April 21, 2006

Precious gift gives life new meaning for 16-year-old patient

When her Natick High School classmates ask 16-year-old Laurie Lukianov about the pale scar on her neck at the base of her throat, she'll jokingly tell them she was stabbed. If they believe her, she'll raise her sweatshirt to show them the discolored indentation that wraps around her lower abdomen. "And I got shot, too," she'll say.

If Laurie's tall tale sounds dramatic, the truth about her scars is perhaps even more so. They are a visible reminder that she is here today because of the generosity of a family she will never know, who donated the liver that keeps her alive.

Laurie (shown at right with her mother, Debbie) was born with biliary atresia, an incurable liver disease that causes inflammation and obstruction of the ducts that carry bile to the intestine and that over time can lead to cirrhosis and liver failure. In her first two years of life, Laurie had multiple surgeries to unblock her intestines, but remained very sick. A transplant was the best option, but because of the limited availability of organs — particularly for infants and small children — the Lukianovs were told that it might be years before Laurie could get a new liver.

Shortly after Laurie was put on the national organ transplant waiting list, the Lukianovs learned about living-related donor transplantation — a then-novel procedure by which an adult family member who is a tissue match can donate a portion of his or her liver to a child. Laurie's father, Alex, was a match, and Joseph Vacanti, MD, surgeon-in-chief for MassGeneral Hospital for Children who was then at Children's Hospital, transplanted half of Alex Lukianov's healthy liver into his 21/2-year-old daughter. It was the first time the procedure had been attempted on the East Coast.

Though Laurie's health improved, she was never truly well, and she spent much of the next 10 years in and out of the hospital. When she was 13, her bile ducts began to block, and a procedure to insert stents was unsuccessful. Laurie's liver was failing again, and she needed another transplant. This time, a living-related donor transplant was not an option.

Debbie Lukianov, her mother, will never forget the night of October 20, 2002, when the family received the call to tell them that there was a liver for her daughter. "We were so relieved and excited, but also terrified," she says. "Laurie was very sick, and the surgery was going to be very tough. And even as you're learning your child's life is going to be saved, there's the knowledge that it's only possible because a child has died, and the family has decided to donate his or her organs."

Laurie's surgery was grueling — it took more than 18 hours, a record for both the MGH and Vacanti — and afterward her other organs began to weaken and fail. For 13 days following the transplant, Laurie was operated on daily for complications and received some 500 units of blood products. Ironically, it was Laurie's new liver that pulled her through. "For a while, we didn't know if Laurie would survive," her mother says. "Even her heart was in failure. Her liver was strong though, and it was the reason she lived. This liver has saved her life in every way."

Today, if it weren't for Laurie's battle-worthy scars, it might be hard to see the full extent of the ordeal the Lukianovs endured. Laurie is healthy, active and thinking about a career in nursing. But none of the Lukianovs will ever forget that, for all the expertise and innovation brought to bear on Laurie's care, what saved her life was an act of generosity in its purest form.

"Organ donation is something few people think about until it hits home," Alex Lukianov says. Debbie adds, "We're forever grateful that one family thought of the unthinkable, and by doing so saved our daughter's life."

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As with all organ donations, the identities of donor and recipient families were kept anonymous and Laurie Lukianov knows only that her donor was a 16-year-old girl. To honor her and promote organ donor awareness, Laurie has spoken about her experience at numerous public venues, including the MGH.

For more information about organ and tissue donation and how to obtain a donor card, contact the New England Organ Bank at (800) 446-6362 or visit www.neob.org.