Amelie Trice was celebrating her 30th birthday at a dinner with her husband, Stephen, and close friends when the call came.
“Across the table he yelled ‘Amelie, they got a heart for Troupe.’ I didn’t say goodbye,” she said. “I picked up my purse and walked out of the restaurant.”
As Stephen sped to the airport, Amelie, an intensive care unit nurse, remembers a feeling of numbness wash over her. With a volunteer pilot waiting when they arrived at Brookley Field in downtown Mobile, the family made it to Children’s Hospital at Egleston in Atlanta in time to give their son a second chance at life.
The Trices’ son, Troupe, had been seriously ill for more than a year and on a waiting list for a new heart for about a month. He was born smaller than normal, weighing just 4 pounds 3 ounces at birth. At 18 months, he contracted viral pneumonia. After that, he was in and out of the hospital, sometimes for as long as a week.
His liver grew to more than twice its size. Some mornings, his eyes were swollen shut. By age 3 he could only ride his bike the length of two houses before tiring out. Specialists at two different hospitals searched for the cause of his ailments. His mother researched his symptoms, too, desperate to uncover what was wrong. Finally, after dozens of tests ruled out cancer and other diseases, a diagnosis of restrictive cardiomyopathy, a rare form of congestive heart failure with no known cure, came from a doctor in Birmingham.
When Troupe’s condition worsened, the family did more research then sought more aggressive options. They took Troupe to a cardiologist in Atlanta. After several more tests on his heart, Troupe was put on a transplant list June 1, 2007. He waited just a month, receiving a new heart in the pre-dawn hours of Saturday, July 1, 2007. Within a month, though, that heart began to fail, too, leaving his parents desperate for a miracle.
Now, almost seven years after almost losing their oldest child, the Trices are steeling themselves for something they likely could have never predicted. Their 3-year-old son, Henry, also has been diagnosed with restrictive cardiomyopathy, a disease that strikes less than one in a million children. The tiny boy, who at 18 pounds weighs about half of what a typical child his age would, was placed on a waiting list for a heart transplant about three months ago in February. Doctors estimate it could take up to six months for another heart to become available. So now, the Trices are again living with cell phones at arm’s reach, making plans with several volunteer pilots to fly them to Atlanta at a moment’s notice, and anxiously awaiting the call that could give Henry his own second chance.
The Trices talked about their experience recently, trying to describe some of the complex emotions that come with benefiting from organ donation. They hope sharing their story will bring more awareness to the process as they reach out to others living through similar struggles. Amelie, who as a nurse has cared for hospice patients and cardiac cases, also put some of her thoughts on paper. Here is how she described the harrowing hours surrounding Troupe’s first heart transplant:
“I will never forget giving consent, or him sleeping in my arms after his sedation as I rocked him. The anesthesiologist came and gently took him from me, carrying him away like he was his own. I was crushed. I could barely get up and walk to the waiting room. I remember following my husband, his parents and my mother down a hallway and I could feel my knees buckle with every step. I knew what was happening. As I walked, I was waiting for my baby’s chest to be opened, his heart and blood vessels to be cannulized, and put on cardiopulmonary bypass, and his heart to be cut from his chest to be analyzed by a pathologist somewhere in a lab, gone, all while hoping that the donor heart would take up where his own heart had failed. At the same time, the pain of knowing that as I walked to the waiting room unable to stop the tears … I knew that somewhere a mother and a family was grieving for their baby. The thought that some stranger somewhere was never going to be able to hold her baby ever again, but after this was over, I would, it was overwhelming.”
It would be nearly four weeks before Amelie was able to hold her son, or feel whole again, she said. Unfortunately, his body began rejecting the new heart. “A month after the first transplant, Troupe started going back into congestive heart failure,” his mother said. “Troupe was dying. His donor heart was failing. He was on dialysis because his kidneys had shut down, on the ventilator and multiple drugs for sedation, blood pressure, heart function.”
Troupe’s Atlanta cardiologist, Dr. William Mahle, warned not all donor hearts are a good match. And while rare, transplanting a second heart is sometimes the only option. Early on, Mahle also told them that getting a transplant is like starting a clock, because you never know how long the new heart will last. Research shows transplanted hearts don’t last as long as a native heart. Donor hearts are matched based on weight, blood type and antibodies, among other things. Troupe needed a heart from a child who weighed about 20 pounds.
Amelie said the experience of needing a second donated heart for her son was surreal, explaining that she felt “the guilt and the grief would be multiplied” if Troupe had to have a second donor heart. “How many miracles can a person ask for?” she wondered. On Aug. 2, 2007, Troupe was placed back on the transplant list for Children’s Hospital at Egleston, at the top. “He was literally lying in the bed dying,” his mother said.
