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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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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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“For 27 years, organ donation has been boosted by ‘the Nicholas effect'”

By Diane Daniel, American Heart Association News

Link to the article, AHA website: https://www.heart.org/en/news/2022/04/19/for-27-years-organ-donation-has-been-boosted-by-the-nicholas-effect

 

     Nicholas Green should’ve turned 35 this year.

Instead, a random act of violence claimed his life while he was on vacation with his family in Italy more than 27 years ago. The story captivated a worldwide audience. So did what happened next.

Nicholas’ organs and corneas were donated to seven people. His heart went to a 15-year-old boy and one of his corneas to a mother who’d struggled to see her baby.

Recognizing the opportunity to turn his family’s tragedy into a blessing for others, Reg Green, Nicholas’ father, began a quest that has changed countless lives. It’s been the source of a TV movie, the inspiration for a bell tower in California and the impetus for a campaign in Italy that could help connect more recipients with the families of their donor.

Now 93, Reg lives in La Cañada Flintridge, California, outside of Los Angeles. Although injuries have recently kept him from what used to be a daily hike in the foothills near his home, he can be found every day answering emails, making calls or writing articles in hopes of saving and improving lives via what the Italian media dubbed “the Nicholas effect.”

“It’s amazed me that it’s touched so many different people and has lasted all these years,” Reg said. “It’s a bigger thing than I could have possibly imagined.”

AHA ARTICLE April 2022

Screenshot of AHA article

The story begins in September 1994, when Reg and Maggie Green were driving on a highway in Italy. Their children, 7-year-old Nicholas and 4-year-old Eleanor, were asleep in the back seat of the family’s rental car.

Thieves thought their car was carrying jewels. They shot through the back window. Only one bullet hit any of them. It lodged at the base of Nicholas’ brain.

Over the next two days, doctors at a hospital in Sicily tried saving the boy. Meanwhile, the sensational story – a young American shot by highway robbers in Italy because of a case of mistaken identity – rapidly generated headlines throughout the country and beyond.

When doctors declared Nicholas brain-dead, Italians poured out their grief, from people on the street to the prime minister.

Maggie and Reg decided to donate Nicholas’ organs and corneas. They went to four teenagers and three adults.

If one little body could do all that, Reg thought, imagine how many could be helped if more people became organ donors?

“I knew we’d been handed an opportunity,” said Reg, who had earlier worked as a journalist in London and was then writing a financial newsletter. “I saw this as the biggest news story of my life. We had the chance to change the direction of organ donation.”

Back home in California’s Bay Area, Reg and Maggie established The Nicholas Green Foundation to support organ and tissue donation worldwide.

In Italy, the impact “was almost instantaneous,” Reg said. “Donation rates went up 30% in the fourth quarter of 1994 and rose every year for the next 10 years until they were triple what they had been before he was killed.”

Reg was soon giving interviews and publishing opinion articles in countries as diverse as India, Australia and Venezuela. He and Maggie started traveling anywhere they were invited to promote their cause. (Maggie stopped traveling as much in 1996, when she and Reg had twins, Laura and Martin.)

“People around the world were realizing, some for the first time, the power of organ donation,” Reg said.

The momentum took many forms.

In 1995, sculptor Bruce Hasson volunteered to build a bell tower dedicated to children who have died. Italians donated more than 140 bells, with the centerpiece blessed by Pope John Paul II. (In 2018, Nicolas’ sister Eleanor was married at the site of the sculpture.)

In 1998, the TV movie “Nicholas’ Gift” aired, starring Jamie Lee Curtis. Earlier this year, Curtis posted on social media a remembrance of “the privilege of portraying Maggie Green” and cited the Nicholas effect. She called organ donation “honoring, humbling and haunting.”

In the early days of the nonprofit, Reg received a letter from a 21-year-old university student in Rome named Andrea Scarabelli. He wanted to help.

Scarabelli began translating articles published in Italy into English for the Greens. He later translated Reg’s books, articles and speeches into Italian and even arranged media tours all over Italy.

“Reg and Maggie really changed the attitude of a nation,” Scarabelli said. “Now organ donation is seen as a normal thing in Italy.”

When Nicholas’ organs were donated, the Greens were tremendously moved by getting to meet the recipients. One recipient was a 19-year-old woman who nearly died the same night as the boy; she’s now the mother of two, including a boy she named Nicholas.

However, laws in Italy changed, no longer facilitating contact between organ recipients and their donor’s family. Starting in 2016, Reg and Scarabelli began pushing to give donors and recipients opportunities to meet. A bill to that effect has been introduced by a group of legislators.

Maggie praised her husband’s tireless efforts.

“I’m a willing participant, but he’s always been the engine,” she said.

Maggie said that while her family has celebrated the life and grieved the death of Nicholas with the world, they have their private remembrances as well.

“People outside the family remember the day he died,” she said. “We remember his birthday.”

 

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Indian girl (6) shot, parents donate organs

Dr. Deepak Gupta, Professor of Neurosurgery at the All India Institute of Medical Sciences at Delhi, who headed the team that transplanted the organs of six-year old, Rolly Prajapati, has added a comment to ‘An Illiterate Family in India Gives the Educated World a Lesson’ (please see this article on the blog on May 3, 2022.)

