A Life Everlasting

by Sarah Gray

  However, I liked to imagine that Thomas had gone to the “other side,” and that he was happy there. I imagined that Thomas did not pine for us, that he didn’t want us to make a big deal about his being gone. He wanted us to be happy, because he was. He had new friends on the other side, and we would see him later. That was good enough for me.

  Until it wasn’t.

  Before long, I started to feel like a piece of the puzzle was missing.

  ELI’S STORY

  Jodie and Jesse McGinley thought they had their lives figured out. They had good jobs, a nice home, a wonderful marriage that began with love at first sight—everything just as it should be.

  So when the McGinleys decided to start a family, there was no reason to think that this part of their lives wouldn’t go smoothly as well. Then Jodie suffered a miscarriage. They were heartbroken but determined to keep trying, and eventually they sought the help of a fertility specialist. Jodie endured months of painful treatments before she finally became pregnant, only to miscarry again. Beginning to think adoption was their only choice, the McGinleys decided to give in vitro fertilization a try. It worked. On Christmas Eve 2008, an ultrasound revealed that Jodie was pregnant with twins.

  The McGinleys were ecstatic, but given Jodie’s pregnancy history, they were immediately referred to a high-risk-pregnancy specialist at the University of Arkansas for Medical Sciences (UAMS) in Little Rock.

  For the next few months, the doctor kept a close eye on Jodie. Regular checkups and ultrasounds were joyful times, if not without a few scares. A complication during the first trimester resolved itself; another complication during the second terrified them, but they got past it. When it was time for the twenty-week ultrasound, at which they would be told the sex of the twins, Jodie and Jesse brought their parents with them to the appointment to share in the excitement.

  As the tech moved the wand over Jodie’s expanding belly, she said, “Baby A . . . it’s a boy. And Baby B, too!”

  “I always wanted a boy,” Jodie said. “It was a great moment,” she later recalled.

  But then the tech left the exam room to fetch the doctor. They thought nothing of it. The McGinleys and their parents were still celebrating the news when the doctor came in and put his hand on Jodie’s knee.

  “We have to talk,” he said.

  That’s when Jodie’s world stopped.

  Baby A had the most common neural tube defect: spina bifida, which affects approximately fifteen hundred babies each year in the United States. With this condition, the backbone doesn’t form properly in utero, so the spinal cord is exposed and often becomes damaged. Unlike with anencephaly, babies with this condition are not doomed to certain death, but it does result in physical and intellectual disabilities that can be anywhere from mild to severe, depending on where the opening in the spinal column is: up high near the head, paralysis of the legs can result, requiring the patient to use a wheelchair; lower down, the patient might have more use of the legs and get around with braces, a walker, or even no extra assistance at all. Incontinence is often a problem, and a catheter may be required as the child grows up, or even surgery in severe cases.

  If the spinal cord is exposed, the first step after birth is surgery to close the hole. Babies with this defect may also develop hydrocephalus, also known as water on the brain. Since infants’ skull plates are still separate, the accumulated water causes the head to swell and expand to make room. In addition to the disfiguring effect, the condition can also result in permanent brain injury, so a surgeon may install a shunt to drain excess fluid. (Babies have an advantage over adults when it comes to treating hydrocephalus: in adults, the skull is rigid, so there is no ability to make room for excess fluid, which rapidly leads to a severe pressure buildup that can cause brain damage and even death unless surgeons perform a craniectomy—the removal of a portion of the skull—to relieve pressure. The removed portion of the skull is often implanted in the patient’s abdominal wall for safekeeping until the swelling goes down and the skull section can be replaced.)

  Jodie worked with special-needs children, so when the initial shock of the diagnosis wore off, she realized she knew what to expect. They left the doctor’s office in tears, but full of plans for the two new lives that would be joining their family in a few months. “We knew this was a blessing, and we weren’t going to let that get us down,” Jodie recalled.

  On August 3, 2009, Jodie, at thirty-six weeks along, delivered her boys, Elijah and Walker, at UAMS. Eli, the baby with spina bifida, was the larger twin, weighing in at six pounds, three ounces; Walker was five pounds, seven ounces.

