Category Archives: In the news

“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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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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Their Favorite Murder

Would you believe it? There’s a podcast called “My Favorite Murder” — and it is the sixth most-listened to podcast out of the thousands available. It focuses on true crime stories and the title, of course, is a way to catch attention: it evidently succeeds because Wikipedia estimates that last year it had 25 million downloads a month!

Recently they did a 13-minute segment on the killing of Nicholas and, despite the show’s title, they dealt with it responsibly and, except for some details, accurately.

screenshot podcast nicholas

They even asked listeners who had an interesting organ donation story to tell to contact them at myfavoritemurder@gmail.com. Write to them if you have such a story. If they use it you will have a huge audience, most of whom have never thought seriously about organ donation.

Here is the link:  https://myfavoritemurder.com/318-one-spiritual-moment/. Our story begins at the 17th minute (I’d skip the chit chat that goes on until then) and ends at the 30th.

Reg Green

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Canada’s “Most Tenacious Donor Advocate”

George Marcello, Canada’s most tenacious advocate for organ donation, has died aged 65, after a long illness made worse by his refusal to slow his relentless campaign to raise awareness of the worldwide shortage of donated organs. In the 27 years that I have been traveling the world for the same cause, I have never met anyone who gave more of himself to organ donation. Working mostly alone, he took up the cause when his own life was saved in 1997 by a donated liver. He walked thousands of miles across  Canada carrying a torch — the Torch of Life, he called it — attracting a following in whatever community, large and small, he walked through. One of those who wanted to know more was Pope John Paul II who blessed the torch when he gave an audience to George in Rome in 2001. 

George Marcello

                             (Photo by ‘Step by Step Organ Transplant Association’)

Among his many initiatives was bringing together the family of Palestinans, whose son was shot by mistake by an Israeli soldier and whose organs went to Israeli children, and the mother of a British Jew who was blown up by a Palestinian terrorist, one of whose kidneys went to a Palestinian. I don’t know anyone else who would have thought of that powerful lesson for humanity and had the iron determination to make it happen.

For more please see https://www.canadahelps.org/en/charities/step-by-step-organ-transplant-association/ 

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

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August 4, 2019 · 2:14 am

Article and photos from 2018 KODA conference in Seul, South Korea

September 2018 – Speech and conference at the 2018 KODA (Korea Organ Donation Agency) Global Forum

 

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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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My son died in 1994 but his heart only stopped beating this year

Article by Harry Low – BBC

May 2017

Link to the complete article: http://www.bbc.com/news/magazine-39422660 

Link to the Facebook post: https://www.facebook.com/bbcnews/posts/10154643441412217

Link to BBC Mundo – Spanish: http://www.bbc.com/mundo/noticias-39815787

Link to BBC Brazil – Portuguese: http://www.bbc.com/portuguese/geral-39818220

 

 

 

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“How ‘The Nicholas Effect’ changed (in better) the history of transplants”

Article published on “Il Corriere della Sera” (Italy)

corriere-della-sera-9-2-2017

To read the complete article, go to:

http://www.corriere.it/salute/17_febbraio_09/cosi-l-effetto-nicholas-ha-cambiato-in-meglio-storia-trapianti-5cbd3fe6-eeb6-11e6-b691-ec49635e90c8.shtml

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