Category Archives: Italy

Organ Donations Set a Record at India’s Biggest Hospital

    In April of this year Dr. Deepak Gupta, professor of neurosurgery at the All-India Institute of Medical Sciences (AIIMS) Delhi, coordinated the organ donation of a six-year old girl, Rolly Prajapati, who was shot while sleeping next to her parents at her home in Noida. The circumstances were close to the shooting of my own seven-year old son, Nicholas Green, while we were on a family holiday in Italy from our home in California. In the following 10 years organ donation rates in Italy tripled, a phenomenon that is known there as “the Nicholas Effect.” (nicholasgreen.org)

Donarte 2022

From left to right: Dr. Antonio David (Dean of Messina University), Dr. Deepak Gupta, Reg Green and Dr. Anna Teresa Mazzeo at Donarte Conference, Messina, October 2022

    A striking change has shown itself in India too. Since Rolly’s death, the number of organ donations at AIIMS Delhi has risen to 13, higher in those five months than for any full year since the transplant program there began in 1994. The 3,200 bed hospital usually has five to eight donations in a full year.

    The donations since Rolly’s death have yielded 43 life-saving organs and 26 tissues, such as corneas to restore sight and heart valves to cure children born with congenital heart diseases. One of the donations was from the youngest child ever transplanted in India. This rapid rise is already being talked about as “the Rolly Effect.”

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Maria Pia, Dying at 19, Is Now a Radiant 47-Year Old

She is 47, lives in Sicily and likes true stories with happy endings. That’s understandable. She was on her deathbed when she was 19.

Her name is Maria Pia Pedala and she was saved from a seemingly inevitable death by a liver transplant. When I met her a few months later she already looked full of good health. Her way back continued so well that in two years she married her loyal sweetheart, Salvatore, and four years after the transplant had a baby boy and two years after that a girl, two whole lives that would never have been.

Maria Pia Pedalà and Reg Green

Maria Pia Pedalà and Reg Green at Donarte Conference, October 2022. Photo by Andrea Scarabelli

     All this was a long time ago — she received her new liver in 1994 — but recently, back in Sicily for a few days, I chatted with her just before she gave a speech promoting organ donation at Donarte 2022, an international conference on transplantation at the University of Messina, and I could see in her the prototype of a busy matronly housewife, who gets up by 5.30 am daily, keeps the house clean and tidy, gardens, cooks and deals with all the other needs of a loving family.

She watches her health carefully, goes to bed early, eats sensibly and takes her medications meticulously, feeling she has an obligation to both the healthcare staff who have kept watch over her from her teenage to middle years and to the family who saved her life.

The result is she can do everything normal people of her age can do and in a line-up no one would pick her out as the one who had been the sickest. She also finds a preciousness in the small things in life that eludes most people.

Transplantation is a medical miracle and, even though it is an everyday procedure in hospitals all over the world, it doesn’t stop being a miracle that physicians can take a body part of someone who has died, put it into the body of someone who is dying and bring out of it a healthy person.

In this case, for my family, the story has an element in it that takes it to a higher level still: our son was her donor.

Author:  Reg Green

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Twenty-eight Years Later: Where Are Nicholas’ Killers?

A newspaper in Italy recently asked how we felt about how Nicholas’ killers were treated.

This is what we said:

We never wanted revenge, only what the law prescribed. The one who drove the car was given 20 years in prison so he served the prescribed sentence and was then released. The one who fired the shot was sentenced to life imprisonment but became a ‘pentito’ (that is, he cooperated with the police and supplied information to clear up other crimes) and has had a good enough life under house arrest to have fathered two children. I have to leave it to Italians to decide if that is sufficient punishment for taking the life of an innocent child.

Reg Green

Corte di Cassazione - Roma

The “Corte di Cassazione”, ‘Supreme Court of Cassation’, in Rome (Source: Wikimedia)

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From “La Stampa” Italian newspaper

“La Stampa”, a national Italian newspaper edited in Turin, just published the article “Organ Donation Group Comforts Families Who Didn’t Donate” by Reg Green, on Friday 15th.

