Category Archives: Useful tools
In February 2014, a drunk driver in the American city of Lumberton, Texas, hit a car in which Dawn Sterling and her two daughters were riding. The adult daughter was pregnant and died instantly. The other daughter, a 15-year-old, died of head injuries and was an organ donor. Dawn was unconscious for over a month. She woke to find both her children and the expected grandchild gone. She recovered only to plan her suicide. “The very gifts that gave me life and purpose for the last twenty years were gone and I felt empty,” she says. At that point, she received a letter of such gratitude and hope from Lisa Barker, the 25-year old recipient of her daughter’s liver, that she could no longer face the thought of suicide. “Lisa saved my life,” she says. Dawn and her husband, Reid, have become close friends of Lisa and her family, who are planning to add to the good that came out of the transplant by adopting two children, siblings, from Ghana.
Few stories of the two sides communicating have such obvious momentous consequences as Dawn’s, which comes from Patricia Niles, CEO of Southwest Transplant Alliance, the organ procurement organization responsible to the US Government for organ donation in much of Texas and its 280 hospitals, one of which is Baylor, which recently delivered the first baby born in the US following a uterus transplant. “But the 58 American OPOs that cover every US state and work closely with many of the world’s best-known hospitals say that out of the tens of thousands of cases where both sides have communicated with each other, either by anonymous letter or face-to-face meetings, the results are helpful to both sides in the great majority of cases and in some cases dramatically so,” Reg Green says. “These communications also help boost organ donation rates because the two sides often decide to tell their stories in local schools, hospitals and churches so that other families will see for themselves how a simple decision can save multiple lives.”
Press release from Reg Green (first published in December 2017)
Four-year old Grant Thompson plays with Micki Parker, whose daughter Addie died when she too was four years old from complications of juvenile diabetes. Addie’s organs were donated and her liver saved Grant’s life. Says Micki: “I wanted to know everything about her recipients: did they like pets, were they funny like Addie was, did they like to snuggle up to their Mom after bath-time? Grant’s parents wanted to meet me too and reached out first. Amazingly, I was able to meet him in what was one of the most fulfilling events of my life. Knowing he is so healthy and happy has helped me deal better with the pain of losing Addie.”
(Photo by Alexa Citro)
In the United States communication between the two sides under the supervision of the patients’ medical advisers is strongly encouraged because it is therapeutic for both sides in the large majority of cases. Communication can be anything from the exchange of anonymous letters to face-to-face meetings,
The meeting was arranged by the Donor Network of Arizona, the organization chosen by the US Government to oversee organ donation throughout the state of Arizona.
Other Countries Say Communication Between Organ Donors And Recipients Is Beneficial In The “Vast Majority Of Cases.”
Evidence is coming in from widely different parts of the world that communication between organ donor families and their recipients is therapeutic for both sides, says Reg Green, father of Nicholas Green the seven-year old American boy who was shot on the Salerno-Reggio Calabria autostrada, who is leading a campaign for a public discussion of the application of Italy’s privacy policies that prevents any communication between the two sides. He cites remarks by Anthony Clarkson, Assistant Director for Organ Donation and Nursing at United Kingdom’s National Health Service Blood and Transplant, who says communication “is a positive and beneficial experience in the vast majority of cases.”
Mr. Clarkson adds: “When asked, nine out of 10 donor families indicated they would like to hear from the recipients of their loved one’s organs. Donor families who are contacted tell us it brings them great comfort and are grateful that their precious gift of donation has been acknowledged.”
In Italy, the law enacted in 1999 forbids health service personnel from giving any information about patients donating or receiving an organ. Mr. Clarkson did not make his remarks in reference to Italy. They are the United Kingdom’s conclusions from its own experience.
They were quoted in a statement sent to the British newspaper, The Guardian, on September 29 by Dave Marteau, father of a 21-year old Englishman killed in a road accident in Palermo whose organs were donated to four Italians but whose family was unable to find out anything about them for eight years.
“It is clear that the way Italian privacy laws are applied is causing pain to many donor families, despite the selfless decision of those families to save the lives of complete strangers,” Mr Green says.
Mr. Marteau also cites a survey at a university hospital in Brazil that found 67% of organ donation families wanted to meet recipients while 82% of transplanted patients expressed a desire to meet with donor families. “A large Californian study came up with similar findings, with 70% of donor families and 75% of organ recipients saying they would like to have phone or letter contact with their counterparts,” he adds.
In the United States, the 58 organ procurement organizations that oversee organ donation in all fifty states are unanimous in encouraging communication, according to Mr. Green, which can range from the exchange of anonymous letters to face-to-face meetings.
One of them, Lifebanc, based in Cleveland, home of the world-renowned Cleveland Clinic and University Hospitals of Cleveland, with whom it works closely, adds another dimension. “The healing power of donation and transplantation is perhaps never more powerful than when a donor family meets the recipients of their loved one’s life-saving gifts,” says its CEO, Gordon Bowen.
From a press release of The Nicholas Green Foundation – October 2017
The Policlinico Gemelli hospital, connected to the Catholic University of Rome, says “The Nicholas Effect” video (available at www.nicholasgreen.org under DVDs) is the most frequently-watched item on its website, even in competition with universal killers like cancer or headline grabbers like Zika.
Visit also https://nicholaseffect.org/links/