Just two days later, a call came in the middle of the night. Another heart had become available. At 2 a.m. on Aug. 4, 2007, a transplant team rushed to prepare Troupe for another heart surgery. “I held his hand and we all walked back with him as they wheeled his bed quickly to the doors of the OR,” Amelie recalled. “We said our goodbyes. I felt like I was being choked as they took him away.”
Troupe did much better with the second transplanted heart, though there were still complications that led to agonizing moments when they feared he wouldn’t make it. Eventually, though, their boy began to thrive. Almost two months after he received his second donor heart, the Trice family left Atlanta and returned to Mobile with Troupe.
Their new routine included lists and schedules for medications, doctors’ appointments at every turn, heart catheterizations, and a feeding tube for Troupe to gain weight. “We realized very quickly that we would never be able to pick up where we left off,” Amelie said. “I felt like a different person completely. My priorities had changed over night. I was consumed with fear, fear of losing him, and it has never gone away.”
Amelie said Troupe’s life expectancy is based on an average of other heart transplant recipients which is from 6 to 10 years. Typically, children who receive heart transplants need another one later. They also must remain on a series of medications for the rest of their lives.
While Stephen was able to return to work in sales in Baldwin County, Amelie left her job as a hospice nurse.
“I felt I no longer had the emotional strength to support my patients and their families,” she said. Instead, she found a three-day-a-week job as an operating room open-heart surgery nurse, giving her more time with Troupe. She now works nights in a local intensive care unit. The family slowly adjusted to their new normal. Troupe’s feeding tube was eventually removed as he began gaining weight on his own. Though his parents held him back a year because of a battle with pneumonia, he was eventually able to start kindergarten.
Three years after Troupe’s transplants, when he was 6 or so, the couple decided to have another baby. “It was a very difficult decision and one that we didn’t take lightly,” Amelie said. “We are the only ones in our families, even through multiple generations, that have children with any health issues.”
The Trices said their doctors believed Troupe’s restrictive cardiomyopathy had been caused by a viral infection that had severely damaged and scarred his heart muscle. “We didn’t think it was genetic,” Amelie said. After Troupe’s original heart was removed, doctors told them because of the scarring it likely wouldn’t have lasted another month without intervention.
Their second child, Henry, was born prematurely by Cesearean section at 32 weeks. He weighed 3 pounds and 1 ounce, but otherwise was deemed normal by doctors, Amelie said.
“I had been followed very closely during my pregnancy and he was examined very closely for any signs of heart problems,” she said. “We even established him with our cardiologist locally. Because of our experience, I was very paranoid and always looking for similarities” between Troupe and Henry.
The Trices said Henry was a different baby all around. He ate better than his older brother at the same age and didn’t experience the same number of health problems Troupe had endured. At 18 months old, Henry had an upper respiratory and ear infection that stretched across a series of weeks, his mother said. Following that illness Amelie noticed that Henry’s liver felt enlarged. After visits to his pediatrician and cardiologist revealed nothing conclusive, Henry was referred to Troupe’s cardiologist in Atlanta.
“They did an echo(cardiogram) and decided because he was Troupe’s little brother,” Amelie said, “that we should do a heart (catheterization) and check his heart pressures and function.” Those tests revealed Restrictive Cardiomyopathy, but at a less severe stage than Troupe’s when he was first put on the transplant list.
The Trices were shocked by Henry’s diagnosis. He’d never been sick the way their older son had. But with the devastating news also came hope, they said, because Troupe is living proof that miracles happen every day.
Because his case was described as less severe by doctors, Henry was prescribed oral medications last year, and began a series of heart catheterizations to measure heart function and pressures, among other things. As month’s passed, Henry’s heart function became progressively worse. His appetite decreased. His liver remained enlarged, and gaining weight has become a constant struggle.
Otherwise, Henry likes to do things other 3-year-olds do. He loves Batman and building with Legos, he likes to swordfight and watch YouTube videos of trucks and dirt and construction zones. The Trices haven’t tried to explain Henry’s illness to him just yet. “He doesn’t understand he is sick,” Amelie said. “He flips out if I try to take off a Band-Aid.”
On Valentine’s Day this year, Henry was added to the heart transplant list at the Atlanta hospital as a Status 1b, just like his brother before him. That means he is not at the top of the list yet, which is reserved for patients in the gravest conditions. He’s also not near the bottom. A 1b places him in the middle, his parents said.
