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“Most families feel better if they have contacts”

Article by Reg Green on “Il Corriere della Sera”, Health insert, June 25 2020

“Some of these relationships are among the most fulfilling I have seen anywhere. Why would we want to inhibit that?”

The complete text in English:

   Imagine opening a letter from a stranger that starts, “Your son’s heart saved my life.”

     For the first time you realize what a profound difference you made when, instead of turning inward when your own child was declared brain dead, you gave life to someone you could not even visualize. Now you have living proof that instead of that heart being buried it is likely to give a more or less normal life to someone who, going to bed at night, had never known if he would wake up in the morning.

     Much the same is true of all the other organs and tissue. It’s true, many families don’t want to contact the other side but for those who do the experience is usually electrifying. In the United States thousands and thousands of organ donor families have received letters and the institutions overseeing organ donation are unanimous in believing that in the great majority of cases the contact has improved not just the donor family’s health and happiness but those of the letter-writer’s too.

     Saying thank you is the first step for recipients being able to deal judiciously with the feeling of guilt many of them feel in being alive only because someone else has died. But then to hear from the donor family what virtually all of them think — “Please keep healthy. We want our loved one’s gift to have the best possible result” — can demolish guilt as nothing else can.

     Even more important, none of the problems opponents of change forecast — such as the psychological damage to families who don’t like each other — has ever affected more than a small number of cases.

     The letters are anonymous and carefully vetted by the families’ health advisers. If the other side does not want to reply, that is the end of it. If they do reply, their letter is anonymous too. But if all goes well, as it generally does, the families in time may write freely to each other and, if both of them want to, they can decide to meet.

     Some of these relationships are among the most fulfilling I have seen anywhere. That shouldn’t be a surprise. These families are connected in a way that leaps over all the differences that normally keep us apart: class, age, nationality, religious and political views. Why would we want to inhibit that?

Link to the article online: https://www.corriere.it/salute/20_giugno_29/famiglie-si-sentono-meglio-il-dono-non-deve-diventare-debito-957c2290-b233-11ea-b99d-35d9ea91923c.shtml?refresh_ce-cp

 

 

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From ‘Il Corriere della Sera’ (Italy): “Has the time come to modify the rule of anonymity in organ donation (in Italy)?”

From “Il Corriere della Sera”, Health insert, June 25 2020

“The Italian law forbids the communications between the two parts involved in a transplant but a public opinion movement, inspired by the father of Nicholas Green, is asking for an opening”

“A movement of opinion inspired by Reginald Green, father of Nicholas, the child killed in Italy in 1994 and whose organs were donated by his parents to save the lives of seven people, is asking again for a modification of the rule”

The campaign by Reginald Green started in 2016. Interview to the President of the Italian National Transplant Center

 

Link: https://www.corriere.it/salute/cards/trapianti-arrivato-momento-superare-l-anonimato-donazione/1994-rapina-fallita-morte-piccolo-nicholas_principale.shtml?refresh_ce-cp

 

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‘The Nicholas Effect’ 25 years later: After we donated our son’s organs, Italy was never the same (Los Angeles Times article)

Link: https://www.latimes.com/opinion/story/2019-09-27/nicholas-effect-organ-donation-italy

Article by Reg Green

Opinion: ‘The Nicholas Effect’ 25 years later: After we donated our son’s organs, Italy was never the same

Nicholas Green, 7, on vacation in Switzerland a few days before he was killed in 1994 while his family drove through Italy. (family photo)

You may remember the story of how my young son, Nicholas, was killed. Many people do.

My wife, Maggie, and I and our two children were on vacation, traveling at night on a divided highway in southern Italy when a car with two masked men pulled up alongside us. One waved a pistol and yelled at us to stop.

We got away — but not before they fired several shots. One hit 7-year-old Nicholas in the head. Mercifully, his 4-year-old sister, Eleanor, asleep beside him, was unhurt.

Later we would learn that the assailants had planned to rob us, mistaking our rented car with its Rome license plates for one delivering jewelry.

For two dreadful days Nicholas was in a coma. He was then declared brain dead. He died 25 years ago Oct. 1.

Since that day, of course, nothing has been the same. I have never again tousled his hair or heard him say, “Good night, Daddy.”

Our only solace is the decision we made to donate his organs and corneas. They went to five terminally ill Italians — some on the edge of death, four of them teenagers — and to two adults who were going blind.

Five of the recipients are still alive.

Nicholas’ heart would beat in the chest of another for 23 years. When the 15-year-old boy received it, he barely had the strength to walk across a room.

The far-reaching and long-lived consequences of our decision to donate his organs have astonished us.

In the 10 years following Nicholas’ death, the rate of organ donation in Italy tripled. No other country has come anywhere near that growth rate. The phenomenon was given a name: the Nicholas Effect.

