Alpha Stories

Published on Tuesday, March 20, 2012

Trine: Who says you need 14 pills a day after transplant?

Trine: Who says you need 14 pills a day after transplant?
Trine Engebretsen was being treated in the twelfth hospital to admit her in her short life – she was dying of Alpha- 1 liver disease, and she was only two years old.

Her pediatrician told her parents that she was failing quickly. The hospital staff offered to make her as comfortable as possible until her death.

Her parents refused to accept that advice. They got a liver transplant evaluation at Children’s Hospital in Pittsburgh. After a week of tests, she was medically approved for a transplant. The heartbreaking news was that the family medical insurance wouldn’t pay for the cost of the transplant—$250,000 – or the expensive anti-rejection drugs she would need afterward.

Her mother went to the United States government for help. “We went agency by agency, all the way up to the top,” says Trine’s mother Mary Ann. “After going everywhere, even to the White House, we were turned down.”

The little girl had one great, unusual asset. Her father was Norwegian, and Trine was a dual citizen of the United States and Norway. After being turned down for transplant coverage, Mary Ann appealed to Norway’s King Olav to cover the cost of her daughter’s transplant. The king approved, and Trine was placed on the active transplant list at Children’s Hospital.

The year was 1983, and liver transplants were considered experimental surgery. In the fall of that year, there were 50 children under age five on the Children’s Hospital list for liver transplantation. Donors – who had to be children who died from brain death, matching the intended recipient in size and blood type – were scarce, and many children died waiting.

Trine was one of the fortunate children. She became the first Floridian ever to receive a liver transplant on Jan. 19, 1984, when she was 32 months old. 

ENGEBRETSEN TODAY: Trine (pronounced TREE-na) is 26 now. She’s a University of Miami graduate living a normal life – with no need for anti-rejection drugs. Her body has accepted the donated liver and “I’m essentially cured,” she says. “The fact that I have tolerance is invaluable – it’s priceless.”

Adults who receive organ transplants must, routinely, spend the rest of their lives taking expensive anti-rejection drugs to prevent their bodies from attacking and rejecting the transplant. This isn’t always so for children who receive transplanted livers. Engebretsen was initially on anti-rejection drugs, but then was able to taper off them under her doctor’s supervision.

“I know of many childhood liver transplant recipients who have eventually been able to eliminate all their anti-rejection drugs,” says Dr. Robert A. Sandhaus, director of the Alpha-1 Program at the National Jewish Medical and Research Center in Denver, CO, and clinical director of the Alpha-1 Foundation.

Engebretsen “is as cured of her Alpha-1 as anyone can be with current treatments,” says Dr. Sandhaus. However, “There is one notable exception to this ‘cure.’ If and when she decides to have children, her sons and daughters will have exactly the same risk of having an abnormal Alpha-1 gene passed on to them as they would be if she had never had the transplant.”

Engebretsen lives with only minimal restrictions – like not drinking alcohol – and she must get lab work done every three months.

Mary Anne believes her daughter’s optimism made a big difference. “Attitude is really, really important. When Trine was listed for transplantation, we were told that if we were lucky enough to get a donor liver that was a perfect match, and to have a textbook surgery – statistically Trine had a 30% chance to survive for six months. You have to think optimistically.”

Engebretsen has spent much of her life educating others on the need and benefits of organ donation and transplant.

Engebretsen is the co-author of an educational program called “Life 101,” designed to teach young people about the benefits of transplantation and how becoming an organ donor can save lives. “Life 101” kicked off in 1998 with over 63,000 student participants. It generated media attention on ABC’s “Good Morning America.” Engebretsen says a large percentage of those who attended the program have signed a donor card.

She hopes to be accepted into medical school, partly because it will help her continue to be an advocate. “Throughout my entire life I’ve been tied to organ donation and transplantation in one aspect or another,” she said. “I hope to further the work of those who have gone before me by going to medical school and picking up where they left off.”

Engebretsen has competed in seven U.S. Transplant Games and the 1997 World Transplant Games in Australia, winning 11 gold medals and 30 medals in all. In 2004, she served as Assistant Director of the Australia Transplant Games in Adelaide, Australia.

She only hopes that with continued education and awareness, more people will become donors. “My goal is to make a difference in the lives of others – to make the most of the gifts I have been given and to continue the hard work of others who have helped me along the way,” Engebretsen said.