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A Child's Legacy of Love from the Los Angeles Times

Only the Races Are Downhill from Update May/June, 2003

A Child's Legacy of Love

Recently I strolled through a park in Rome with Andrea Mongiardo, a 23-year old Italian, whose heart once belonged to my own son.

My son, Nicholas, a magical little creature, whose teacher said he was the most giving child she'd ever met, was 7 when he was shot seven years ago in a botched robbery on the main highway south from Naples. Two young men, mistaking our rental car for one they thought was carrying jewelry from Rome to stores in southern Italy, fired on us, hitting Nicholas in the head. Two days later he was declared brain dead.

I can remember that sunlit hospital room, with the doctors standing in a group in the corner, leaving my wife, Maggie, and me alone to absorb their terrible news and the thought that came with it: "How will I ever get through the rest of my life without him?" Never to run my fingers through his hair again, never to tickle him or hear him say "Goodnight, Daddy."

We sat there numbly for a few more moments. Then one of us - we don't remember which but, knowing her, I'd guess Maggie - said, "Now that he's gone, shouldn't we donate the organs?" and the other said "yes." And that was all there was to it. Although we are not a gloomy family and still laugh a lot, every morning when I wake I know life will never have the sparkle it had when Nicholas was alive. But we have never had a moment's regret about our decision -- and if we had had any regrets they would have been banished by the first sight of the seven organ recipients, four of them teenagers, whom we met a few months later.

None of the four teens could have expected to live much longer, two of the adults were going blind and the third, a diabetic, was in pitiful shape, her whole central nervous system disintegrating, scarcely able to see, unable to walk without help.

Andrea was all too typical. Born with a severely deformed heart, he stopped growing when he was 7. He underwent a dangerous operation, which failed, then another, which also failed, then a third, a fourth and a fifth. None of them worked. His family was in despair.

He became so sick he could scarcely walk to the elevator in his apartment building. Every other day he went to the hospital for a transfusion of albumin, the protein that kept him alive. He was hollow cheeked, a frightened look set on his face. At 15 years old he knew he couldn't last much longer.

The turning point came in March 1994 when the doctors at Rome's Bambino Gesu (Baby Jesus) Hospital brought up the idea of a transplant. "Only a new heart can save him," they told his parents. At first he said no. After five failed operations he was understandably reluctant to have another.

But he was persuaded to try. He was put on the waiting list and began the long, cruel, double-edged wait that could only end successfully if someone else died. Seeing him now, and knowing what would have happened to him, I know that if we had made a different decision, and shrugged off his problems and those of the other recipients as none of our concern, neither Maggie nor I could ever have looked back without a deep sense of shame.

The operation was much more difficult than a normal transplant because of the acute deformation of his heart; he hung between life and death. At length, however, it was a resounding success. The new heart turned out to be a perfect match. "It might have been made for him," Lidia, his mother, told me, a tear in her eye since, being a mother, she never forgets the little boy it came from. Andrea has had his share of ups and downs, as his body, like that of all transplant recipients, tries to reject the new organ. But, all in all, he is thriving. He plays soccer, works with an uncle who manages condominiums and finds deep satisfaction in the simple things of life. Looking at him in a crowd you would never pick him out as the one who spent half his childhood in hospital. We would have done anything to keep Nicholas alive, of course. But that wasn't an option. So standing next to Andrea in the park, wasn't horrifying or depressing or awkward. We've never thought of Nicholas living on in any literal way inside him or the others but, as I put my arm round his shoulders, I did feel a kinship to Nicholas' pure heart, beating steadily, and a flow of satisfaction, knowing that even in death he continued to give so fully.

We first met our recipients and their families just a few months after the shooting, when our grief was still agonizingly raw. But that meeting, which both us had to steel ourselves to attend, was explosive. A door opened and in came this mass of humanity, some smiling, some tearful, some ebullient, some bashful, a stunning demonstration of the momentous consequences every donation can have. We now think of them as an extended family. We've watched the children grow and leave school and get their driver's licenses and the adults go back to work. One of them, 19 year-old Maria Pia Pedala, in a coma with liver failure on the day Nicholas died, bounced back to good health, married and has since had a baby boy. And, yes, they have called him Nicholas.

In Italy schools, squares and the largest hospital have also been named for him. Better still, organ donation rates have almost tripled. Yet they still fall far below the need.

I have a story I like to tell about Nicholas. On our way to Italy a few days before he was killed, we played a game in which he was a Roman soldier returning home, after years heroically guarding the frontiers. When you get to Rome, we told him, you'll be famous. Poems will be written about you, streets will be named for you, you'll get a gold medal.

It was only a game. But it all came true. With this difference: that Nicholas conquered not by the force of arms but by the power of love and that, of course, is much stronger.

Reg Green

(First published in the Los Angeles Times)

Only the Races Are Downhill

Recipients celebrate and compete at the Nicholas Cup

By Reg Green

Bormio, Italy. The setting was unlikely: a hotel lobby in the Italian Alps where a family of Muslims from Israel was sipping coffee with two Jewish Israeli families. They were talking quietly, as friends do, about the kind of personal experiences that transcend race, religion and politics.

What brought the families together was even more unlikely: one by one, five of their children had fallen so ill that only the organs of five other people who had died suddenly had saved their lives. They met in the Schneider Children's Memorial Center near Tel Aviv, whose mission statement allows for no racial discrimination between patients and where the kidneys and livers were transplanted to the sick children.

