September 2018 – Speech and conference at the 2018 KODA (Korea Organ Donation Agency) Global Forum
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.
Connections are now routine in every State and the large majority of them have a positive outcome, according to the 58 organ procurement organizations (OPOs) designated by the US government to oversee organ donation.
These connections, which only happen if both sides want them, generally start with an exchange of anonymous letters under the supervision of doctors. Some get no further than that. If, however, all goes well, the families can move to signed letters and then, but again only if everyone approves, to actual meetings. Against the rare occasions when something goes wrong in this carefully-planned system is the incomparable satisfaction of learning, for example, that the boy who received your son’s heart, who could scarcely walk to the door of his apartment, is playing soccer again or that the girl who had been given only a few hours to live but received his liver now has a baby.
These are not dreamed-up examples. Both happened to us when my seven-year old son, Nicholas, was shot on the Salerno-Reggio Calabria highway in 1994 and his organs donated to seven very sick people. (The boy who got the heart is now dead but his family is profoundly grateful for the extra 22 years of good health the transplant gave him. The girl is now a sturdy woman of 42 with two children, one of whom she called Nicholas in honor of her little donor).
But anecdotes are unrepresentative and can be very misleading, so for an overall view I asked leaders in the American transplant community about their experience. This is what some of them told me:
1) “A recent review of our data indicates that about 52% of donor families will connect with a recipient (either by receiving a communication from or sending a communication to) within the first two years of their loved one’s organ donation,” says Alexandra K. Glazier, President & CEO, New England Donor Services, the OPO which covers the six New England states, home of one of the greatest concentrations of top-class hospitals in the world. “Many donor families and recipients have a natural interest in connecting with one another and that is experienced as a positive aspect of the donation and transplant process.”
2) Tom Mone, CEO of OneLegacy, the largest of the 58 organ procurement organizations, whose area covers twenty million people and two hundred hospitals in California, points out that actual meetings are only a small percentage of the total connections and the risk of something going wrong is the greatest but even there he says that in more than twenty years “we have no cases where families regretted meeting.”
3) “I am not aware of a single instance of physicians in the United States being philosophically opposed to donor families and recipients meeting.” Bryan Stewart, for 12 years communications director of OneLegacy.
4) Elling Eidbo, CEO of the Association of Organ Procurement Organizations, which represents all 58 OPOs, adds another crucial reason. “Every day, all over the United States, transplant physicians and their teams work closely with all organ procurement organizations to provide recipient outcomes and information that is shared with donor families. This happens because across the country, both transplant physicians and donation professionals understand and appreciate how important and significant these communications and connections are, including face-to-face meetings, to maintaining the critical trust and faith of their communities and society in donation and transplant. It is this trust and faith in our system that gives people the confidence to donate, and knowledge that the generous gift of life to others will be appreciated and respected with grace, dignity and sincerity”.
5) Rob Linderer, who retired a few weeks ago as CEO of MidWest Transplant Network said that in 38 years in his area, which covers several million people, he could recall only two cases where meetings between the two sides caused a problem. Two in 38 years! In one of those cases, a donor mother wanted to pay more attention to the heart recipient than the doctors thought desirable. She was told quietly but firmly she had to be less insistent and that was the end of the problem.
6) Opponents of change say there is little interest because families want to put a transplant behind them and get on with a new life. Certainly, that is true of many families and no responsible person would put any pressure on them. But families are hungry for information. Nearly 1,200 letters are exchanged between donor families and organs and tissue recipients every year through another leading American OPO, the Gift of Life Donor Program, based in Philadelphia, according to its CEO, Howard Nathan.
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
Article written by Reg Green and published in the first page of the Italian newspaper “Il Corriere della Sera” on August 23, 2018
A few months ago I received an email from complete strangers that has haunted me ever since. It came from an English couple, Dave and Debbie Marteau, whose 21-year old son, Jack, was killed in a road accident in Palermo in 2009 and whose organs were donated to three Italian families. Despite repeated attempts in those eight years they have not been able to find out anything about the recipients.
They don’t know if they are young or old, male or female or what they do for a living. They don’t even know if they are alive. Their pain was clear in every line.
