«Why was Hillary always the bridesmaid and never the bride?» James Reston Jr. asks in Fragile Innocence: A Father's Memoir of His Daughter's Courageous Journey (Three Rivers Press, 2007), his account of his third child's life.
Born in New York, Hillary was bright, social, and talkative until nearly two years old. Then, in the spring of 1983, everything changed. A raging fever seized her, followed by convulsions, uncontrollable behavior, and epileptic seizures. For three agonizing years, her brain sustained irreversible damage. Severe disability had become part of the Reston family. But the trials continued. After Hillary's brain came her kidneys, poisoned by medication. Daily dialysis complicated an already complicated life, until after years of suffering, a transplant finally arrived—restoring her smile.
But those years of waiting for that transplant were long. Impossibly long.
Because when we ask whether some sick bodies deserve saving less than others—whether they merit it less, merit it later, merit it only if something's left over—the answer in many American states is yes. They do.
Doctors had predicted a three-year wait for a compatible kidney. It took eight years, and a change of state. In Maryland, where the family originally lived, five years (1993–1998) passed in futile waiting. A few times it seemed Hillary might finally have a match. But each call announcing a compatible kidney came with the same bitter addendum: the child was second or third on the list. Inevitably, after a night of hope, another call arrived—the first candidate had gotten the organ. Once, she was even admitted to the hospital, only to be sent home five hours later.
The Restons couldn't accept it. Questions burned. As years passed, the father grew convinced something sinister was happening. His doubt became certainty when Hillary broke every record: she had been waiting longer than anyone else. Could others be jumping ahead of her because she was handicapped? Was that why no kidney came? «The years went by, Hillary was fading day by day, but nothing happened. Maybe someone had put an asterisk next to my daughter's name?»
Then came the discovery. Each American state maintains its own transplant waiting lists, its own rules, its own priorities. And some of those lists, rules, and priorities implied that the precious organ would be wasted on her. An organ distribution system that «stinks of corruption».
«After five years of suffering and rage, I read an article in USA Today that suggested, between the lines, that waiting lists in the Midwest moved faster. The United States is divided into eleven transplant regions. Ours—with ten organ procurement centers—covered Virginia, North and South Carolina, Kentucky, and Tennessee. Region 8—covering Iowa, Missouri, Kansas, Nebraska, Colorado, and Wyoming—had only four centers, the largest in Iowa City, with a wait of less than two years.» They had no choice. They moved.
In December 2000, Hillary's parents brought her to Iowa City. They were immediately impressed by the facilities. After a careful evaluation, the doctor said he would accept her on the list: «It's the humane thing to do.» The humane thing to do? A list of human beings? «No doctor in Washington had ever framed it that way.»
Finally, the right call came at 5:30 a.m. It was Barbara Schanbacher, transplant coordinator at the University of Iowa Hospital: a kidney was available. Someone else's death had become another's salvation. «For the past year, our daughter had barely smiled. Now she couldn't stop. (…) Suddenly we understood how much she had suffered. Suddenly, miraculously, she was free from pain.»
The temptation to discriminate, sadly, reached people close to us geographically too. A powerful case emerged exactly ten years ago (April 2010) when doctors Nicola Panocchia and Maurizio Bossola (Gemelli Hospital, Rome), along with psychologist Giacomo Vivanti (University of California), published a denunciation in the American Journal of Transplantation. They exposed «absolute contraindications» for organ transplant eligibility set by the Veneto region's guidelines for psychological evaluation in organ donation and transplantation (March 2009). In Appendix A, among thirteen listed causes, there were irreversible brain damage, intellectual disability (defined as an IQ below 50), and recent suicide attempts. While most regions list only severe psychiatric illness as an exclusion criterion, Veneto's guidelines effectively excluded mental illness altogether. The scandal was enormous. When recounting the story of Stefano, a boy with intellectual disability who was on dialysis and then transplanted, Giuseppe Remuzzi, a transplant specialist, asked in the pages of Corriere della Sera: «What does intelligence have to do with the right to live one's own life, each with the talents one has?»
The Veneto regional government later issued (June 3, 2010) an implementing circular regarding Appendix A that no longer listed absolute contraindications. It added instead that the document aimed «to guarantee, under all possible conditions, the highest level of care possible.» In that specific case, things worked out for the best. But the underlying problem remains. Because—as the COVID-19 pandemic has shown—the temptation persists to sort people into first-class and second-class citizens.
Fragile Innocence closes with a grand celebration of Hillary's twenty-first birthday. From across the country, the family gathers everyone she has known—teachers, nurses, doctors, social workers, neighbors, her siblings' friends. It is a magnificent surprise. As each one enters, Hillary's eyes grow wider with wonder. Twenty-one years of «full humanity» are being celebrated in the Reston home. The hope is that society might truly recognize this full humanity. For the author, it represents «the last frontier of civil rights.»