"We were one big family at the hospital," says Judy Abramovich, one of the Jewish mothers. Listening to the hushed conversation and watching the smiles of the children, as the snow fell steadily outside, the ethnic killings that could threaten any of them seemed very far away.

They were in Italy for the unlikeliest reason of all a series of ski races for children who have received a new organ, 38 of them from 18 countries. At one time all had been desperately ill. Some could scarcely lift their heads from the pillow. Others were given only a day or two to live.

The idea that these children, whose ages ranged from 5 to 16, could play a competitive sport, let alone race down an icy 30-degree slope 6,000 feet up in the mountains, would have seemed preposterous. Many, including the children of the Qais family from Israel, had never been on skis before.

The event they were here for was the Nicholas Cup, named for my own son, 7-year-old Nicholas Green of Bodega Bay, Calif., who was shot in an attempted robbery in Italy in 1994 and whose organs were donated to seven Italians. Since then organ donation rates in Italy have almost tripled and thousands of people, who would have died, are alive.

Organized this year by the WTGF

The competition was started as an act of thankfulness two years ago by Liz Schick, a British mother of two, whose life had also been saved by a liver transplant. This year it was organized by the World Transplant Games Federation, an affiliate of the International Olympic Committee, and by Aned, the Italian transplant group. For the first time the competition was held in conjunction with races for adult organ recipients, the oldest of whom was 72.

The federation was started 25 years ago by a pioneer transplant surgeon, Dr. Maurice Slapak, struck by the fact that one of his patients, whom he had transplanted only three months earlier, easily kept up with him when they were out jogging. For Slapak, very fit and a former Cambridge University tennis and hockey player, it was a seminal moment. Since then, the federation has organized transplant games around the world every two years.

"I wanted to show in the most memorable way that most organ transplants restore the recipients to full health," he says. "Most of these children can do anything normal kids do."

To this day the Qais family have no idea why three of their young children, Tauba, Hassan and Mohammed, were afflicted by a life-threatening disease. But they are profoundly grateful that each child was given a cure that at one time was unimaginable.

It's not always plain sailing, however. After years of waiting, Judy Abramovich's son, Michael, now 12, received a liver and a kidney. Within weeks both failed, and his chances of finding two more donors plunged toward zero. Against all odds, he was saved a second time by two more bereaved families. Meanwhile, however, his father, Simcha, died at the age of 39 after waiting in vain for a pancreas and kidney. Judy, now a 45-year old widow, has to cope alone.

Another Jewish boy, 15-year-old Anthony Boruszek, has had three new kidneys. When the first gave out, his father George donated one of his. Crushingly, it failed too.

"I'd been so sure I could help him," George says, the weary helplessness of those days still evident. But three months ago, after six agonizing years, the family of a Jewish man killed in an Arab terrorist attack donated the kidney that is now keeping Anthony alive and a liver that went to an Arab.

Families who've already triumphed

Many other families at the games with cheerful, energetic children have gone through the mill. Cancer of the abdomen ruined one of the kidneys of 8-year-old Nicholas Powell from Australia; the remaining kidney is only 30 percent functional. A bone marrow transplant saved his life, but both hips are pinned and both eyes have had a lens implant. Because of resulting complications, he cannot be sedated and for even relatively minor procedures needs a general anesthetic: more than a hundred of them in one 12-month period.

Young Thomas Rex from the United Kingdom was born with only one kidney and that, his mother says, was "the size of a pea." It failed entirely when he was six weeks old and, until he was almost three, he was kept going only by being hooked up to a dialysis machine.

By contrast, only the tiny urethra valve Adam Phillips was born with wasn't working properly. But it was sufficient to back up the urine and destroy his kidneys.

For some children, a virus that at first seemed no more serious than a common cold eventually crippled their hearts. As one mother puts it, "At any time any one of us might need a transplant."

Most patients who have that need must wait until some family, quite unknown to them, put their own grief aside long enough to make their gift to the world. But in almost every country in the world, the supply falls short. In the United States every day 18 people on the waiting list, some painfully young, die.

Donations of a kidney or a part of the liver are increasingly being made by generous-hearted people, who have given up hope of finding a match for one of their own family. Richard Salick, 53, of Cocoa Beach, Fla., has had three transplanted kidneys, all of them from his brothers: as each failed another brother came forward.

Neophytes transformed

These are unusual problems, however. Tens of thousands of these operations are performed every year around the world, and the success rates are in the 85-90 percent range, as this year's Nicholas Cup again confirmed. Except for Anthony, whose transplant was too recent to allow him to compete, every one of these formerly terminally ill people was fit and spirited enough to participate in downhill races which for the experienced adults reached 40 miles an hour or in punishing cross-country events in which in one race the winner skied 11 miles in an hour.

In one week of training the neophytes who had never been on skis were transformed and, in some cases, had already developed the irritating insouciance that marks winter sports enthusiasts. All fought to win they wouldn't be alive if they didn't but everyone knew the competition was not about the fastest times but about a medical wonder and the human spirit that can transform tragedy into triumph.

"Every day is a miracle for us," says Piero Fresi of Italy, a kidney recipient. His eyes cloud with tears as he hugs his cherubic six-year-old daughter, Alessia, who, if things had gone differently, might never have been born.

I have a particular affection for Alessia. In a special cross-country race for friends and family members, she is the only competitor I beat.

The next Nicholas Cup, open to children who have had a transplant, is tentatively scheduled for 2005.

(Reprinted from Update, the United Network for Organ Sharing magazine, May/June 2003)


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