July 15, 2008
By Marilyn Elias
After a spouse in the prime of life or a beloved child dies, grief-stricken family members often find little solace anywhere.
But a surprising source of comfort is emerging for some. Among families who have donated their loved ones' organs, there's a growing trend to contact the recipients, say experts in the transplant field.
Although records aren't kept on numbers of contacts, more whose lives were saved by an organ also are seeking out bereaved relatives to express gratitude and create new relationships. These unique bonds are mostly positive, hospital transplant coordinators say.
Research on effects of the new openness is sparse. But one small study suggests the contacts -- often discouraged by transplant officials until the past several years -- can be beneficial.
A few family members reported unwanted flashbacks to the relative's death or felt guilt over resentment of the recipient's health. But 89% found the contact a positive, healing experience, says study leader Pamela Albert of the New England Organ Bank.
That doesn't mean anyone can suddenly barge into the lives of someone who doesn't want contact. Liberalized guidelines set by transplant groups in 2004 have encouraged more contact but retain strong privacy safeguards, says Catherine Paykin, transplant services program director at the National Kidney Foundation.
After the surgery, both sides are typically told basic facts about the donor or recipient -- for example, age, sex and home state -- and also that they can send a letter if they want contact, Paykin says. The letters go through hospital transplant workers and organ-recovery agencies, so no names are released without consent, she says.
Contact may be limited to phone calls or e-mails. But some meet in person and even develop close relationships.
Howard Smith and Terry Ann Toland met Saturday at the National Kidney Foundation's U.S. Transplant Games in Pittsburgh, an Olympics-style event for organ recipients that honors donors and their families. Prior to Saturday, Smith of Honolulu and Toland, from Browns Mills, N.J., had been in close touch for about three years.
Toland's seemingly healthy husband, Greg, died of a massive heart attack at age 52 in 2005. Smith, a psychiatric social worker with liver cancer, received Greg's liver. Toland donated five of her husband's organs and wrote to every recipient.
"I felt a part of Greg was with them, and he was still living in some way."
She heard back from all of them. "One was a nurse with five kids, and he couldn't work until he got the transplant. That gave me such comfort," she says.
Still, she fell into a deep depression after her husband's death. Smith says he tried to buck her up in frequent phone calls. "She's much, much better now," he says. And they have a special bond because Smith lives in Hawaii and the Tolands loved Hawaii, vacationing there every year.
"Howard has become a very close friend," she says. "We talk all the time."
Maria DeJesus of Milpitas, Calif., also found new friends -- at the end of a route no mother wants to travel. Her son Michael, 18, was murdered in November 2005. She says Michael, a popular boy who wanted to be a pro baseball player, had told her he'd want to be an organ donor.
She and her husband drove to Las Vegas to meet the 59-year-old man who got Michael's heart. "He let us hear the heart beat in his chest, and it was a wonderful feeling knowing that Michael was helping someone else to live," she says. "It was like meeting relatives, they were so friendly."
Linda Rakowski, 49, of Alexandria, Minn., has Michael's kidney. She traveled to Milpitas in February for the dedication ceremony of a ball field named for Michael and stayed with his family. "As soon as they sent me his picture, I put it right next to my kids and grandchildren, because he's a part of me, he's a part of my family," she says.
Not everyone who pursues contact gets a reply, and organ recipients who don't write letters expressing gratitude have varied reasons. Feelings of inadequacy and fear of hurting donor families can keep recipients from coming forward, one survey suggests.
Gerard Migliore of Allentown, Pa., was in failing health before a kidney transplant at age 24. Still, it took him 13 years to write.
"I was a kid and just overwhelmed. I couldn't figure out how to say thank you," says Migliore, now 46. Eventually, he found the words and received a gracious reply from the family.
Instead of being angry at his delay, "they even told me, if I'm ever around Bakersfield, Calif., to look them up," he says. "In a simple paragraph, they erased all the guilt I had."
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