Mount Airy boy thriving after six-Organ transplant one year ago

By Katie E. Leslie

News-Post Staff

April 20, 2006

Photo by Travis Pratt Ashton Luffred, 14, swings on the hammock outside his house in Mount Airy.

MOUNT AIRY -- Ashton Luffred's stomach bears a cross.

Meeting at his navel, thick pink scars stretch from side to side and from his sternum to lower abdomen. Formed by the cross-section, each quadrant of skin bears inch-long oblong scars where tubes once protruded.

One year ago today, 14-year-old Ashton underwent a six-organ transplant at Children's Hospital of Pittsburgh. In the procedure, he received a new small intestine, duodenum, pancreas, stomach, liver and kidney.

His enlarged spleen was also removed, though not replaced.

Ashton is one of three people who have undergone multiple-organ transplant surgery at Children's Hospital of Pittsburgh. Between 1998 and Jan. 31, 2006, 25 multiple-organ surgeries consisting of liver, kidney, pancreas and intestine have been performed nationally, according to the Organ Procurement and Transplantation Network.

"I remember the first time I woke up. My eyes weren't open and I could feel everything. They were trying to put another IV in me," said Ashton, now an eighth-grader at New Market Middle School.

Though he missed half of seventh grade and all of sixth grade, most of his classmates are unaware of his surgery, he said. Ashton has a casual attitude regarding his experiences and prefers not to discuss his surgeries in great detail.

But he has shown a few classmates some of his scars.

"The girls fell back off their chairs," he said.

Ashton doesn't explain to most of his classmates why he misses a lot of school or that he takes 20 pills a day. Nor does he often tell them last year's surgery was not his first organ transplant.

"They just didn't know about that stuff. It seemed to me they didn't go to the doctor a lot," he said. "I asked them how many times they'd been to the hospital in their whole lives. They said 15. I told them I'd probably been there more than 200 times."

"More like 400 to 500 times," interjected Roxanne Luffred, Ashton's mother.

Born with chronic intestinal pseudo-obstruction, a rare disorder that prevents the stomach from emptying and filling and hinders absorption of nutrients, Ashton underwent a small intestine transplant in 1998, Ms. Luffred said.

When the Luffreds moved to Mount Airy roughly three years ago from Buffalo, N.Y., Ashton's body began to reject his transplanted intestines. After being hospitalized with an infection, Ashton's diseased intestines were removed in October 2003.

While waiting 18 months for a new organ, Ashton wore a stoma bag under his clothes to process waste.

"I hated that bag," he said.

His stomach looked concave, his mother said.

"His waist was no more than 2 inches wide from the side," she said.

The medications Ashton took had devastating side effects. He now wears hearing aids in both ears because of the damage caused by high toxicity levels in his blood.

Without his small intestine, Ashton was fed intravenously. A side effect of IV treatment is liver damage.

Ashton's liver began bleeding into his stoma bag in March of 2005, evidence of end-stage liver disease. Doctors also determined his stomach was not absorbing nutrients properly, his mother said.

The liver bleeding placed Ashton higher on the organ wait list, she said.

One month later, at 6 a.m. on April 20, 2005, the Luffreds received the call they had been waiting for -- a donor had been found.

But for Ms. Luffred, the news was met with mixed emotions.

"I'd start getting stressed out when we were waiting because I knew someone would lose their child," she said.

The Luffreds believe the donor organs came from a 7-year-old girl from Tennessee.

The 10-hour procedure required removing all of Ashton's organs before replacing them.

"It minimizes the number of connections and decreases complications," explained Lynn Seward, the pediatric transplant coordinator the Luffreds worked with at Children's Hospital.

Ms. Luffred said doctors initially didn't plan to perform a kidney transplant at the same time, suggesting Ashton could receive a kidney later from a different donor.

"I thought -- how are we going to do this?" she said. "He's going to be like Frankenstein. How do you live with three people's body parts?"

Quick recovery; long road ahead

Ashton was discharged from Children's Hospital in early June. Within days, he was laughing and toy-sword-fighting with his brothers in their Pittsburgh hotel, Ms. Luffred said.

He's the third of five children, with two older sisters and two younger brothers.

His 8-year-old brother, Ian, stands a few inches taller than him, as Ashton's height was stunted because of his medical issues. He didn't grow during the 18 months he waited for the multivisceral transplant.

After the surgery, his health and height improved dramatically. He sprouted 3 inches in the first three months and now stands roughly 4 feet 7 inches tall. The Luffreds were told he is ineligible for growth hormone therapy due to his kidney transplant, his mother said.

"(Ashton) would always say, I just want to be normal. He didn't want to have a label. I understand exactly how he feels," said Ms. Luffred, who has battled leukemia since 2001.

She said she worries Ashton's experiences and subsequent height prevent him from developing friendships.

"He is wise beyond his years, probably from being around adults his entire life," she said. "He's just so serious."

He performs well in school, she said, garnering A's and B's on his report cards.

"It's so awesome to see him so excited about life and learning," Ms. Luffred said. "He doesn't know it, but it's really a second chance."

His health and stature do not prevent Ashton from participating in many extracurricular activities. He plays lacrosse with his father, Jeffrey, as his coach. Perhaps even more thrilling, Ashton recently went skiing for the first time.

"I was probably the best skier, too ... I went on the black diamonds," he said. "I beat my brother."

Ms. Seward said doctors advise transplant patients to avoid certain contact sports, such as football and hockey, though other activities are acceptable.

"The whole point of transplantation is to give the children as normal of a life as possible," she said.

To his mother's relief, Ashton also enjoys less physical endeavors -- he's an amateur photographer.

With college just a few years away, Ashton said he would like to attend the University of Maryland, though he hasn't narrowed his field of interest. He'd like to become a professional photographer, actor, chef or possibly a pro athlete.

"But that's a long shot," he said.

He's also interested in becoming an emergency room medical doctor, he said, largely because of his favorite television show, "ER."

"When I didn't have any intestines, I'd sit on the couch and watch it every single day for two years," Ashton said. "I like that it's fast-paced like a real ER."

Copyright © 1997-06 Randall Family, LLC.

This article posted May 27, 2006.