The Marteaus wrote to me because my wife, Maggie, and I who are American, donated the organs of our seven-year old son, Nicholas, to seven very sick Italians, after he was shot in an attempted carjacking on the Salerno-Reggio Calabria autostrada in 1994.
Two foreign families, two identical decisions — but in our case the names of the recipients, their pictures and the stories of their rescue from the very edge of death were flashed around world and tens of millions of people realized, many for the first time, that hearts, kidneys, livers and other body parts that would otherwise be buried could instead bring dying people, many of them very young, back to full health.
Everywhere, from Russia and Venezuela to India and Taiwan, the willingness to donate was stimulated. I know because people in all those places have told me they personally were affected. In Italy alone in the following 10 years organ donation rates tripled, a rate of increase no other country has come close to and thousands of people are alive who would have died.
The difference between the two incidents is that in 1999 a law was passed that forbade healthcare personnel from revealing the identity of people involved in a transplant.
The law does not forbid the two sides from contacting each other — it would be unconstitutional if it did – but it has effectively prevented it.
The goal is laudable: to protect privacy and allow the healing process to continue for both donors and recipients. Everyone wants that. The question now is whether the law is being interpreted too rigidly for any family to find information that would help give it peace of mind.
Among other objections, opponents of change often say that if the transplant fails, the donor family may experience again the pain of losing their own loved ones. Maggie and I have personal experience about that. Two of Nicholas’ recipients have died but we have never felt we were losing him again, only the sadness of losing two other brave people with whom we had a bond.
Even then the loss was eased by their families’ gratitude that their loved one had that second chance. After the transplant, Andrea Mongiardo, the boy who got Nicholas’ heart told everyone he now had a Ferrari inside him now instead of a patch-up old jalopy. Valentina Lijoi, a cousin of his, smiled when she told me that story after Andrea died and I told her I feel sure it will make me smile too till my dying day: a beautiful shared moment and surely therapeutic for both of us.
Every country has to decide what degree of connection is desirable but I am convinced that as a general rule letting the two pairs of families, working with their doctors, make that decision offers by far the best chance of success.
In the United States, the two sides can contact each other if both want to – but only if both want to. The first contact is normally by anonymous letter, sent through the hospital, so that neither side can identify the other. The letters are read by their doctors to make sure there are no problems — that one side, for example, is not likely to make demands that the other does not want.
In time, if all goes well, they can reveal their names. Typically, they exchange stories that warm each other’s hearts. The recipients say what they can do that they were too ill to do before the transplant. The donor families describe what the donors’ favorite sports were, if they had children, tell anecdotes.Their doctors are ready to help resolve any friction that might occur and either party can break off contact at any stage.
Elling Eidbo, CEO of the Association of Organ Procurement Organizations, the US government-appointed organizations that administer these programs, says most donor families interact with their recipients in some way. These organizations, which work closely with hospitals all across the country, confirm that in the large majority of cases the results are positive: they help recovery not hinder it.
Can things go wrong? Of course. That’s life. But those occasions are rare. To give just one example: the CEO of one of the most successful OPOs says that in 38 years in his area, which has millions of people, he can remember only two cases of contact causing problems in his area, which includes millions of people. Two! In 38 years!
As a foreigner, it is not my place to make recommendations but I have a question about how the law is being applied: is preventing the few cases that go wrong worth denying every Italian family who wants it the consolation of knowing more about the people who saved their lives or whose lives they saved?
Published on Giornale Italiano di Nefrologia (The Italian Journal of Nephrology)
A few weeks ago I received an email from a family in England, complete strangers, which said, “Our 21-year old son, Jack, was run down and killed crossing a road in Sicily in 2009”. Despite the nightmare of this happening so far away, his parents, David and Debbie Marteau, donated his organs. Jack’s heart was sent to Rome and his kidneys and liver went to three people in Sicily.
And after eight years of wondering what happened, that is just about all they know. They have no idea if the recipients are young or old, male or female, or if all or none of them are still alive.
Their anguish and frustration are palpable. “We have always held a wish to make some connection with them or at least to know how they are doing,” David added. He and his wife have written to the two hospitals that performed the transplants but have had no reply. They asked me to try to find out whatever I could, anything. “We are out of ideas,” they said wearily.
