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These children were competing only because at one time they
were so desperately ill that they needed a transplant - a
new liver or kidney - to keep
them alive. Without that new organ, none had any real chance
of a normal life. Some, perhaps all, would already be dead.
One of the competitors, Giulia Stoppa, a gentle charmer
of 7 years, was yellow at birth from a killer liver disorder.
The first child of the 39-year- old
mother, Miriam Stoppa, she was put into a special unit in
another hospital.
Miriam saw her only twice a day to nurse her. Even now,
her eyes fill with tears as she remembers the loneliness and
fear.
Another little skier, Bigna Fischer, now 11, was a frightening
shade of blue in her first days and, as she grew, so did the
complications.
"She was sick all her life before the transplant,"
recalls her mother, Ingeborg. "She couldn't breathe.
I had to carry her everywhere."
Despite these living testimonials to the miracle of organ
transplantation, donations continue to fall short of the need
just about everywhere in the world.
On the average, 16 Americans - many of them children, some
just babies - die every day while waiting for a transplant.
Think of the agony of families inching their way along on
those slow-moving, ever-lengthening lists of
patients.
On the ski slopes, a look at the happy parents and kids
with their whole lives ahead of them offered one more proof
of the mighty power given to
people faced with the decision to donate.
Miguel Bellon, 15, who had the fastest time - 36 seconds
for each run - got his new kidney from his mother. She radiates
happiness at having been able
to save her child, as though it were she who had received
the gift of life.
The others, more typically, had to wait and wait until some
other family, having lost one of their own members, had enough
love of humanity to make
their gift to the world.
Since their transplants, these children in the snow have
experienced ups and downs as their bodies try to reject the
alien organ.
When she was 3, Maya Herzig's new liver failed, terrifying
her family. Six days later she had to be given another.
But with the help of powerful drugs, and their own determination,
these plucky little creatures, one of whom received a transplant
only six months ago, are now better athletes than most children
of their age.
"They're all fighters," one mother said.
That seems logical for kids who have struggled so hard just
to stay alive.
-- -- --
I was emotionally involved in this race, which was conceived
and worried into life by Liz Schick, a 38-year-old British-born
mother of two. She received a new liver almost three years
ago and, like so many recipients, has a burning desire to
pay back to society the donation that changed everything for
her and her family.
The race was called the Nicholas Cup in honor of my own
son. When he was 7 years old, he was shot in the head in Italy
in a botched robbery. His organs were donated to seven very
sick Italians. A few days before he was killed, we had been
with him in this very mountain range, and the memories
came crowding back.
That was six years ago. Today all seven of his recipients,
most of whom would have died by now, are back in the mainstream
of life.
To mention just one of them: Maria Pia Pedala, then 19,
was dying of a liver disease the night Nicholas was shot.
She has since had two babies, a boy and a girl, two whole
lives that would never have existed - and so she called the
boy Nicholas.
Organ donation rates in Italy have more than doubled in
the six years since Nicholas' death. There are always multiple
causes for such a change, but it
seems clear that thousands of people who would have died are
alive today because of his story.
-- -- --
The Nicholas Cup was a prelude to the Winter World Transplant
Games at Nendaz, in the Valais region of Switzerland, with
competitors from 16
countries covering a full range of events, including slaloms,
snowboarding, curling and cross-country. Only those who have
had a transplant can take
part. For most of them, exercise of any sort was once out
of the question, the idea of competitive sport a fantasy.
Some could scarcely raise their head
from the pillow.
The games, held every two years in summer and winter, are
the brainchild of Dr. Maurice Slapak, a pioneering transplant
surgeon from Britain. He
wanted to demonstrate that transplants, far from being simply
a way to prolong life, can restore patients to fully productive
lives. These operations are no longer experimental. They are
everyday events in hospitals all over the world, and success
rates are in the 80 to 90 percent range.
As they hurtle down the snowy slopes in the Transplant Games,
the contestants, old as well as young, conclusively prove
Dr. Slapak's point.
