A Life Everlasting (9 page)

T
he Washington Regional Transplant Community—a federally funded organ-procurement organization, or OPO—has, like many OPOs around the country, a dedicated donor-family support program that can continue for two years after a loved one's gift has been made. WRTC sends regular mailings about grief and loss, and proffers invitations to bereavement seminars and support-group meetings. These meetings are not exclusive to donor families, however; it is part of WRTC's charter to include anyone in the community who would like to attend, donor family or not.

In October 2010, Ross and I were invited to WRTC's Donor Family Grief Retreat. The retreat was held in a large conference room at the WRTC offices, making the atmosphere almost like a business meeting, with fancy sandwiches, snacks, and a Keurig coffee machine.

At the beginning of the retreat, the group leader asked us—there were about twenty-five attendees—to introduce ourselves and talk about whom we were grieving.

It was an eye-opening roll call:

“My name is Linda. My daughter, Jennifer, died of a gunshot wound. Her organs saved the lives of six people. We received a few letters from the recipients.”

“I'm Sondra. My daughter, Felicia, died last year. She was a single mom, and she leaves behind her son, Daniel, who has special needs. I am taking care of him now, and he really misses her a lot. We all do. We donated her heart valves. She saved one life that we know of so far.”

“Hi, everyone. I'm Marian. My daughter, Jessica, died in a car accident. She was twelve years old. We donated both lungs, her liver, and both kidneys. She saved the lives of four people.” Marian's mother paused to compose herself. Then she said, “We received two letters of thanks.”

I froze. But the stories continued.

“My name is Dave. My baby, Hannah, died in childbirth. My wife couldn't handle it, and six months later she committed suicide and donated tissue. So I am grieving two people.”

As the stories continued around the room, I was in awe. I had never in my thirty-six years met one person who was involved in a transplant, and now I had just heard from twenty-five on the same day. I was impressed that these everyday people had directly helped save so many lives. And they received letters of thanks? It gave me the chills.

But when it was my turn to talk, the story didn't seem to compare. Ross felt the same way; somehow, perhaps because we'd known our loved one was going to die for months before it happened, and he'd been so young, our loss seemed less significant
than those of the people who had lost spouses and older children who left behind a legacy of years rather than days. Also, we were the only ones in the room who had donated to medical research rather than to a life-saving transplant. All these people had the knowledge that they helped save a life; our effort was still theoretical.

“I'm Sarah,” I said, haltingly, “and this is my husband, Ross. Our son Thomas died of a birth defect—it's called anencephaly—when he was six days old. His eyes and liver were donated for research, so he didn't . . . save any lives. But maybe he helped a study. Or something.”

As I finished speaking, I found myself experiencing the most peculiar sensation: transplant envy. These people knew—or had the option to know—where their loved ones' donations ended up. I realized that if we had donated to transplant, we, too, might actually learn about the results of Thomas's gifts. But since we donated to research, the results would be much more mysterious.

Unknown, even.

Once the introductions were over, the counselor gave us each several exercises to do. We were to write letters to our loved ones, and we were tasked with writing letters back to ourselves from our loved ones. I wrote to Thomas and told him that I loved him and hoped he was having fun in heaven, and that if I won the lottery I'd know he was looking out for me. (It really would be an especially notable miracle, given that I never buy lottery tickets.) And then, as Thomas, I wrote back to myself to give myself a break: I told me that I didn't deserve what had happened, and acknowledged that I was doing the best I could.

Then the counselor passed out squares of aluminum foil with the instruction to make something out of it. I folded mine into a hat. Ross crushed his into a ball.

“Now crumple it up then try to make it flat again,” the counselor said.

After a minute in which the only sound in the room was a faint crinkling as we followed instructions, he said, “Who preferred the part where you created something?”

I raised my hand.

“And who preferred flattening it out?”

Ross raised his hand.

“Some people like to create something new, and others feel more comfortable when they know what the specific goal is.”

While it was grief that brought us together, there was also laughter. It was liberating to talk about death among strangers and not feel awkward. One man—whose brother was accidentally shot and killed—said that he found himself infuriated by the things people complained about in their lives on the social media he followed: “
My train was late,”
people wrote, or
“My computer broke.”
Or
“My barista messed up my coffee order.”
Losing his brother had made him realize how little these things mattered.

After hearing all these stories of loss, I felt lucky that Thomas had been just a baby with a disease. We hadn't relied on him to pay the mortgage or to pick anyone up from school, and we didn't face the chaos of emotions that result when someone takes their own life.

Through this shared experience, I felt that these people “got” me and what I was going through. All the normal small talk didn't seem necessary. I felt a level of comfort among these strangers that I hadn't always felt with my friends and colleagues since Thomas's death. I instantly cared about them and felt that they also cared about me.

Dave—the man whose story of an infant death followed by a suicide broke my heart—approached me during a break.

“I just want to tell you how sorry I am that you lost a twin. That must be so hard when you see the other boy.”

And that's how Dave—a stranger, and a man who'd lost his child
and
his wife—told me he felt sorry for me.

Later, as we prepared to leave, one of the donor parents took me to one side and said, “It's really great that you donated to research. Who knows how many people your son's donations will help?”

“Yeah, who knows?” I said.

And I thought, no really, I would never know. Unless I got a letter, as some of my peers had.

WRTC, like all OPOs, protects the privacy and anonymity of participants. But that's not the whole story. After a transplant takes place, the transplant recipient and the donor's family can, if either party wishes, write to each other in care of WRTC. WRTC will forward the letter to the addressee along with a note that tells the recipient that if he or she isn't ready or willing to read the letter, he or she should either put it aside or return it to WRTC.

“We rarely get them back,” said Lisa Colaianni, WRTC donor-family advocate and employee of more than twenty years.

