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The ultimate gift

Years after her daughter's liver was donated so that another could live, Linda Duty set out to find the recipient.

By LENNIE BENNETT

© St. Petersburg Times, published May 16, 2001


photo
[Times photo: James Borchuck]
Linda and Edgar Duty, who lost a baby in 1990, are shown with their children Janae, 2, Justin, 6, and Jeremy 12.
ST. PETERSBURG -- People find many ways to keep alive the memory of a dead loved one, building monuments, writing poems, planting trees. Linda and Edgar Duty did so by making a decision 11 years ago.

He was an electrician with the Coast Guard, stationed in Honolulu. They had a son, Jeremy, 1, and a daughter, Karen, 3 months old. Karen was hospitalized for several weeks because of an abnormal heart rhythm. At home, on a monitor, her heart stopped again and by the time doctors got it started, she had been without a pulse for more than 30 minutes. With her brain severely damaged, doctors recommended taking her off life support.

"We heard 'brain dead' and 'organ donor' in the same sentence," Mrs. Duty said. "Nothing's harder than losing a loved one and then being asked to think of someone else's needs, especially a stranger's. But they told us a baby in California needed a liver transplant to survive, and I didn't want another mother to go through what I did. So we agreed to donate her liver."

They signed papers and stayed with their daughter for her final hours.

The life lost and the one saved would change their lives, too.

"For the first several years you don't get away from the pain," Mrs. Duty said. "I waited four years to have another baby (Justin, now 6). I was petrified. He came home on a heart monitor. But he was fine. He was my lifeline. Life goes on."

They moved several more times with the Coast Guard, then came back to St. Petersburg, her hometown, after Edgar Duty left the service and began working for an electrical company. They had another baby, a daughter, Janae, now 2.

Mrs. Duty, a homemaker, became an advocate for organ donations and started a program to educate students about its importance. She joined support groups to help other parents with their grief. For the last six years, she thought about the baby who received Karen's liver.

"I wanted to know if she made it," Mrs. Duty said. "We had just bought a computer, so I searched online with the keywords 'children's liver transplant.' That's how I found her."

Through a series of lucky breaks, Mrs. Duty found a Web site posting photographs of organ recipients. One of them was an 11-year-old girl living in Oregon.

"She was the right age and she'd been transplanted as a baby. Even though she wasn't in California, she still lived out West. Something inside me said: This is the little girl."

Information she obtained from the hospital in California, where the operation took place, and the one in Hawaii, where Karen had died, confirmed what she suspected.

"I got the family's address but I didn't contact them for a while," Mrs. Duty said. "I finally wrote them a letter and told them who I was. I just wanted to know for Karen. Within a week, we had a letter back with photographs. I called and we talked for three hours."

Jeff and Bernadette Wertz's daughter Lauren was born in June 1989 with Bilary Atresia, a degenerative and incurable liver disease. By February she was in critical condition and on the short list for a liver transplant when the family was notified that a match had been found.

Many times, transplanted organs are rejected, sometimes even years after surgery, but Lauren's body accepted the other baby's liver and she survived.

In her letter to Mrs. Duty, Bernadette Wertz wrote, "Over the years, her medication has gradually decreased and she has grown up happy and healthy. She is now 11 and in sixth grade. ... There is certainly nothing we could ever say or do to fully express our gratitude to you. Your sacrifice must have been incredibly painful and difficult."

Finding out about the donor recipient gave Linda Duty a certain closure on her daughter's death, but it also gave her new resolve to develop her education program.

"I found peace in educating children about the importance of organ donation. We teach them about the organs in their bodies, ask them what organs can be donated while they're still alive."

She visits classrooms and talks to students about becoming organ donors. Most of her time has been spent at the school Jeremy attends, Riviera Middle in northeastern St. Petersburg, but she is scheduled to visit several other schools beginning in the fall.

"No parent wants to think about something happening to their children. But tragedy strikes every day. A child can come home and discuss it at the dinner table and even if the subject is never raised again, if a tragedy comes along, a family might remember and make the right decision."

Laurie Johansen, an Orlando mother, has started the program, which they named KODE, for Kids Organ Donor Education, at schools there. Her daughter Ashley has a serious liver disease and will probably need a transplant. Of the implications of that transplant, she said, "What I try to do instead of hoping someone dies is to think if someone were to pass away, that a loved one was strong enough to say yes to an organ donation."

They have a Web site, http://kodeprogram.org, designed to be child-friendly "and not too graphic," Mrs. Duty said. They try to dispel some of the misconceptions people have about organ donation.

The Dutys hope to meet the Wertz family this summer, but their plans have been complicated because Mrs. Wertz is being treated for cancer.

Lauren Wertz wrote a letter to Jeremy Duty and said, "I am really sorry about your sister. I thank your sister for saving my life."

Mrs. Duty said, "You can't imagine the happiness of knowing Lauren is alive and knowing her life was touched by my daughter."

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