A Life Everlasting

by Sarah Gray

  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.

  What started as Ducat’s dream has transformed into a major resource for the scientific community. (She turned NDRI over in 2012 to Bill Leinweber, who came to the organization with more than twenty-five years’ experience advocating for medical research.) NDRI now offers a catalogue of more than seven thousand biological specimens—collected from donors from more than 160 organ-procurement organizations, tissue banks, eye banks, and hospitals—and distributes nearly thirty thousand specimens annually to over five hundred academic, pharmaceutical, biotech, and medical-device organizations.

  Donors don’t even have to be deceased. NDRI also facilitates donations of tissue from surgery, such as tumors, or diseased organs such as lungs and livers that have been replaced with transplants.

  The next week, I received two more letters. The first was forwarded to me from Immanuel Rasool, the manager of Research Donations at WRTC, who had received it from Cytonet in Durham, North Carolina.

  Please extend our gratitude and condolences to the family of your donor, a baby boy, for their willingness to give someone else the Gift of Life through research.

  Also, please thank your staff for everything they did to provide the opportunity of liver research to the baby’s family.

  The process gave us a viability of 52.2% with 12.94 billion cells counted. The cells were not of the best quality and the viability was borderline. There were areas noted on the liver of pooled blood that looked like bruising. The remaining tissue was utilized in our lab for additional testing and research to assist in developing a better outcome for future cases.

  Once again, thank you to everyone involved at WRTC and the hospital and especially the family of this precious baby boy.

  The next letter, from Old Dominion Eye Foundation, didn’t include any additional information, just a sincere thank you and some grief materials. And the next, from WRTC in May, included a butterfly pin as a token of appreciation and remembrance.

  And that was it. No more information, no more updates about what my son was doing, about whether his donations were having or would have an impact. So I did what I guess I was expected to do.

  I got on with living.

  Callum was an easy baby: he started sleeping through the night as soon as I went back to work. I think Ross and I were more laid-back than many first-time parents, perhaps because of what we’d gone through in the pregnancy. Problems that our fellow parents complained about—the cost and scarcity of quality day care, breast-feeding, pediatrician appointments, and nap schedules—didn’t even register as real issues to us. We had a beautiful, healthy child with a completely formed skull. We were freaking delighted.

  One of the things we worked hard at doing was maintaining our pre-baby lifestyle as much as possible while simply easing Callum into it. So, we brought him with us when we went out to dinner or traveled; by the time he was two years old, he had flown across the Atlantic and back three times to visit Ross’s family in Scotland. Ross still played on his rugby team and went to the pub at seven o’clock in the morning to watch Glasgow Celtic and the Scottish national soccer team. I picked up my graduate school studies at American University; I had four classes to go to get my master’s degree in public communications.

  In one class, we had been asked to give a presentation about the challenges of surveys; I did mine on my experience of filling out the survey for the Duke anencephaly study. Using PowerPoint slides that included photos of Thomas and Callum, I explained to the class what had made me a motivated participant (it meant my child’s death was not in vain) and where the pitfalls had been (embarrassing questions; the burden of things like getting blood draws; needing favors from busy medical staff). It turned out the exercise of making my experience the subject of a presentation was therapeutic; it was the first time I was able to discuss what had happened at a remove. It was starting, very slowly, to become a piece of my history rather than as something I was going through every minute of every day.

  During those first few months, I made the mistake of thinking that because the worst thing had already happened—my child had died—I was immune from anything bad happening again, at least for a while. But life doesn’t work like that.

  When my favorite coworker announced she was leaving her job, I went home and cried. I guess that from the outside it might not seem like a big deal, but it felt enormous to me at the time. When I pulled myself together, I realized that life would continue to throw me curveballs. Life was not singling me out for the bad, or the good. It was just life. I remembered some passages from When Bad Things Happen to Good People. Mother Teresa, one of the nicest people I could think of, still had bad things happen to her. Being nice, or having one terrible thing happen to you, doesn’t provide an invisible force field that shields you from the normal ups and downs of life. You can’t control things that way.

  My family was devastated when my stepfather, Bob, unexpectedly died of a heart attack in December 2010, only nine months after Thomas passed away. We’re not a very religious family, and we didn’t belong to a church, so we asked Phil Brooks to perform the service, and Bob was buried in the same cemetery as Thomas.

  As we approached the one-year anniversary of Thomas’s death, I found myself caring more and more about what had happened with his donations. I decided to contact Old Dominion Eye Foundation to see if they had any follow-up information, so I sent them an email. I got the following response:

  —————Forwarded message—————

  From: Christina Jenkins

  Date: Wed, Feb 9, 2011 at 12:56 PM

  Subject: RE: Contact Request From ODEF Website

  To: Sarah Gray

  Ms. Gray,

  Thomas’ donated eyes were used as part of research program at the Schepens Eye Research Institute. . . . [Schepens is] involved in many valuable research studies conquering diseases of the eye. We all know someone who has been touched with these debilitating diseases. Please take comfort in knowing that countless individuals are being helped with his donation and that their renewed vision is a legacy left by your son. I off
er my deepest sympathies as you approach the one-year anniversary of Thomas’ passing.

  Sincerely,

  Christina Jenkins

  Once I’d finished reading the note, I Googled “Schepens,” and was delighted to see that the institute was part of Harvard Medical School.

  Thomas Ethan Gray had gotten into Harvard.

  On the first anniversary of Thomas’s death, we visited his grave. When we buried him a year earlier, his small plot had been on the outer row of this small cluster of lost babies. Because his tombstone was not ready at the time, a brass stake with a typed paper sign had designated his space. He had been the newest addition to his row.

  Now, a year later, his permanent tombstone was in place, and the grass had grown over some, but newer graves surrounded his, each with a new brass stake. For some reason, I expected that Thomas’s grave would be the last. It still seemed so recent to me. How is it that so many more babies had died since last year?

  Ross and I touched Thomas’s tombstone, brushed off the dust, and left him some flowers. A breeze made the chimes in the nearby trees sound softly, as though to acknowledge our presence. With the tinkling sound all around us, we turned and walked away.

  A few weeks later, we attended WRTC’s annual donor-family gathering, which is held every spring in memory of those who have “given the gift of life.”

  We had been invited to contribute a square to the annual WRTC donor quilt. The tradition had begun in 1995 as a memorial to donors. The quilts hang in the WRTC offices, but they also travel to community meetings, health fairs, press conferences, and informational presentations around Washington, DC, Maryland, and Virginia. Thomas’s quilt was the fifteenth such quilt, and it would be unveiled at a service at the National Presbyterian Church in Washington, DC. His square comprised several photos of Thomas and Callum and one photo of Thomas solo, Ross’s left hand covering his tiny chest. (Revered newsman Tim Russert, who died suddenly of a heart attack in 2008, was also a donor, and has a square on WRTC’s thirteenth quilt. His gave a shout-out to his beloved Buffalo Bills and to Meet the Press, the program he’d moderated on NBC for many years.) The gathering was attended by donor families, recipients, transplant surgeons, WRTC staff, and other people from the transplant community, and was followed by a lovely reception.