They contacted me because my wife, Maggie, and I, who live in California, donated the organs of our seven-year old son, Nicholas, in Italy after he was shot in an attempted carjacking while we were on a family vacation there in 1994.
In our case, however, this being an event that captured Italy’s imagination, the identity of the seven recipients was known almost immediately.
Four months after the transplants we went back to Italy to meet them en masse at an event organized by the Bonino-Pulejo Foundation, the cultural foundation based in Messina, Sicily, where Nicholas died. Only the heart recipient was not there, still recovering from a condition that before the transplant was so serious he could scarcely walk to the door of his apartment.
Watched by hundreds of people in a packed hall and millions on television round the world, they came in with their families, a small army of people, some smiling, some tearful, some shy, some ebullient, but all looking vibrant and healthy.
Four months earlier they were phantoms. “Did one little body do all this?” I said to myself. Since then we have met them all again once or twice and one of them several times.
Twenty-three years later five of the seven are still alive and even the teenagers are approaching middle age. In that time organ donation rates in Italy have tripled, a rate of increase no other country has come close to. Although in any growth of such magnitude there are many causes, it is known as “The Nicholas Effect” and those front-page stories and television interviews, showing us with the robust survivors were a crucial part of it.
But in 1999, five years after Nicholas was killed, a new law was enacted to protect patients’ privacy that forbids healthcare personnel from disclosing information about either donors or recipients. In all normal circumstances the two sides know nothing about each other. Differing restrictions are in force in countries around the world (1).
Clearly, there are weighty reasons for the two sides not to have contact, such as the fear that one party may make unreasonable emotional demands on the other, worries about the effect on the donor family if the donation fails and even the possibility that the donor families will ask for money.
How real these risks are in practice I don’t know. American experience, where the rules are different, suggests they are greatly exaggerated. But against those risks are their opposites: that knowing nothing can cause considerable pain. I know that pain is real – or, in its milder form, a sense of something unfinished — because both donor families and recipients around the world have told me so. Given that organ donation is the most altruistic of all health decisions, and that all donor families are going through the ordeal of adjusting to a life that has lost an essential ingredient, that seems grossly unfair.
The meetings we have had with our own recipients have been therapeutic for both parties. On our side, we have living, smiling proof that a simple decision brought five people back from the shadow of death into more or less normal lives and gave back sight to two others.
We have never thought that Nicholas lives on in them in any meaningful way. “Those are their organs now, not his,” I remember Maggie saying to a newspaper reporter immediately after the transplant.
But talking with them or hearing stories about them or reading emails from them is a reminder that the life of our small boy, whom we all thought would do something important, was not wasted. You can imagine what a consolation that is.
For the recipients too, knowing us has been a tonic. They have seen for themselves that we do not begrudge them a happiness they gained only because Nicholas died. Better still, they know they can give us no better gift in return than to remain healthy and happy. Thus they have been spared the vague sense of guilt that clings to many organ recipients.
When I was in Italy a few months ago for a television interview with Nicholas’ liver recipient, Maria Pia Pedala, I decided to ask her something I have always kept away from. “Have you ever felt upset about the transplant?” I mumbled, fearing I was stepping on dangerous ground.
Her answer was direct and forceful. “At first, it upset me that I was alive because a little boy had died,” she said. It was a classic response. “But then Maggie told me: ‘If his liver had not gone to you, it would have gone to someone else.’” That lifted the burden, she said. Instead she thinks of Nicholas as an angel guarding the family, including her son who was born four years after the transplant and whom she named – yes – Nicholas.
Unlike us, the Marteau family is caught in a well-intentioned web of privacy protection, even though the circumstances of our donations are quite similar. There may be a way of finding the basic information they are looking for but if so no one has explained it to them and so far every avenue they and I have tried is closed.
