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

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

Article by Reg Green

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

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

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

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

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

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

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

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

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

Five of the recipients are still alive.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

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

 

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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

The Photos That Have Marked An Era (Facebook page)

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

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

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

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

(March 14, 2019)

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

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My Daughter Got Married Thinking of Nicholas

From “OGGI” magazine – Italy – March 8 2019

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

Article on the Italian magazine ‘OGGI’

 

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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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BBC: Ten Unmissable long reads from 2017

From BBC World Service:

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

 

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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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A Proven Healing Experience For Bereaved Families

Four-year old Grant Thompson plays with Micki Parker, whose daughter Addie died when she too was four years old from complications of juvenile diabetes. Addie’s organs were donated and her liver saved Grant’s life. Says Micki: “I wanted to know everything about her recipients: did they like pets, were they funny like Addie was, did they like to snuggle up to their Mom after bath-time? Grant’s parents wanted to meet me too and reached out first. Amazingly, I was able to meet him in what was one of the most fulfilling events of my life. Knowing he is so healthy and happy has helped me deal better with the pain of losing Addie.”

(Photo by Alexa Citro)

In the United States communication between the two sides under the supervision of the patients’ medical advisers is strongly encouraged because it is therapeutic for both sides in the large majority of cases. Communication can be anything from the exchange of anonymous letters to face-to-face meetings,

The meeting was arranged by the Donor Network of Arizona, the organization chosen by the US Government to oversee organ donation throughout the state of Arizona.

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