Transplant Games forge connections

PITTSBURGH — They were precocious toddlers, both blond and blue-eyed, separated by a thousand miles between Miami and Mayfield, Ky.

The two girls would never meet but would be brought together through tragedy: Trine Engebretsen was born with a genetic disorder that would require what at the time was an extremely rare liver transplant, and Amanda DeLapp would die at just 18 months old after being stricken with a brain tumor.

In a rare surgery in Pittsburgh in 1984, Amanda's family donated their daughter's liver to Trine, making her one of the nation's youngest patients to receive a liver transplant.

For years, each family would try to contact the other. Trine's family sent a picture of their daughter dressed for Christmas to the DeLapp family, a picture that still sits on the bedroom dresser of Alisha DeLapp, Amanda's mother. That correspondence was followed by years of miscommunication, with each family mistakenly thinking the other didn't want any contact.

But Amanda's younger sister, born after her death, never gave up hope of one day meeting the girl who received her sister's liver.

Keisha DeLapp had found Trine on the Internet years ago, and read about her participation as a swimmer in the U.S. Transplant Games.

Keisha kept a MySpace page. Earlier this year, Keisha sent Trine a message:

”Hi. I'm Keisha DeLapp, Amanda DeLapp's sister. Me and my family would love to have contact with you if you would like to. Let me know.“

This month, the U.S. Transplant Games will be held for the first time in Pittsburgh, one of the pioneering centers for transplants in the country, 25 years after the surgery here that connected the Engebretsens and DeLapps.

At the games, these two families will look each other in the eyes for the first time.

In the beginning

Amanda was Alisha DeLapp's first child. Born in 1981, the little girl known as Mandy to her family was healthy and happy, even walking by the time she was 8 months old, her mother recalls.

A year later, everything would change. Amanda was hospitalized because she was vomiting and had pneumonia-like symptoms. Her parents rushed her to the hospital closest to their Mayfield home, where doctors were unable to figure out what was wrong. Her condition deteriorated, and fearing the worst, doctors rushed Amanda to a hospital in Nashville, about two hours away.

Doctors there found that Amanda had a brain tumor and was going to die. She was 18 months old.

At the hospital, a nurse asked the couple whether they would consider donating Amanda's organs.

”To me, at that time, it had to be God helping us to decide,“ Alisha DeLapp remembers. ”I can look back at that now and know it was the hardest decision I ever had to make.“

She refused an autopsy for Amanda, but decided her organs could benefit someone else.

Alisha and her husband returned home. They watched on the news that a little girl named Trine had received a liver transplant. Alisha remembered the little girl; she had seen Trine and her mom, Mary Ann Lunde, on Phil Donahue's show, Donahue, appealing for help.

The DeLapps knew immediately that their daughter's liver had saved Trine's life. (They would later find out that Amanda's kidneys were donated to a man in his 20s.)

The DeLapps were interviewed by a local TV station, and that interview aired on NBC's Today show. The DeLapps were interviewed along with Trine's family. They didn't speak directly to each other, but it was the closest the families would come to it for years.

Trine Engebretsen, now 26, doesn't remember much about the liver transplant that saved her life when she was 21/2 years old.

She had been born with a genetic disorder called alpha-1 antitrypsin deficiency, which resulted in her body not producing enough of a key enzyme in the liver. Her liver was so severely damaged that her best hope at survival was a liver transplant, a rare and expensive operation in the early 1980s.

Trine's parents appealed for help on TV. Her father, a Norwegian citizen, appealed to the Norwegian government, which agreed to pay for Trine's surgery. When she arrived at Children's Hospital of Pittsburgh for the transplant, doctors estimated she had less than 24 hours to live.

Trine was one of several children who had transplants at the Pittsburgh hospital in 1983 and 1984, remembers pioneering transplant surgeon Dr. Thomas Starzl, who performed the surgery.

Starzl remembers Trine and says he has met several donor families from those early years.

”I was profoundly and still am profoundly grateful to them, particularly in those days because it wasn't common (to donate organs). It required a lot of social conscience,“ Starzl said.

Over the years, Trine's family tried to contact the DeLapp family. She knew the family lived in Kentucky, but says letters her mother sent to an address for Amanda's grandparents were returned, unopened.

Several years ago, Trine wrote a thank-you note to the DeLapps for the lifesaving organ transplant and gave it to the local organ procurement organization for Kentucky, hoping they could pass it along to the family. The note never made it to them.

Meanwhile, she immersed herself in transplant-related endeavors.

She first attended the U.S. Transplant Games in 1992, and has attended most of the games since then. She has participated in swimming, running and even signed up for the shot put this year.

She met her fiancé, Ryan Labbe, in an online forum about organ transplants. He received his own liver transplant earlier this year. Trine is applying for medical school, in hopes of studying something transplant-related, and works for the Life Alliance Organ Recovery Agency in Florida.

Alisha DeLapp, now 48 and divorced, followed Trine's progress through online stories written about her from the various U.S. Transplant Games she competed in over the years. She kept the picture of Trine as a child in her Christmas dress — eerily, it was the same dress Amanda had worn in a Christmas snapshot — and hoped one day to be able to update it with a more recent photo.

”I know it's not my daughter, but it's just as special knowing that my daughter saved her life,“ Alisha DeLapp said. ”I'm proud of her, with the things that she's chosen to do with her life. It's so impressive to me.“

When the transplant games begin on Friday, Trine, Alisha and Keisha will meet for the first time, just miles from where Trine's surgery took place. Starzl will be there to greet them.

”I never got to know my sister. I never got to meet her or anything. By no means is Trine my sister, but that's kind of like a part of her,“ Keisha says.