He says, “I hope there will be some official recognition of the extremely rare decision by her parents: organ donation rates in India are among the lowest in the world. If only the Prime Minister would honor the family for their willingness to put their acute grief on one side until after they put in motion the process that saved the lives of people they knew absolutely nothing about, it would act as a beacon to encourage many other families to follow suit. Meanwhile, every year thousands of Indians, many of them young, some of them infants, die when one donated organ could have saved them.”

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An Illiterate Family in India Gives the Educated World a Lesson

A mother and father in India, neither of whom can read or write and work wearisome hours for poverty wages, have just given the world’s educated a lesson in simple humanity. When their six-year old daughter, Rolly, was shot as she slept alongside her father, at whom the bullet was probably aimed,  Harnarayan Prajapati (39) and Poonam Devi (37) donated her organs to save other children. They had never heard of organ donation until Dr. Deepak Gupta, professor of neurosurgery at the AIIMS medical center in Delhi, who was in charge of her case, told them about it when Rolly was declared brain dead on April 29. They agreed because they did not want other families to face the bleakness that had enveloped them. Organ donation is almost non-existent in India where the grinding poverty of the great majority of families leaves little energy at the end of a day to think about anything other than the basic routines of living.

Rolly and siblings

Rolly is in the center with two of her five siblings, Karamveer on the left, Khushi on the right.

Even among the growing middle class, defined as those earning more than $25,000 in purchasing power comparable to the United States, organ donation is widely viewed as something unnatural. Even more than in other countries Indians fear that if they indicate they are willing to be donors, the doctors will not try as hard to save them when they are seriously injured. To all of them, the Prajapatis’ decision comes as a lesson that people in the most tragic situation need not turn inward in grief and despair but can transform life for multiple strangers. In rural India where rigid divisions are so traditional, the willingness to accept that the recipients can be of any caste is even more difficult. This small girl’s story should be a lesson to those who say they are in favor of organ donation but, like so many, are unwilling to go through with it when the decision is about one of their own family.

WhatsApp Image 2022-05-03 at 2.58.03 PM

Rolly’s parents, Hamarayan Prajapati and Poonam Devi

P.S. When I heard from Dr. Deepak Gupta about Rolly, I asked him to give this message to her mother and father. I offer it to any other family who has had to face the loss of a loved one.

To the family of little Rolly:

     I am the father of a seven-year old American boy, Nicholas Green. who was shot while we were on a family vacation in Italy and whose organs and corneas my wife, Maggie, and I donated to seven Italians, four of them teenagers. I am writing to you in hopes that I can offer a little solace for your crushing loss. For now, I expect that you can think of little else but how bleak and meaningless everything seems and how even the most routine task causes a stab in the heart because she is not with you. But in time I hope you will come to see how you have not simply transformed the lives of the recipients but how you have given inspiration to a world crying out for hope. You have given your daughter’s life a higher significance than  you could ever have foreseen. I imagine her saying: “I’m very proud of you.”

With great affection, Reg (and Maggie) Green

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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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Link to Jamie Lee Curtis movie available

Nicholas’ Gift, the television movie in which Jamie Lee Curtis plays the mother of seven-year old Nicholas Green, who was shot on a family vacation in Italy, can be seen online by clicking this link:  https://www.justwatch.com/us/movie/nicholas-gift.

Just Watch: Nicholas' Gift movie

The movie, based closely on the true story, traces the car chase that led to the shooting and the decision of the boy’s parents to donate his organs and corneas. It shows the anguish of waiting for a transplant, the trial of the killers and the Greens’ poignant meeting with the young heart recipient and his family.

Making of the movie

The Green family in Rome for the making of the movie, Nicholas’ Gift, starring Jamie Lee Curtis. Left to right: Martin, Reg, Gene Wexler, Maggie, Laura, Eleanor. (Martin and Laura are the twins born twenty months after Nicholas was killed.Eleanor was two years younger than Nicholas. Gene played Nicholas in the movie.)

The movie, for which Jamie Lee Curtis was nominated for an Emmy, has been seen by 100 million people worldwide. There is a small charge to view it.

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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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Article on “IntechOpen”: ‘The results Are Positive in the Great Majority of Cases…’

IntechOpen, which describes itself as ‘the world’s largest publisher of online open access papers’ recently published a paper by Reg Green titled:

“The Results Are Positive for Both Sides in the Great Majority of Cases When Organ Donor Families and Their Recipients Decide to Communicate with Each Other, US Experience in Tens of Thousands of Cases Shows”

intech open video

Click this link to watch the video: 28E6021C-146D-40E7-B9F4-193CCC570762.mov

Here is the abstract and a link to the full article.

Abstract:

Many countries restrict the ability of organ donor families and their recipients to communicate with each other; many make it virtually impossible. These restrictions were made for the best of reasons, mainly because of fears that one side or the other might suffer psychological damage. In the United States, however, for more than 25 years, communication has been strongly encouraged if both parties want it and under conditions set by their medical advisers. In literally tens of thousands of cases, a great majority of those contacts, which can range from the exchange of anonymous letters to face-to-face meetings, have proved to be therapeutic for both sides and significant problems have been very rare. Indeed, it is the families who are kept apart who may suffer most. The author is an American journalist, whose seven-year old son was shot on a family vacation in Italy whose organs and corneas were donated there. He and his wife have met all seven recipients and everyone, he says, has benefited.

https://www.intechopen.com/online-first/the-results-are-positive-for-both-sides-in-the-great-majority-of-cases-when-organ-donor-families-and

For more information contact Reg Green at rfdgreen@gmail.com

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