Letters arrived from all over the world and every corner of society, from admirals and pacifists, football players and gardeners. Believers saw the hand of God and nonbelievers the power of humanity. Young children, who do not even know what a transplant is, know that a little boy did something good and they want to do something good too. The elderly are thrilled to learn they can still do something that important.

Dr. Tom Starzl, often referred to as “the father of transplantation,” wrote to say, “you and your family have done more for organ donation than anyone else I know.” People around the world were suddenly aware that if someone they loved died of a brain injury, they could save three or four families on average from devastation by choosing to give.

Almost immediately after Nicholas was killed, a town in Sicily named a prominent square after him. What an honor, we thought. But that was just the beginning. More than a hundred streets, parks, playgrounds, bicycle paths and my favorite, a bridge, are named for Nicholas. We are no longer surprised when young men and women step out of a crowd to say they went to the Nicholas Green school in that town.

Maria Pia Pedala was 19 years old and in a coma when she received his liver. She quickly regained health, married and four years later had a baby boy. She named him Nicholas. Now tall and handsome, he is fit enough in a family with a history of liver disease to have been accepted for training as a noncommissioned officer in the Italian navy.

Italian families still name their children after Nicholas, and with the American spelling instead of the traditional Nicolas. I always hope people they meet will ask them how they got their names.

We did interviews everywhere — with Oprah Winfrey, Buddhist television stations in Taiwan, radio stations in Venezuela, magazines in Poland and so on. We wrote articles that appeared in publications such as the Journal of the American Medical Association, the Times of India, Boys’ Life and major newspapers.

So that I would never forget everything that happened — and to encourage other families to donate organs — I wrote a book called “The Nicholas Effect.” It was the basis for a late 1990s made-for-television movie, “Nicholas’ Gift,” starring Jamie Lee Curtis, that has been viewed by tens of millions of people worldwide. I can’t see how anyone can watch that movie and remain indifferent to organ donation.

At the Winter World Transplant Games, an Olympic-type event open only to organ recipients, children from around the world compete in an event called the Nicholas Cup. They learn to race in a week, often with a panache that seems almost lordly given their previous conditions. It’s one more lesson that a transplant does not just prolong life but transforms it.

In almost every country, donated organs fall short of the need. Every day in the U.S., 20 people die waiting for a transplant. Yet everywhere there is a disparity between people who say they are in favor of donating and those who actually do. It’s understandable. These families are coping with sudden death — from a car accident, violence, a stroke — and must make a decision there and then about an issue they probably have never seriously thought about. For many it is just too much.

Saving lives is the most obvious result of any decision to donate. But there are less tangible benefits that testify to the strength of the human spirit. Organ donation leaps the barriers between us: The hearts of black women beat inside white women — and vice versa. Muslims are breathing through Jewish lungs — and vice versa. And, as I always like to remind audiences, some Republicans now see the world through Democratic corneas — and vice versa.

One young woman in Rome wrote to us not long after we lost Nicholas. “Since your son has died my heart is beating faster,” she said. “I now think people, common persons, can change the world. When you go to the little graveyard place, please say this to him. ‘They closed your eyes but you opened mine.’ ”

When I am missing Nicholas more than usual, I like to think of sentiments like that.

Reg Green, 90, is author of “The Nicholas Effect” and advocates for organ donation as president of the Nicholas Green Foundation.

 

The article on the Facebook page of the L.A. Times: https://www.facebook.com/5863113009/posts/10157950555128010/

 

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An Article from Chile: “The Nicholas Effect, A Story All People Should Know”

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August 4, 2019 · 2:14 am

The Photos That Have Marked An Era (Facebook page)

Since it was published on this Facebook page by its administrator a month ago, almost 22.000 people said they liked the story that remembered Nicholas, 700 added a comment and almost 2000 shared this story, photo and message on their Facebook pages.

Link to read all comments: https://www.facebook.com/lefotochehannosegnatounepoca/photos/a.1469940289698598/3331357836890158/?type=3&theater

Instagram link: https://www.instagram.com/p/BxuBr4LIExm/

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SKY TG24 (Italy) – Interview – Organ donation, the campaign to change the law on anonymity

(March 14, 2019)

Link: https://video.sky.it/news/cronaca/donazione-organi-la-campagna-per-togliere-obbligo-anonimato/v495448.vid

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My Daughter Got Married Thinking of Nicholas

From “OGGI” magazine – Italy – March 8 2019

“Reginald Green campaigns to change the law on transplantation in Italy. I would like that also in your Country the donor family and the recipients could meet.”

Article on the Italian magazine ‘OGGI’

 

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BBC: Ten Unmissable long reads from 2017

From BBC World Service:

http://www.bbc.co.uk/programmes/articles/5NjRgdj9S6XkZLrg2xVT9pj/ten-unmissable-long-reads-from-2017

 

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What the OPOs (Organ Procurement Organizations) Say about Connections

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.

Reg Green.

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The life of the others thanks to the organs of Nicholas

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?

Reg Green.

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