  Jodie was able to see her children and touch their hands before they were whisked away. As planned, Eli was placed on a ventilator and transported by ambulance to Arkansas Children’s Hospital (ACH), about two miles away, for evaluation. Walker was sent to the NICU at UAMS for observation. Jodie went to recovery.

  Over the next two days, Jesse traveled back and forth between hospitals to see Jodie and baby Walker in one, and baby Eli in the other. On the second day, Jodie and Walker went home, and Eli went into surgery as expected to close up the hole in his spine.

  And then an MRI of Eli’s skull revealed what would change their lives forever. Eli had hydrocephalus damage, a herniated brain stem, and a Chiari 3 malformation, which is fatal. Eli would never be able to breathe on his own.

  Jodie and Jesse had been anticipating bringing home one healthy child and one with special needs. It began to register that they would not be bringing home two children, but one.

  They might not need that second car seat.

  “Would he be eligible for donation?” Jodie asked. She didn’t know where the idea came from. No one in either her or Jesse’s family had ever received or donated organs or tissue. “I feel like the Lord just put the words in my mouth,” she recalled.

  A nurse practitioner offered to call ARORA—the Arkansas Regional Organ Recovery Agency. Reps from ARORA began research to determine whether he would be a suitable candidate. After a few hours, the McGinleys got the call verifying that Eli could make a gift of his aortic and pulmonary valves.

  Surrounded by their families and their pastor, the McGinleys were with baby Eli when he was taken off the ventilator. The doctors had said that Eli would die shortly thereafter, but he survived another thirty-one hours. The medical staff arranged for Eli to be transported back to UAMS so he could be reunited with his brother, Walker, in the NICU. As the two babies lay side by side in their incubator, the pink returned to Eli’s cheeks and a slight smile crossed his lips.

  Jodie got to hold her baby and tell him how much she loved him. In his final hours, as his oxygen level started to decrease, Jodie whispered in his ear, “Come back to me. Just come back to me,” over and over. She was asking him for reassurance that their decision to donate was the right one. Eli McGinley passed away in his mother’s arms on August 8; he was five days old.

  On Walker’s first birthday, Jodie contacted ARORA for an update. Eli’s heart valves had been sent to CryoLife, a biomedical company and tissue bank in Kennesaw, Georgia. Founded in 1984 with just six employees in a lab near the Hartsfield Airport in Atlanta, CryoLife was, by the time the McGinleys donated, at the forefront of cryopreservation technology, specializing in the low-temperature preservation of heart valves for children born with congenital heart defects. It is now an enormous, multinational company with more than five hundred employees and conducts business in more than seventy-five countries around the world. Somewhere in its sprawling headquarters, Eli’s valves were still waiting for a recipient.

  A few days later, Jodie was under the weather, which she attributed to being sad about the first anniversary of Eli’s death. Nine months later, on April 8, 2011, she gave birth to a little girl, Ellie Reese. Jodie calls her daughter her “rainbow baby.”

  Four months after that, on Walker’s second birthday, Jodie reached out to ARORA again and was told that Eli’s aortic valve had traveled north to a hospital in Maine, bu
t there was no additional information.

  It wasn’t until December 1, 2014, that the McGinleys finally received an email from CryoLife telling them that Eli’s aortic valve had been transplanted into a little girl the previous January. “I knew there was another mother out there who would not have to feel what I had felt. Just to know a piece of Eli was out there living took a big burden off my heart,” Jodie said.

  Jodie was busy preparing for a trip to Pasadena, where a floral portrait, or “floragraph,” of Eli would be included on the Donate Life America float in the 125th annual Rose Parade on New Year’s Day. He was only the second Arkansan ever to be so honored.

  As soon as she returned home from Pasadena, Jodie was at her computer to resume tracking down her son’s journey. Although fully understanding the rules of confidentiality surrounding transplant, Jodie wanted to know where the surgery had taken place, and anything else she could find out.

  Then she did something both clever and extraordinary: She Googled “television news anchors in the state of Maine.” News anchors know everything, she reasoned. In doing so she came across Kim Block, a longtime veteran anchor for Portland’s Channel 13 WGME six o’clock news. Block specialized in medical reporting, so Jodie fired off an email. “It was a shot in the dark,” Jodie said.