Conditions differ markedly between different countries and what fits one would not work in another. However, in the United States the general rule is that the two sides can meet if both want to and if the health care organizations looking after them have no objection. The system appears to work well for all parties. There are no national statistics but plenty of anecdotal evidence. Any reader who wants to know more should contact the Association of Organ Procurement Organizations (www.aopo.org)
Rob Linderer, chief executive officer of Midwest Transplant Network, the government-designated organ procurement organization that oversees organ donation in the state of Kansas and a part of Missouri, says in 38 years he can recall only two interactions of recipient and donor families in his area when there were problems. One, more than thirty years ago, was the mother of a heart donor who became obsessed with the recipient and who was told gently but firmly she had to break off the contact.
In fact, for Linderer the biggest challenge in the early years was the one-year waiting period MidWest had as part of its policy. “Many recipients and donor families felt it was an unreasonable hurdle,” he says. “We revised our policy and now do not have time frames if both parties agree to communicate sooner.”
OneLegacy, the organ procurement organization for Los Angeles and most of Southern California, and one of the biggest in the United States, says that for its area too problems when the two sides contact each other are “rare” adding that “in the large majority of cases the outcomes are very positive.”
These interactions are quite numerous. Gift of Life Donor Program, another of the largest organ procurement organizations, receives three or four letters a day from one side wanting to contact the other side. Most are from recipients who want to express their gratitude to their donor family. They struggle to find their own way of saying “words are inadequate to thank you” but the urgent desire to find those words is clear in every one of them. Many add, “I think of my donor every day.” All this is balm for donor families.
All those who deal with these relationships have also seen cases of “secondary loss” where, when a recipient dies, the donor families re-live their own loss. It is a risk anyone who wants to start a relationship has to be aware of. The alternative, of course, is a lifetime of doubt, as the Marteau family is experiencing. In our case I can say that, when two of Nicholas’ recipients died, we never felt we were losing him again, only that we were losing two brave people with whom we felt a special bond.
Even then, hearing from families how much their loved ones achieved in those extra years is a priceless consolation. When Nicholas’ heart recipient, Andrea, died a few months ago, 23 years after the transplant, one of his cousins suggested we meet on my next visit to Italy. There, in a conversation that was a delight and comfort to both of us, she told me how he called his new heart a Ferrari, compared to the old patched-up jalopy he had before. It’s a story I will smile at until my dying day.
When these contacts lead to face-to-face meetings, the risks are higher – though both sides will have been thoroughly screened by the health teams before that takes place. But the rewards also can reach an entirely level. Recently, one of them took place in Los Angeles in public. It was electrifying. The story traces back to 1997 when Inger Jessen, then 55, received a new heart. She did what considerate organ recipients do, she wrote a letter thanking her anonymous donor family and sent it to her organ procurement organization, OneLegacy. Without revealing Inger’s name, they passed it on to the parents of the donor, 18-year old Nicole Mason, who had been hit by a small pickup truck as she was walking on a road near her home.
There was no reply. “I understood,” Inger said. “My son died from a heart attack when he was 30.”
Still, she was troubled. Before the transplant she couldn’t walk to her car without help and she wanted to visualize the people who had saved her life. She didn’t know their ages, what they did for a living or why they donated.
So when, two years later, she won two gold medals for swimming in the World Transplant Games — Olympic-type events for organ recipients — she sent a card to OneLegacy, to be passed on anonymously to the donor family, still knowing nothing about them but hoping it would give them some comfort to know the huge change their gift had made to her life. Again she did not hear back.
Meanwhile, Dan and Shirley Mason in Big Bear Lake, California were still numb from the loss of their lovely high-spirited daughter. “I had no feeling for anything. I had a four-year old grand-daughter and I couldn’t even play with her,” Dan remembers.
“Sometimes when I was driving I had to pull over to the side of the road to sob.”
Twenty years passed until out of the blue Inger, now 75, got a call from OneLegacy. The Masons wanted to meet her! For a moment she thought it was a mistake, a call for someone else, perhaps, that had gone astray. For days she went around in a dream.
“We were ready at last,” Dan explains. “We had seen how much good we could do by speaking out. It seemed so selfish not to open up.” Their grief is still evident in everything they do. “I don’t want to forget a thing about Nikki,” he says.
But having decided to meet Inger they wanted to have the maximum impact on organ donation and on May 15, 2017, 20 years to the day after their daughter’s death, they agreed to meet in front of a battery of television cameras.
