The Nicolas Green Effect

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

Nicholas, a magical little creature, whose teacher said he was the most giving child she’d ever met, was seven years old when he was shot 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 still remember in vivid detail 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 those seven recipients, four of them teenagers, whom we met a few months later.

None of the four 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 seven years old. He went through one dangerous operation, which failed, then another, which also failed, a third, a fourth and then a fifth. None of them worked. His family, buoyed up each time, then cast down again, 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. Hollow-cheeked, a frightened look always on his face, unable to study, almost confined to bed, 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 scared of having another.

Eventually, however, his parents, as fearful as he was, but seeing no alternative, persuaded him 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 and the family agreed to a donation.

That family, as it happened, was ours and 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 and 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 with the help of the powerful drugs they all take 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 fulsomely.

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 her final coma with liver failure on the day Nicholas died, quickly 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 so that literally thousands of people, many of them children, are alive who would have died.

Yet donations there and everywhere else still fall below the need and every day eighteen people on the waiting list in the United States alone – including one in six children aged five and under -- die for the failure of one organ.

On average each donation produces three or four life-saving organs, besides tissue such as corneas to prevent blindness, bone to avoid amputations and skin to heal painful burns. With that much at stake I often wonder how any other decision is possible.

Certainly we feel Nicholas, who thrilled to the thought of doing honorable deeds, would have approved. I have a story I like to tell about him. 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.

(This story was first published in the Los Angeles Times)