  The next morning, Jodie received the most astonishing reply. Not only could Block help her; Block was friends with Dr. Reed Quinn, the Chief of Cardiac Surgery at Maine Medical Center and an adult and pediatric cardiothoracic surgeon, whom she had met while on a trip with Doctors Without Borders. Block offered to reach out to him on Jodie’s behalf. Shortly thereafter, Dr. Quinn confirmed that he had indeed done the surgery and would let the recipient family know that the McGinleys would like to be in touch with them, if they were willing.

  Nick Cates and Kiara Gadbois-Cates, a couple from Standish, Maine, discovered at their twenty-week ultrasound that the little girl that Kiara was carrying had a hole in her heart. At thirty-two weeks, they learned that their daughter’s aortic arch would have to be reconstructed. At birth, baby Cambrie was taken straight to the NICU. They weren’t able to hold her until the morning of the surgery at Barbara Bush Children’s Hospital at Maine Medical Center. After about five excruciating hours, Dr. Quinn came out of the operating room and told them, “Our girl’s doing great.” He said that as part of the reconstruction procedure, Cambrie had needed to have her aortic valve replaced. “At that point it didn’t click that another baby had passed away,” Kiara said.

  “You know, a donor tissue—that means another baby died,” Nick said in the car on the way home. “That’s a piece of another baby.”

  Many months later, Kiara was on her way home from work when she received a call from Lori Hafner, Dr. Quinn’s nurse of twenty-four years, in the surgeon’s office. “I have a question for you,” Lori said. “The donor family contacted Kim Block, and Kim Block reached out to us. They’d like to meet you.”

  Lori arranged the phone call between the two moms.

  That first call “was hard,” Jodie said. “I was really choked up even thinking about talking to her.” She even texted Kiara beforehand to say, “I just want to find the right words to say before I call.”

  Fighting back her swelling sense of panic, Jodie went into her bedroom, sat on the bed with Jesse, and dialed. When Kiara answered, the first thing Jodie noticed was her Down East accent.

  “We were so excited and had so much to tell her. We were so emotional. We didn’t think this would ever happen for us,” Jodie said.

  For her part, Kiara couldn’t stop thanking Jodie and Jesse: “You saved our little girl’s life.”

  Two months later, in March, the McGinleys traveled with their two children to Maine to meet Cambrie. “I thought she was the most beautiful little girl I had ever seen in my life,” Jodie said. “She had really big, dark eyes and a head full of dark hair. I thought, Okay, Lord, you knew exactly what I needed to see. She was picture-perfect.” Jodie put her hand on Cambrie’s chest to feel Eli “pumping away in her heart,” as Kiara put it.

  It was remarkable that a baby boy who died one thousand miles away four years earlier had given a little girl he’d never met her future. What was perhaps more remarkable was the way the surviving children seemed to understand their bond. Walker was an energetic little boy who happily roughhoused with his little sister. But when Walker and Cambrie were together, he was extremely gentle with her—not just that he seemed to understand that she remained a physically delicate little girl, but that there was something special about her. “He’s so good with Cambrie. With his sister, it’s a different story,” Kiara said.

  And Cambrie put her chubby arms around Walker, hugged him hard, and told him she loved him. She was too young to understand their connection, but it appeared she felt it at some level.

  “How blessed are we as the donor family to be able to watch Cambrie grow up!” Jodie said. “I couldn’t ask for anything more.”

  Eli’s pulmonary valve was the kind of donation that can be safely stored in cryopreservation for up to five years. If a tissue is not requested by a physician in this time, Cryolife may provide these life-saving tissues for humanitarian use in the United States and abroad and forgo the standard reimbursement of recovery fees. The McGinleys learned that Eli’s pulmonary valve was shipped to the Dominican Republic in November of 2015 as a part of this program, called CryoKids. This valve was remarkably small, which made it less likely to find an exact size match for a transplant. However, a surgeon in the Dominican Republic was able to use Eli’s tissue as a patch on the heart of nine-year-old Luis Angel Mercado on April 15, 2016. A photo of Luis and his family was shared with the McGinleys.

  Six-year-old Walker looked at the photo of Luis and said, “Wow, how many times is my brother going to save a life? He’s a hero.”

  CHAPTER SIX

  Transplant Envy

  The 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 impre
ssed 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.