“We spent a nervous night before the meeting,” Dan says. So did Inger, who has had more than her share of troubles: she still has three children but her husband is dead and one of her legs was amputated because of diabetes.
But when she and the Masons met, they fell into each other’s arms. “They were so loving,” Inger says. “She was so caring,” says Dan.
It was a heart-rending occasion for everyone, the climax coming when the Masons listened by stethoscope to the strong, regular beat of their daughter’s heart, which has worked perfectly from the start (2)(fig 1). OneLegacy made a three-minute video of the Masons meeting Inger Jessen.
But through the tears shone the joy. “I couldn’t believe I was listening to Nikki’s heart,” Dan recalls with awe. “I think of her every day. She seems so far away. But here she was again.”
For Inger too the meeting had a profound effect. “Since then,” she said, “I have felt a peace I haven’t known in years.”
Reg Green (www.nicholasgreen.org)
I have written this paper, with the encouragement of Professor Natale De Santo, nephrologist and professor emeritus at the University of Campania to stimulate discussion on the way the 1999 law works in practice. As a foreigner, I am very much aware that I have no grounds for drawing conclusions. I have simply laid out my experience so others can decide.
(La Privacy sulla Donazione degli Organi sta causando un inutile dolore alle famiglie?)
Link all’edizione in Italiano:
Article by Harry Low – BBC
Link to the complete article: http://www.bbc.com/news/magazine-39422660
Link to the Facebook post: https://www.facebook.com/bbcnews/posts/10154643441412217
Link to BBC Mundo – Spanish: http://www.bbc.com/mundo/noticias-39815787
Link to BBC Brazil – Portuguese: http://www.bbc.com/portuguese/geral-39818220
When baseball legend Rod Carew visited Konrad Reuland’s middle school to watch a basketball game, the teenager could talk of nothing else to his family that night. Fifteen years later Konrad’s heart saved Rod’s life.
By then Konrad had become a public figure too, an NFL tight end — he had played for the New York Jets and the Baltimore Ravens — and by all accounts was in the best shape of his life. But, like so many other healthy people, he was hit without warning by an aneurysm in December when he was 29 and, despite a 17-hour operation, became brain dead. His parents donated his organs, saving the lives of some very sick people, all unknown to them.
One, it turned out, was Rod Carew, who had developed heart failure after a massive heart attack in 2015, and it was Konrad’s mother, Mary, who figured it out after friends wondered aloud if he could have been Carew’s donor.
All she knew was that the heart came from a 29-year old who lived in Southern California but it was enough for her to ask question after question until she found out what she could scarcely believe: that part of her son was keeping alive a man he had idolized. Carew, now 71, was an icon to millions: the Hall of Fame Minneapolis Twins first baseman who was a seven-time American League batting champion and who stole more bases in one season than anyone in history except Ty Cobb.
At the time of Konrad’s death, however, he was a man struggling to stay alive, the only possible cure being a donated heart. Given the severity of his condition, the need for the new heart to be compatible with his own and the chronic scarcity of families willing to donate the heart of a loved one who has just died, the chances were dauntingly small.
But there is always a trickle of families like the Reulands and Rod has recovered strongly in both body and spirits. I met him at one of the press conferences that in recent days the two families have held jointly to promote good heart health and draw attention to the power of every organ donation to transform the world for multiple people. Asked whether having a heart that belonged to someone else gave him any physical problems he said simply, “No. I never think about it.”
At this press conference, held appropriately at the Little League stadium in Encino, California, I asked the two sides if meeting each other was beneficial. Neither hesitated. “Absolutely,” said Mary and Rhonda, Rod’s wife, added, “We feel we have known each other all our lives.” The Carews are profoundly grateful to the Reulands and the Reulands are comforted that Konrad’s decision to say ‘yes’ to organ donation, when he renewed his driver’s license a few months earlier, has saved the life of such a revered man.
More broadly, just as donating an organ gives solace to almost everyone who does it, Mary commented, “Knowing a piece of my baby is still down here on earth is a great comfort.” I had to fight back the tears. To call a 6-foot-6, 270-pound football player a baby in public takes boundless love and almost unbearable pain.