La stampa article - July 15 2022

Article title: “Another beautiful deed after 28 years”

Link to the article in English in this blog: https://nicholaseffect.org/2022/07/01/organ-donation-group-comforts-families-who-didnt-donate/

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Organ Donation Group Comforts Families Who Didn’t Donate 

The Aido division for the Province of Alessandria (a volunteer group in the Piedmont region of Northern Italy, alessandria.provincia@aido.it) and the Alessandria hospital will soon start a new service that they have called the “Nicholas’ room” (named for ‘our’ Nicholas) to denote an environment of serenity to give psychological support not just to the families of organ donors but also to those who decided not to donate. “These people do not deserve to be judged, but must be supported and helped,” the group’s president, Nadia Biancato, said.

“That ‘no’ said in a dramatic moment can lead to beautiful unselfish deeds in the future.” It can also stimulate them to talk of their experience so that others might make different decisions about organ donation, she added.

Aido Alessandria - Nicholas' room

The introduction of “Nicholas’ room” project

The plan is to extend the project to all other areas of Piedmont. The City of Health hospital in Turin, Piedmont’s capital, already runs a similar project for donor families and has been very pleased with the results but the Alessandria version is the first in Italy to include non-donors.
Here are two links to local news sources (in Italian):

https://radiogold.it/cronaca/315900-alessandria-sostegno-psicologico-famiglie-donazione-organi/

https://www.ilpiccolo.net/generic/2022/06/08/video/nicholas-green-e-la-casa-che-da-supporto-psicologico-140764/

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The letter from the father of Nicholas Green: “My battle to allow contacts between the two sides in organ donation”

(Article by Reg Green published in ‘La Repubblica’, an Italian national newspaper. March 3, 2022)

When Dan and Shirley Mason. an American couple, met Inger Jessen, who when 55 years old had received the heart of their 18-year old daughter, Nicole, it was one of the most meaningful events of their lives. They all hugged, cried with joy and exchanged stories. They have become close friends.

The dramatic culmination of their first meeting was when the Masons heard through a stethoscope the steady beat of their daughter’s heart. “I couldn’t believe it,” Dan said later.  “Since Nikki was killed in a car accident twenty years ago, I think of her every day. She seems so far away. But here she was again.” Inger too was profoundly moved. “Since then,” she says, “I have felt a peace I haven’t known in years.”

     As the father of Nicholas Green, the seven-year old California boy who was shot in an attempted robbery on the Salerno to Reggio Calabria autostrada and whose organs and corneas my wife, Maggie, and I donated to seven very sick Italians, I share their view: the bonds we have forged with those seven have had a healing effect on all of us.

     On our side, we have been gratified to see how our son’s organs have transformed life for people who were once on the brink of death. To give just one example: Maria Pia Pedalà, the 19-year old Sicilian who received Nicholas’ liver had a baby four years after the transplant — an impossible happening beforehand. She called the baby Nicholas and in a family with a history of liver disease he is fit enough to have become a non-commissioned officer in the navy.

    On their side, the recipients can see we don’t hold it against them that they are living only because our son died — and that has freed them from the sense of guilt that many recipients carry with them for the rest their lives. Twenty-seven years after the transplants, five of the seven are still alive.

   But communication between organ donor families and their recipients is almost impossible in Italy under a law (91/99) that was passed more than twenty years ago because lawmakers feared that any contact, even if both sides want it, risks psychological damage. Even anonymous letters are forbidden!

     In the United States, however, tens of thousands of families have either met face to face or have written to each other and in the overwhelming majority of cases the happiness and health of both sides have improved. In fact every one of the 58 organ procurement organizations in the United States, that under the Department of Health look after both donors and recipients, encourages contact.

La Repubblica Facebook post - March 12 2022

The article had more than 16,000 likes on the Facebook page of the newspaper

     Of course, these contacts are planned in conjunction with the families’ medical advisers: finding each other through the Internet, as some Italian families do, is asking for trouble. Contact usually begins when one side writes anonymously to their transplant team, who scrutinize it to make sure there is no sign of risk, such as an overwrought family or one likely to make emotional demands on the other side. If the family receiving the letter does not want to write back, communication stops cold. If they want to reply, however, they do so, also anonymously, and the first family also has the option of continuing or breaking off the conversation there and then. After a while, however, both sides can reveal their identity if they wish and share their experiences as many thousands have.

