More than three months after being placed on a transplant list for a new heart, Stephen Trice got a call late one evening that would ultimately save his youngest son’s life. A heart was available for three-year-old Henry Trice, who had been diagnosed with restrictive cardiomyopathy at 18 months old. Despite the one-in-a-million odds of having the rare disease, the family had been through this before. Henry’s older brother, Troupe, also had the degenerative disorder and was the recipient of two successive donor hearts about seven years earlier.

cover050814

Henry, a tiny boy who likes chocolate and cheese sticks, was placed on the donor list at Egelston Hospital in Atlanta on Valentine’s Day this year. Since then, his parents and family prayed that a heart would be found in time. Just before midnight on May 26, Memorial Day, volunteer pilots from Atlanta flew down to pick up father and son for the plane ride to Atlanta. Typically, a donor heart needs to be transplanted within about four hours for the best outcome. “We need a big prayer tonight!” Stephen typed into a Facebook post as they waited for the Angel Flight crew. They made it to Atlanta in time and began preparing Henry for the complicated surgery.

As a new day dawned on May 27, Stephen continued his Facebook updates: “Henry’s transplant started 15 minutes ago.” Hundreds of people responded, offering words of hope and prayers for healing. Just before noon that day, doctors successfully placed another child’s heart inside his son. “Henry is still on bypass but his new heart is beating and they are warming him up,” a new message read. An hour after that, the news remained positive: “Henry is off bypass! Closing soon!”

As fate would have it, Henry’s mother, Amelie, and his older brother, Troupe, traveled to Washington to attend a memorial service for Amelie’s grandmother a few days earlier. Because of Henry’s condition, Amelie grappled with whether to attend. When Stephen called, she quickly booked a flight. The hours it took to get home were tense, she said, but having her oldest son with her, and knowing the outcome of a heart transplant could be nothing short of miraculous, helped.

Amelie arrived at Egelston in time to join her husband to see a sedated Henry after his surgery. As with other organ transplant recipients, his chest was still open and a ventilator tube ran down his throat, keeping his breathing steady.

A day later, on May 28, Stephen offered another update: “Feeling very thankful for all the support we have received and for the donor family that gave Henry a chance to live. I will do my best to keep your gift safe.”

In the days that followed, doctors continued to give positive news about Henry’s condition. The 3-year-old’s chest was closed at least a day earlier than expected. “It’s gone amazingly well so far,” Amelie said.

On May 29, Henry’s breathing tube was removed. He began talking to his parents almost immediately. “One of the first things he said after the ventilator was taken out, he told us ‘I love you both so much,’ Amelie recalled. “He’s just so sweet.”

By June 3, the day his older brother got out of school for summer back in Mobile, Henry was sitting up in bed and coloring. He also explored the hospital from the comfort of a wagon. Stephen and Amelie posted photos of their young son on Facebook, smiling as he sat next to Izzy, a Golden Retriever trained as a therapy pet for sick children.

The moment was a welcome relief from the months of worry and fear leading up to Henry’s transplant. Learning their second son had the same disease as their first-born had been heartbreaking for the local family. Before the diagnosis, the Trices and their doctors thought an infection was to blame for Troupe’s heart problem. They didn’t suspect the rare disease could be genetic. Amelie said no one else in their families had ever suffered from similar health issues.

The complex disease their son’s developed took months to diagnose in each case. Restrictive cardiomyopathy refers to changes in and weakening of the heart muscle, which causes the heart to fill poorly, squeeze poorly or both. It’s not always easy to detect because the heart is still a normal size or only slightly enlarged. The issue is that the heart 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.

Eventually, the abnormal heart function can affect the lungs, liver and other systems of the body. Restrictive cardiomyopathy is least common in children, accounting for less than 5 percent of cases. It occurs in less than one child in a million, according to the American Heart Association. There is no cure for the disease, so heart transplants become the only option, doctors told the Trices.

Just 10 days after the transplant, sooner than anyone in his family ever imagined, Henry was released from the hospital. Stephen, Amelie and Henry have settled into a room at the Atlanta Ronald McDonald house near the hospital. The spot will be their home for about a month as doctors continue to monitor Henry’s heart pressures and check for signs of rejection and infection, among other post transplant issues.

After leaving Egelston on June 5, Henry was able to get a bath, rinsing off remnants of the sticky goo where electrodes monitored his vital signs. “He’s been eating and drinking and cracking jokes,” his mother said. “Every once in a while he smiles and laughs.”

On June 8, they headed back to the hospital for more tests. Henry was readmitted and given oxygen to help his breathing. A day later, more labs came back clear. “Great news,” Amelie wrote. “Henry’s biopsy showed zero rejection. He is doing fine, still draining a little fluid, looking great!”

Since his surgery, Henry has begun telling his parents he wants to go home, longing for the comfort of familiar surroundings that don’t include doctors, nurses or needles. “I’ve been telling him he’s going to get better and everything is going to be OK,” Amelie said. “He’s got a very positive attitude.”

To pass the time between checkups, Henry has been napping, playing games on his mom’s phone and dreaming of the day he will sprint past his older brother. Said Amelie: “He told me the other day ‘Now I’m going to be able to run faster than Troupe.’”

Editor’s Note: This family’s story was originally featured in the May 8, 2014, cover story of Lagniappe “Heart to Heart,” also penned by Casandra Butler Andrews. They are the nephews of Lagniappe’s Ashley Trice. You can find the original story at https://lagniappemobile.com/cover-story-one-million-disease-strikes-family-twice/

To help with the family with medical expenses, a donation can be made through the Children’s Organ Transplant Association website at http://cota.donorpages.com/patientonlinedonation/cotafortroupet/.