Courtesy Leah Ward
In the sunny fields behind his house on Texas ranch land that seems to go on forever, 8-year-old Jackson Ward holds out his his hand and strokes his beloved cow Itsy. The boy smiles, overjoyed to finally give her a rub.
Days earlier on Dec. 20, Jackson left Texas Children's Hospital after a 453-day stay that included a lifesaving heart transplant.
The scene deeply stirred the emotions of his mother, Leah. "It's been amazing to see him enjoy life again," she tells PEOPLE. "It's truly a blessing."
This was a moment that Leah wasn't sure she'd ever see again. About seven weeks earlier, on Oct.11, Jackson's chest split open following a long-awaited and life-saving heart transplant. He was critically ill and had a blood infection. "I felt that Jackson wouldn't be able to come back from it," his mom says. "I was broken the whole day."
But Jackson, a survivor with a lifelong dogged determination to beat the odds, soon made progress once again.
When Leah, now 38, was 20 weeks pregnant with Jackson, a sonogram revealed that her baby had a potentially fatal congenital birth defect called hypoplastic left heart syndrome, which occurs when a child is born with a non-functioning left side of their heart. According to the C.D.C., only about 1,000 babies are born in the U.S. each year with the heart syndrome.
"I was devastated," says Leah, who met her husband Jason, also 38, as high school students in rural Cleveland, Texas, where they still reside.
Courtesy Leah Ward Jackson and Itsy's son, Ocho
The news followed an unimaginable tragedy that happened about a year earlier: the couple's first child, Marshall, was killed in a car accident at 20 months old in April 2013.
"When we first got the diagnosis, I came home and I told my husband 'I don't want to give up on him,'" Leah recalls. "Finding out that I was pregnant with him snapped me out of my depression. I was in a bad spot and he saved my life."
Jackson's parents have been unyielding in their efforts to save their son ever since.
After researching options their doctors suggested, the couple decided that when Jackson was born, he'd undergo a three-part heart surgery at Texas Children's Hospital in Houston — at 5 days old, again when he was 4 ½ months, and when he was 5 years old — to increase blood flow to the body and bypass the absence of the left side of the heart.
Courtesy Leah Ward Jackson and his sister, Mae, in 2021 before he was hospitalized
"Once an operation like that is done, it's highly, highly variable how long such an operation will last," says Dr. William Dreyer, a cardiologist and medical director of heart failure, cardiomyopathy and cardiac transplantation at Texas Children's. "Some patients, it will last them into adulthood, others not so much."
For a time, it worked. Jackson had a mostly normal childhood, and could do anything except play contact sports. He even had a quick recovery from an additional procedure at Children's Hospital in Philadelphia when he was 5 years old to cure plastic bronchitis, a leaking of fluid into his airways.
But the condition also left him severely immunocompromised. During his first weeks of in-person school in Sept. 2021, he caught a rhinovirus, which causes the common cold.
Doctors suspect the virus caused myocarditis, an inflammation or infection of Jackson's heart muscle, which led to severe heart failure. He was immediately hospitalized at Texas Children's.
Courtesy Leah Ward Jackson Ward six weeks after his heart transplant
Then doctors delivered more shocking news to Leah and Jason: their son would need a heart transplant. To survive until a donor heart became available, Jackson had to have another operation to implant an artificial pump device called the Berlin Heart.
"It was difficult because he had to be plugged into an outlet," Leah says. "It was nerve-wracking. There was never really a peaceful moment while he was on the Berlin because there was so many things that could go wrong."
Over the next year-plus in Texas Children's, Jackson endured a rough ride. He developed liver failure after the Berlin Heart was connected, and depression from being stuck in the hospital for so long. The steroids he needed for the liver issues caused his face to become puffy.
A matching donor heart became available in early July, and Jackson was in the operating room getting prepped when the plane carrying his new heart malfunctioned.
Texas Children's Hospital Jackson Ward saying goodbye to a hospital therapy dog
"I felt broke. Was this Jackson's only chance to get a heart?" recalls Leah, who lived at the hospital, an hour from home, with her son. "We had been waiting for so long already. I didn't know if we were going to have to wait that long again or when the next offer would come."
Jackson would finally receive his life saving transplant on Oct. 1.
"I was so relieved," says Leah. "This was our chance to have our life back. We know absolutely nothing about our donor, but I do want to eventually know who this person was — I'm indebted to them forever."
But relief evaporated 11 days later when Jackson's chest split open due to steroid-induced osteoporosis. In addition, doctors discovered he had sepsis, a blood infection.
The news overwhelmed Leah and her husband, who works as a police officer in nearby Conroe, Texas.
"It was heartbreaking. The only time I had felt that deep of a sadness is when we lost Marshall," Leah says. "And that all those same feelings came back."
Courtesy Leah Ward Jackson Ward in his grandfather's tractor
"Jackson's condition was very, very critical," says Dr. Iki Adachi, one of Jackson's transplant surgeons at Texas Children's Hospital, who tried to comfort Leah at the time. "But I told her he was moving in the right direction, slowly."
Leah and her husband, who "talk about everything," came up with a saying to help them cope after their first child died: "One breath, one step, one day at a time." They've continued to used the mantra through Jackson's treatments and surgeries.
"We take one breath at a time," Leah says. "It gets easier."
Jackson stayed sedated for weeks to cure the infection, and doctors closed up his chest again on Nov. 1. Seven weeks later in what seemed like a miracle, the 8-year-old was well enough to walk slowly out of the hospital as staff lined the hallways to cheer him on.
Texas Children's Hospital Jackson Ward and his mother, Leah, leaving Texas Children's Hospital after 453 days
Nowadays, Jackson continues to regain strength, playing outside for hours with his 6-year-old sister Mae and helping their mom with chores like feeding horses on the family's 100-acre ranch. At night, he goes down to the pond to fish.
"These kids are so busy that by the end of the day I'm exhausted and I enjoy their giggles and silliness," Leah wrote in a Facebook post on a page where she's been documenting her son's journey for years. "Jackson goes all day long."
Leah teaches Jackson, a third grader, and Mae, who's in kindergarten, at home since it's still important for her son to avoid being exposed to the many possible germs so common in school settings.
Courtesy Leah Ward Jackson with his sister, Mae, and parents Leah and Jason at Christmas, 2022
His recovery remains challenging at times. "I'm always on alert," says Leah. "Did he complain of chest pain? Did he complain that he was dizzy today? It is his activity level the same as previous? Is he more tired?"
The regimen of medications Jackson still takes to keep his body from rejecting the heart and maintain his electrolyte balance have side effects, including tremors and edema.
He's had three heart biopsies to monitor rejection, and goes to physical therapy twice a week at the hospital to regain strength he lost during his lengthy hospitalization.
"He can't run," Leah says, "and his balance is still off."
Doctors now say Jackson's prognosis is good. "Our goal is to make him as normal as possible as a kid," says Dr. Adachi. "After heart transplantation, many of these patients do whatever they want to do as a kid. At this point, there's no real reason to say he won't be able to do this kind of stuff."
Courtesy Leah Ward
Leah recently told PEOPLE she feels she can relax a bit after a Jan. 5 visit with Jackson's cardiologist went so well.
"It just really made me realize, 'You can take a bigger breath,'" she says. "You don't have to be on high alert all day long."
(A rep for Texas Children's Hospital suggests visiting its giving page and selecting the preferred recipient program, department or center from a drop-down menu when creating a donation.)
"We're living again!" Leah wrote in a recent Facebook post. "Living because someone gave us our Jackson's life back."