     The result of all this care is that none of the morbid forecasts of things going wrong has happened on any scale. For example, I couldn’t uncover one case in America of a donor asking a recipient for money. Instead, imagine the thrill we had when a cousin of the 15-year old who received Nicholas’ heart told us that after the transplant he said to everyone he met, “I used to have a worn-out old jalopy for a heart. Now I have a Ferrari.”

     To this day in Italy when those who oppose liberalization are asked for proof of any significant numbers of things going wrong they are unable to provide them. Can things go wrong? Of course. But the thousands and thousands of medically documented cases where things went well in the US are evidence that the problems are extremely rare. I challenge opponents of change to show any statistics of problems.

     Despite all this, when I, with just one helper, Andrea Scarabelli in Rome, started a campaign in 2016 to liberalize contacts between the two sides in Italy we were so alone that we became known as Don Quixote and Sancho Panza. But we sent the evidence we collected to every national organization involved in transplantation and, after studying it, all of them — the National Transplantation Center, the National Bioethics Committee and the National Institute of Health — have come out in favor of contact when it is done under authorized medical supervision and when both sides have clearly expressed a desire for it. Dr Pierpaolo Sileri, Deputy Minister of Health, has said firmly, “La liberalizzazione dei contatti tra riceventi e donatori è un gesto di umanità e civiltà, un atto doveroso”. I hope readers of this article will support the legislation that has been introduced to allow that to happen and relieve a lot of unhappiness in families who have performed one of the most selfless acts our society knows.

(Link to the article in Italian: https://www.repubblica.it/cronaca/2022/03/03/news/la_lettera_del_papa_di_nicholas_green_la_mia_battaglia_per_far_incontrare_chi_ha_donato_gli_organi-340120452/)

Author: Reg Green.

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Italian Organ Donation Rates Rebound to Record Levels

Organ donation rates in Italy are of great interest to Maggie and me because when our seven-year old son, Nicholas, became a donor there 27 years ago, the rates were almost the lowest in Western Europe. They are now among the highest. The latest official figures, just out, show donation rates have more than made up the decline that came with COVID-19 in 2020. Last year they went up 12.1 percent, reaching a rate of 22.9 per million of the population. When Nicholas was killed it was a little over 6 per million.

organ donation report 2021 by region in Italy

Source: Italian National Transplant Center (CNT) and SITO (Italian Society for Organ Donation) annual report

Many people express surprise that donations are such a low percentage around the world (“only 22 per million?” they say) but that is because donating organs is possible for only about 1 percent of the population, mostly people who die of a blow to the head as in a road accident, a fall or violence. The new figures show that 69 percent of Italians say they would become donors if they are eligible. This is a phenomenal change and people and institutions of all kinds have played their part.

Transplants over the years - preliminary data on 2021

Source: Italian National Transplant Center and SITO report – preliminary data

Speaking only of our own campaign, they range from Pope John Paul II — who showed how deeply moved he was by Nicholas’ death and the generous-hearted response of the Italian people, by authorizing the casting of a magnificent bell with the name of Nicholas and his seven recipients on it — to ordinary people all over Italy,  some in their thirties and forties who were then just children, even people not born at the time but who have heard the story from their parents or teachers.

IMG_2755 SITO CONFERENCE, ROME 2016

Reg Green speaks at SITO conference (Rome, November 2016)

Most of the individual names will be unfamiliar to readers but they show the variety of our allies. First is Andrea Scarabelli, with whom I have worked hand-in-glove from within days of Nicholas’ death, and who I call Nicholas’ best friend. Without him ‘the Nicholas Effect’ could easily have petered out after a few years instead of being a force virtually every adult Italian still knows about.

     So let me take this opportunity to publicly thank the Ministry of Health, the National Bioethics Committee, the National Transplantation Center and the National Institute of Health, in all of which we have close contacts. And, thank you, Italian journalists for recognizing the importance of organ donation even when it was not making the headlines: your ability to see the suffering of real people behind the statistics made me feel very proud of being a journalist too. But especially I want to thank Luca Dini, former editor of Vanity Fair Italy and now editor of “F” magazine, Maria Emilia Bonaccorso, the health editor and Livia Parisi, the health reporter at ANSA, who have been the three media people most loyal to Nicholas’ memory.

