hospital with Ryan," says Debbie. "That night, Rich stayed behind, while I took the girls to Harvard Square for dinner and to stay overnight. I couldn't believe it when Rich called."
During the 8-hour procedure, Ryan was fitted with a new liver, stomach, intestines, pancreas and spleen, making him the first five-organ transplant recipient in New England.
The now-10-month-old has recovered well post-surgery. "He experienced some mild rejection of his liver, but it was easily treated with medication," says Kamin. "He's already off TPN and eating everything by mouth." "He looks great," adds Kim. "He's pink, healthy and gaining weight."
April is National Donate Life Month. To learn more about organ donation, visit: www.neob.org.
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