Category Archives: Useful tools

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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From Wisconsin Association of Talented and Gifted: “Nicholas Green Distinguished Student Award”

Twenty years ago Maggie and I began offering the Nicholas Green Distinguished Student Award to primary school students who displayed the characteristics they saw in their own son: love of learning, integrity, kindness.

The award, which included a check for $100, was offered through the state associations of teachers of gifted and talented students to one student in every  participating state. It was financed by the money the Greens had put aside for Nicholas’ college costs and when the money ran out, some states continued the project. Here is the announcement we received recently from the Wisconsin Association for the Talented and Gifted.

wisconsin NGA 2021

https://www.watg.org/awards–scholarships.html

Perhaps your state’s association of teachers would like to know more.

Reg Green

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Manufacturers Fight the Virus in Unlikely Ways

The speed with which manufacturers, ranging from world’s largest corporations to boutiques, have adapted their production lines to turn out medical equipment to fight the coronavirus, has surprised laymen like me even in this most surprising of years. London-based 58 Gin, faced with the tight restrictions on bars, is using its reserves of alcohol to make hand sanitizer. Sharp, the Japanese electronics giant, is producing test kits. The Britain’s Royal Mint, instead of coins and precious metals, plans to make two million visors for medical personnel.

The Royal Mint has been producing more than 100,000 medical visors per week. (Photo by ‘The Independent’)

It reminds me that the boy who got Nicholas’ heart witnessed an even more magical adaptation. He was 15-year old Andrea Mongiardo of Rome. One of his doctors, Professor Stefano Marianeschi, now head of pediatric cardiac surgery at Niguarda hospital in Milan wrote to me to say that before the transplant Andrea was “struggling to survive, grossly under-nourished, only 27 kilos (60 lbs.) of body-weight and twice a week had to be admitted for albumin and calcium infusions.”

Happier days: Andrea, 7 years old, leader of the gang of four, with his cousins Valentina, Marta and Marco, all 5.

After the transplant and a period of recuperation, he lived a more or less normal life for 23 years. In time, he got a job and even played soccer. He told everyone he used to have a patched-up old jalopy inside him.  “Now,” he said, “I have a Ferrari.”  When he finally died in 2017, it was because of respiratory failure brought on by cancer. Nicholas’ heart, Andrea’s Ferrari, worked faithfully to the very end.

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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

Organ Recipient Saves the Life of Woman Who Saved Hers. The story of Lisa Barker

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)

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