Stephen and Amelie said they struggle to give both their sons a sense of normalcy while they wait for the call, a situation that is anything but normal. Because Henry is on the transplant list, he can’t travel more than 45 minutes away from Mobile or Baldwin County, or somewhere that’s not close to Atlanta.
“I try not to worry about whether we will get one in time, and just continue on day to day,” Amelie said. “It feels like we are waiting for our lottery number to hit the jackpot. There is hope that your one-in-a-million odds will work in your favor, or it may not. It is a day-by-day, minute-by-minute emotional balancing act. We try to keep moving forward with our lives and yet we are in limbo.”
While they wait, the Trices have made meticulous plans for family to keep Troupe when Henry travels to Atlanta for his transplant surgery. Amelie, a self-described worrier, has written out detailed instructions for Troupe’s daily care, warning family members who will keep him to take coughs and sniffles seriously.
They recently sold their home and moved in with family, bracing for the flood of medical bills that come with transplants. Following his treatment more than six years ago, Troupe’s expenses topped out the lifetime maximum on each of his parent’s health insurance plans, they said. During that time, family and friends rallied to raise money for the Trices so their house note and utilities were paid for during the months they lived in Atlanta.
“We didn’t have to come home and file for bankruptcy,” Amelie said, noting how grateful they were for the financial and emotional support.
Money was raised through the Children’s Organ Transplant Association (COTA) website where donations are accepted to help with the cost of care for children who need organ transplants and might not otherwise be able to afford the related expenses. At first, Troupe had his own page. Now he and Henry share a page on the COTA website: Http://cota.donorpages.com/PatientOnlineDonation/COTAforTroupeT/ And while transplant related expenses are estimated to be about $80,000, according to the web site, that figure could easily soar if complications arise.
The Trices said they are incredibly thankful, too, for the parents who allowed their children’s organs to be donated so that their own children might live.
“And it was all because they had the piece of mind to think of saving others, at the moment they received news no parents ever wants to hear that their child was essentially dead and being kept alive by machines,” Amelie said. “To this day, I live with a complex ball of guilt and grief. I grieve for that family’s loss and the guilt that I benefited from someone else’s pain.”
Amelie said she and her husband have found some solace in sending letters to the families of both children who gave their hearts so that Troupe might live. Others who allowed their children’s organs to be donated have told them that receiving such letters helped give them closure and some comfort. The Trices sent letters to the families of both donors, Stephen said, because they felt like the first heart was just as big of a gift as the second: “We wouldn’t have gotten the second one without the first one.” They have never heard from the donor families who lost their children.
Today, Troupe is a third-grader at Mary B. Austin Elementary School in Mobile who loves soccer and swimming.
“He is getting very smart about his own care,” his father said. “He’s very cautious.” For example, Troupe is quick to wash his hands before meals. He knows not to eat off someone else’s plate and doesn’t drink after others.
A few years ago, Troupe asked his parents what happened to his heart donors and wondered why they weren’t spared.
“I told him they didn’t do anything wrong,” Amelie said. “They had some sort of accident which hurt them so bad it killed them and their Mommies and Daddies loved them so much they wanted to let them live on by helping kids who were sick. Now they are in heaven watching over him.”
Troupe celebrated his 10th birthday April 4. He will celebrate his seventh “Heart Day” this summer, his parents said, noting that their oldest son doesn’t hesitate to show people the long scars that mark his chest. “He wears them like badges of honor,” Amelie said. “He knows that two children died and gave him their hearts so that he could live. He gets it.”
Editor’s Note: Troupe and Henry Trice are the nephews of Editor Ashley Toland Trice.
Restrictive cardiomyopathy is a rare form of congestive heart failure that refers to changes in and weakening of the heart muscle, which causes the heart to fill poorly, squeeze poorly or both. There is no cure. In restrictive cardiomyopathy, the heart is a normal size or only slightly enlarged. However, it can’t relax normally during the time between heartbeats when the blood returns from the body. Later in the disease, the heart may not pump blood strongly. This abnormal heart function can affect the lungs, liver and other body systems, according to the National Institutes of Health.
Within the category of cardiomyopathy, restrictive cardiomyopathy is the least common in children, accounting for between 2.5 and 5 percent of the diagnosed cases. It occurs in less than one child in a million, according to the American Heart Association. The average age at diagnosis is 5 to 6 years. The disease appears to affect girls more often than boys. In most cases, the cause is unknown.
(Sources: American Heart Association, National Institutes of Health)
HOW TO HELP
Brothers Troupe and Henry Trice share a page at the Children’s Organ Transplant Association, http://www.cota.org/