The Nicholas Effect

(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.

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.