2 Women, 1 Cause: Urging People To Donate Organs

A Life And A Death Compel Pair To Start Advocacy Group

September 22, 1991|By Arthur Hirsch | Arthur Hirsch,Staff writer

Kim Cunningham mourns her infant daughter; Carol Bryon oversees her year-old son's recovery from a life-threatening liver disease. This is the difference a few weeks can make in the world of organ transplants.

The two women met at Johns Hopkins Hospital in Baltimore this year and shared the anguish of waiting for organ donations that mightsave their children's lives. Now they share a cause: banging the drum for more people to become organ donors.

"They say 10 percent of the people who could be organ donors actually are," said Bryon, of Davidsonville, who founded Donor Organ National Out Reach. "If we could increase that to 30, 40 percent, I don'tthink there could be people waiting to the point of death."

"I want organ donation to be a household word, if that's possible," said Cunningham, of Pasadena. Her only child, Courtney, died at 8 months inJuly while waiting for a liver transplant.

The newborn DONOR organization is holding its first fund-raiser Sunday, Sept. 29, at the Davidsonville Ruritan Club. The 9 a.m. to 3 p.m. event will feature clowns, crafts, games, a raffle and a magic show.

"We don't expect toraise much," said Bryon, "just to get started with local advertisements." Ultimately, though, her hope is to foster a national advertising and public education campaign.

Bryon knows it will be difficult to get people used to the idea of planning for an organ donation. Sheknows it means asking people to plan for their own death or the death of a family member. Even with a donor card or a donor sticker attached to a driver's license, doctors may not remove organs for donationwithout the next of kin's permission.

"People look at death as something taboo, you don't want to talk about it, you don't want to tell your children about it," said Bryon. She and her husband, Greg, have two sons, Zachary, 13 months, and Wesley, 4 years. Bryon is encouraged, however, by the way advertising and information campaigns have changed public attitudes in the past.

"Ten years ago people didn't want to talk about AIDS. Now you have advertisements for condoms. It's no big deal.

"We're trying to show the other side of death," shesaid. "Death is always thought of as the end of everything. We're trying to show it's not."

Julie Mull Strange, a registered nurse with the Transplant Resource Center of Maryland, said it is "very rare that a family would ever go against the wishes of a loved one" on organ donation. But she urged those who are considering becoming donors to discuss it with their families.

Strange praised the DONOR campaign, but suggested that the cause of organ donation might be better served by all groups joining forces. She said the Transplant Resource Center plans to launch its own public information campaign.

Strange's organization is one of more than 50 non-profit groups in the country that acquire organs for transplants, working with the United Network for Organ Sharing -- a national computerized system -- to link organ donors and recipients.

As of July 31, she said, 23,598 patientsin the United States were on lists waiting for heart, lung, liver, kidney or pancreas transplants. That does not include the hundreds of thousands of people waiting for transplants of skin, corneas or bone.

One of every 10 people on the list in Maryland dies waiting for an organ transplant, Strange said.

Bryon's son Zachary was on the waiting list for a type-B liver from March through June. He was suffering from alpha antitrypsin deficiency, an enzyme deficiency that caused his liver to develop scar tissue and malfunction. His skin turned yellow and he failed to gain weight.

He underwent a nine-hour liver transplant at Johns Hopkins Hospital at the end of June.

"They told us he probably only had a matter of weeks left," said Bryon.

Zachary has been recovering well since the surgery, but Bryon said he'll likely have to take medication the rest of his life to suppress his immune system and ensure his body does not reject the new liver. Asa result of taking the medication, Zachary is more prone to illness.

The liver donor was a 10-year-old Nebraska child. Bryon said she was not told how the child died. She didn't ask. That's another emotional trial for the parent of a child waiting for an organ donation, Cunningham said.

"It's horrible to think that I had to wait for someone else's child to die so mine could live," she said. "But if thereis no hope for them, please give someone else the gift of life."

Her daughter, Courtney, was born with biliary atresia, a defect in which the bile duct does not connect to the small intestines. A 13-houroperation at the University of Maryland Medical System Hospital in Baltimore in February failed to correct the defect. She was placed on the waiting list for a liver transplant in early June. She waited seven weeks.

On July 29, the respirator in her hospital room was turned off. Moments later she died in her mother's arms.

"I think thatshe had a purpose here through her eight months of life," Cunninghamsaid. "I don't want anyone to forget what she went through."

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