Geoffrey Finnigan, a Briton now 73 years old, has a heart
that came from an East Berlin woman 17 years ago.
"Ich bin ein Berliner," he says, giving President
Kennedy's famous Cold War battle cry, "I am a Berliner,"
a new dimension.
In his slalom he missed a gate, stumbled and fell.
"I was a bit worried," he said afterward. "At
my age you can easily break a leg."
"What about your heart?" I asked. "Weren't
you worried about that?"
"My heart?" he said, surprised. "I never
gave it a thought."
Some of the competitors were born with severe defects. But
for others the onset was alarmingly swift, a warning that
any of us, however fit, might need a transplant one day.
Liz Schick ran five miles in London's Hyde Park the day
before she started to have severe stomach cramps.
"You have a rare liver disease," the doctors told
her. "Without a transplant you won't live long."
At the games she won two gold medals.
Karl Handschuch, 63, was a lieutenant colonel in the German
air force. He ran marathons and coached sports until kidney
failure "took all my strength
away." That was 22 years ago. Since then, he has attended
all these games and has built up a business with 150 employees.
"It's given me an entire
second life," he says.
As one of the contestants was talking about his transplant
of more than 20 years ago, his voice suddenly dropped. He
said that a few months ago his
kidneys had begun to fail. I looked quickly at him and then
away, but not before I saw the tears in his eyes. This was
not self-pity.
"My sister says she will give me one of her kidneys,"
he said quietly. "She's 65, and I've told her she must
think about it very carefully. I don't want to
think about it. It's decided,' she told me."
Few patients are so fortunate. For most, someone else must
die so they can live. That's why these games in the snow are
more about gratitude and
humility, not about winning.
-- -- --
The potential pool for organ donations is very small. That
is why every addition is so important.
Aside from close relatives like Karl Handschuch's sister,
most donors in major transplant operations are like Nicholas
- brain dead, their organs kept
working for a time by machines.
In developed countries, all opinion surveys show that the
great majority of people say they favor the concept of organ
donation. But in those lonely
hospital rooms, where a loved one has just been pronounced
brain dead, only a minority of families find they can go through
with it.
Because each decision in favor of donations produces an
average of three or four organs, families can save three or
four other families from the
devastation they are going through or, alternatively, condemn
them to a lifetime of sorrow.
The brain dead, of course, are not the only donors. Death
from other causes can allow donation of precious tissue, such
as heart valves, corneas, bone
to prevent amputations and skin to cure severe burns. But
there is a chronic shortage even of these donors.
With so much at stake, what possible debate can there be
about what is the right thing to do?
-- -- --
Many reasons are put forth for low organ donation rates,
but one key is that brain death generally results from a sudden,
unexpected event - a road
accident, a stroke, a blow to the head. The family arrives
at the hospital to find someone they love, who was alive and
well a few hours before, is now
dead.
They are asked to make a major, irrevocable decision then
and there about a situation they have never seriously considered.
It is just too much for most people. Overwhelmed by grief
and shock, they say 'no.'
Yet, I cannot believe the consequences are what they would
want.
I remember a transplant nurse telling me she was on duty
one night when a small boy was brought in, dying from a road
accident. When the time came,
she took a deep breath and asked the parents if they would
donate. They refused, angrily, at what they saw as a crass
intrusion on these sacred
moments.
The nurse said she understood, the bottom had fallen out
of their world. But all she could think of was that on the
third floor of that same hospital
another boy, of just about the same age, was also dying that
night, and did die, because the heart that could saved him
never arrived.
I often think of that little boy, and how close he came
to being saved, and about those distraught parents who, if
they had thought about it earlier when
death was just a distant concept, might have made a different
decision. Can I ask you, who are reading this article, to
think about it now?
-- -- --
As for our slalom contest, little Giulia won the Nicholas
Cup although, as it happens, the 7-year-old with a donated
liver took far longer than the fastest
skiers. A complicated handicapping system made sure everyone
had an equal chance.
That's typical of transplant events, where even coming in
last is a cause for celebration. Everyone who shows up, they
like to say, is already a winner.
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