IMG_2772 SITO CONFERENCE, ROME 2016

At SITO conference (Rome, November 2016)

Thanks also to those branches I have visited of Aido (the volunteer group that works with donor families and recipients) with whom I have had some of the most enthusiastic meetings of my life — and especially the heroic and tenacious Piero Gallo at Aido Giussano — whose commitment has never wavered from the moment I met him — and to three of the most beautiful women in the world (Jamie Lee Curtis, Alessia Marcuzzi and Sophia Loren) all of whom have told me personally how deeply moved they were  by Nicholas’ story. Thanks also to Professor Natale De Santo and other professors of medicine, transplant physicians and nurses, to Giusy De Rosa, a teacher who I first met at one of the 31 schools that, all over Italy from the Alps to Sicily, were named for Nicholas, to Marco Galbiati (another father who lost a beloved son and joined us by collecting fifty thousand signatures after we began a national campaign to allow donor families to meet recipients) and the thousands — yes, thousands — of other people who have worked with us in the last 27 years! With such enlightened activists is it any wonder that Italian donation rates are now among the highest in the world?

Reg Green

 

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Meeting Recipients One Of My Most Fulfilling Moments

February 4th will be the 26th anniversary when my wife, Maggie, and I first met six of the seven people whose lives were transformed because they received the organs or corneas of my seven-year old son, Nicholas Green. Nicholas, an American boy, was shot in a bungled robbery on the Salerno to Reggio Calabria autostrada four months earlier while we were on a family vacation. The seventh recipient was doing well but was still recovering in hospital.

    Meeting them in Messina, in an event arranged by the Bonino-Pulejo Foundation, was one of the most fulfilling events of my life. (Video: https://www.youtube.com/watch?v=IzCKZBfPcGE).

Until then they were just names. Seeing them brought it home to me in the most vivid way how much devastation our simple decision had saved.

Meeting with all the recipients a year after the first time

Meeting all the recipients a year later
Courtesy of OGGI magazine (1996)

     Twenty-six years later five of the recipients are still living productive lives, although one is back on dialysis and another had to have a second corneal transplant.

      That meeting, however, would be impossible in Italy now. In 1999 a law was passed forbidding healthcare personnel to divulge any information about either organ donors or recipients. It had the best of motives – to ensure privacy — but has had the insensitive, some would say cruel, result that the two families can never have more than the most basic information about each other. They cannot even exchange anonymous letters.

   But now a bill has been introduced in Parliament to allow the two sides to write to each other, if both want to, or even meet, under conditions set by their doctors. Dr. Pierpaolo Sileri, Deputy Minister of Health comments, “The liberalization of contacts between recipients and donor families is a deed of humanity and civilization, a right and proper act”.

    This is an astounding change. When I started a campaign in 2016 to liberalize contacts, I could not get a single doctor or health care official to join me — only a friend from Rome, Andrea Scarabelli. We were so alone we became known as Don Quixote and Sancho Panza.

     But when we opened our campaign enough open-minded people in the media were able to visualize how comforting it is for donor families to learn what a difference their donation has made. Some of the largest newspapers published major articles, some of the largest television shows ran interviews, radio interviews reached drivers stuck in traffic. From being a subject that was as dead as the dodo, people all over Italy began to ask the health authorities: “If two families with as close a bond as this want to contact each other, why should some bureaucrat have the power so say no?” Marco Galbiati, of Lecco, whose 15-year old son, Ricky, died in 2017, collected 50,000 signatures to repeal the law.

     But we did not have to rely on emotion. In the United States, where contacts are not only allowed but have been strongly recommended for nearly thirty years, tens of thousands of families have written to each other and some of them have met. Clinically-documented reports show the great majority of these contacts have been therapeutic for both sides.

    After studying the evidence, each of the main health authorities — the National Bioethics Committee, the National Institute of Health and the National Transplant Center — spoke in favor of allowing contacts. The bill in Parliament embodies their recommendations.

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25th Anniversary of Nicholas death and Donation. An article on the Santa Rosa Press Democrat

Article by Chris Smith  – September 26, 2019 – Santa Rosa Press Democrat

Link to the article: https://www.pressdemocrat.com/news/10096291-181/smith-25-years-after-nicholas?artslide=0&sba=AAS

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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

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