When her parents ask Olivia Hammond of Bryan, TX, to show what her little brother’s heart looks like, the adorable 4 year old makes the familiar shape with both hands. Then she takes half of it away.
That’s a quick explanation of Hypoplastic Left Heart Syndrome (HLHS), a rare and serious congenital heart defect. Deacon Hammond, who just turned 2, has already had two open-heart surgeries as a result of it; a third surgery is on the horizon, and a future heart transplant is all but inevitable.
Deacon’s heart is on the mind of every grownup in his orbit. But the toddler himself only has time for dogs—especially Reveille, the American collie mascot of his hometown Texas Aggies—and for getting into his sister’s stuff. Both are fine with mom Brittany and dad Walt, if not Olivia, because that’s what normal 2 year olds do. And that’s how they’re raising their son.
“We’re not going to put him in a bubble,” Brittany said. “We want Deacon to experience and enjoy life, for however long life is. It’s not always easy to do, but that’s our goal … to not let him think that he is different in any way.”
What that looks like right now is a blur of motion. As with many newer to walking, Deacon prefers running. He chases his sister everywhere, with an enforced pause in the action only when Brittany or Walt glimpse a blue tinge in Deacon’s lips or fingers. “That’s when we know, ‘OK, he needs to sit down for a minute,'” Brittany said.
Because Deacon’s sternum-to-navel “zipper scar,” usually hidden under t-shirts, is the only outward sign of the complex Norwood and Glenn surgeries that make it possible for patients like him to survive, many who meet him think he’s doing great. This is true. And false.
“People see him and say, ‘Oh, he’s fine … he’s fixed,'” Brittany said. “But with kids like Deacon, the situation is inside. You can’t see it, and when you do see it, then it’s bad.”
With no ability to control when Deacon will need a Fontan procedure—the third of three repair surgeries for HLHS patients—or possibly a heart transplant in the future, the Hammonds have chosen instead to celebrate what Brittany describes as “the miracle manifesting in front of us every single day.” Deacon continues to meet and exceed milestones, and his doctors say they can’t believe how well he is doing.
Reflecting on his son, Walt, who is an ordained minister and the grandson, son and brother of pastors, said, “Deacon is made this way. There is a reason for it, whether we know it or not, and he is going to serve a greater purpose.”
While Walt knows that some families in the midst of a child’s health crisis simply can’t imagine a greater purpose—”A lot of people hate God in that moment,” he said—his faith and Bible training have been his mainstays.
Citing Hebrews 11:1, which describes faith as the ability to believe in things unseen, Walt said, “As a believer in God, I also rely on science for my son’s medical condition” —and he sees the God-given talents that Deacon’s medical team uses to repair his son’s heart and lengthen his life.
While Walt, Brittany and their families and friends continually pray for God to make Deacon’s heart whole, that has not happened. But as he watches Deacon motor across the living room in his pajamas, Walt quickly clarifies: “Our son may only have half a heart, but he is whole. He is amazing.”
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