If both parties decide that they would like to meet, WRTC facilitates the get-together (once both sides have signed a waiver form in accordance with the Health Insurance Portability and Accountability Act of 1996, that is). And those meetings can lead to bonds that last a lifetime.

Some people—on either side—are not interested in corresponding or meeting for a variety of reasons. One reason I heard from a recipient is that they are afraid that the donor family will not think they are “good enough” to receive their loved one's organs.

But some of the meetings are simply magical.

One such donor family–recipient meeting took place at LiveOnNY, the OPO in New York City.

LiveOnNY's Donor Family Services Aftercare Department organized a meeting between the family of a young Dominican man who had died of a cerebral hemorrhage and his heart recipient.

The donor left behind young children and a common-law wife. At the time of the donation, the common-law wife was not in the “order of priority” to authorize donation, and the donor's mother provided consent for the donation. (The order of priority in New York State has since changed, and since 2009 domestic partners have a say in the donation decision.)

The heart recipient was Dr. Anthony DiMaria, an internist at a local hospital in New York. After his transplant, the middle-aged doctor wrote to the LiveOnNY aftercare program, saying he wanted to contact his donor's family because he felt it was necessary, if possible, to thank them in person for the “generous gift of life that they had given me.”

On the day of the meeting, the donor's six brothers and their wives and partners, all their kids, and the donor's mother gathered in a conference room—each excited and nervous to meet the man who had received their loved one's heart.

When Dr. DiMaria walked into the conference room where the family was waiting, the donor's mother was already standing with her arms open, waiting to receive him. She gathered Anthony to her and said, “
Mi hijo vive
.”

My son lives within you.

Soon, the rest of the family converged into a huge group hug.

“She said she wanted to feel the heart beating,” DiMaria said. “I had my stethoscope.”The family took turns listening to his heartbeat.

Then, it was time for a photo. As the donor family crowded around Dr. DiMaria, one brother playfully asked him if he had started to like spicy food. Another brother, himself a kidney transplant recipient, said, “Now we are seven brothers again.”

To this day, Dr. DiMaria keeps in frequent contact with one the brothers and sends flowers to the mother and her family on Mother's Day and Christmas.

“I tell people I am Italian-American with a Dominican heart,” Dr. DiMaria said, “and how lucky I am to be alive.”

Virginia mother and kidney transplant recipient Amanda Bisnauth-Thomas was able to meet her donor's family, too, though in this case a whole gang of people had been saved.

Amanda had developed unexplained kidney failure that had become a life-threatening condition. Eventually, after an agonizing wait, Amanda received the kidney of a teenager, nineteen-year-old Jami Interiano, who had been a gunshot victim. After the donation, Jami's family wanted to meet his organ recipients. The day Amanda met Jami's family, she also met the patients who received Jami's other organs: Chuck Campbell, a car salesman from Delaware, who had received Jami's lungs; George Ortega, a limo driver from Florida, who had received his heart; and Kelly Coles, a nurse from Upper Marlboro, Maryland, who had received his other kidney. Together, they learned about the teenager who had saved their lives—a Dallas Cowboys fan who loved '80s music.

As reported in
Arlington Magazine
in December 2015, Amanda still maintains a relationship with the other organ recipients, especially Kelly Coles, the recipient of Jami's other kidney. They refer to each other as “kidney sisters.” Jami's family now sees Amanda as one of their own, and Amanda reports with a laugh that she is “expected to take sides in family arguments.”

I loved hearing about what transplants could do for people,
but I couldn't help but also wonder where it left families like ours. There was no mechanism in place to track results of donations that go to research rather than for transplant. It was clear from the outset that I might never be able to know for sure what became of Thomas's donation.

So I studied the outcome letters we had received from the various organizations.

The first one was a handwritten note from Heidi Cope at Duke, thanking us for participating in the anencephaly study. It was dated March 25, four days before Thomas died.

The next came from WRTC on April 6, a week after Thomas's funeral:

Your son's liver was not able to be transplanted, but we are pleased to tell you that it was recovered for medical research, and will be included in a study on liver cell preparation for the treatment of severe metabolic disorders in newborn children.

The intention of the study is to confirm that liver cell preparation can replace the missing enzymatic activity in the liver, which often results in self-intoxication of the body, lifelong brain dysfunction with mental retardation, and early death of newborn children.

This medical study will use your loved one's liver cells to raise the enzymatic activity in the liver of the sick child until they have gained sufficient body weight to undergo a donor liver transplantation procedure, which can take place at the age of 12 to 18 weeks. Thank you for this invaluable contribution to this important research.

Your son's corneas were unable to be transplanted; however, we are pleased to tell you that they were recovered
by Old Dominion Eye Foundation and provided to National Development and Research Institutes, Inc. for a very special education research project.

Old Dominion Eye Foundation was one of the oldest and most respected eye banks in the country. Whereas OPOs like WRTC perform organ and tissue recoveries, eye banking staff sometimes perform the eye recovery and work alongside the OPO professionals in the operating room.

When I looked up National Development and Research Institutes, mentioned at the end of that letter, I didn't understand the connection, and a Google search initially didn't make things clearer.

It turns out that that was because it was a typo: the organization is actually called the National
Disease
Research
Interchange
, and it serves as basically the Match.com of donation, connecting available diseased and healthy tissue for research with the researchers that need it. NDRI was founded in 1980 by a woman named Lee Ducat, whose son was diabetic. She had wanted to help scientists studying diabetes find a cure, and found out that what they needed were human pancreases. Researchers had been finding their own from local hospitals up to that point, but NDRI established a national network of sources to provide pancreases so that researchers could focus on their work instead of focusing on the often-fruitless search. When scientists investigating other diseases learned of NDRI's work, they started asking the organization to help them with their tissue needs as well.