When you think of heart disease, you probably think of older adults. But one in every 100 children is born with it. It came as a surprise for a family in Strongsville, whose story is nothing short of inspirational.
“His nursery is decorated in C.S. Lewis' Chronicles of Narnia theme,” explained Rachel Powers.
“It's really fun,” added Chase Powers. “It's lions. It's something he can grow into.”
As it turns out, that theme would be prophetic.
“We didn't know about his heart defect when we decorated his nursery,” Rachel said.
The mantra of it?
“Having a heart of a lion,” Chase said.
A heart -- it was discovered -- that had a rare defect.
“I was only 72 hours postpartum, so I was a disaster,” Rachel recalled. “It was devastating to me to hear that my son would need open heart surgery just in order to survive.”
But that surgery would have to wait for their son, Jeremiah.
“When you're born, a newborn's heart is about the size of a walnut, so pretty small,” explained Dr. Elizabeth “Tess” Saarel, chair of pediatric cardiology at Cleveland Clinic Children’s. “So, the surgeons who have to repair these tiny little valves have a better chance of repairing valves when kids are bigger and when the heart's, at least it doesn't seem that big, but it's relatively a lot bigger compared to a newborn when he's four months.”
That meant four months of growing and waiting.
“I don't know if I can put it into words,” said Chase. “Having to kind of watch a child. He was on a slow death march, really.
“He struggled to breathe,” added Rachel. “He would retract, so every time he would breathe, you could see his ribs kind of sucking in. He was always hungry because his body was burning so many calories and he was exclusively breastfed, so I was feeding him every one to two hours.”
In June, Jeremiah's little heart had grown enough to get the life-saving surgery he needed.
“It was still scary, but we felt confident with the team at Cleveland Clinic Children's, especially Dr. Najm,” Rachel said. “His outcomes and his statistics are amazing and much better than the national average.”
“This is a very delicate procedure,” Dr. Saarel said. “His problem was with the valves from the upper to lower chamber of the heart. They never separated normally, so instead of being two valves, he had one large valve. The tissue in the valves is really thin. You can see through it. If you're even a millimeter off right or left or wrong place, your repair doesn't work as well and the valve remains abnormal.”
Four hours later, the surgery was over.
“We were being prayed for and supported by friends and family and that was extremely helpful,” said Chase. “When we handed him off and he had the surgery, it was kind of like he wasn't living a life. He was going towards an end, and we saw the handing off as kind of a beginning. So, when he comes out of the surgery, we're thinking ok, he's not an improved Jeremiah, he's essentially a new one."
“It was awesome,” recalled Rachel. “After his surgery, his personality came back stronger and so much more incredible. His coloring was better. He was more pink. I mean, it was truly awesome to see and to witness the miracle of recovery.”
Jeremiah just reached a milestone: His first birthday.
“He has the heart of a lion and he's a fighter and he's a warrior and he brings us joy every day,” said Rachel.
Seeing Jeremiah now, you would never know all he has been through.
“My hope is for my son, through his struggles, to bring hope to others,” Chase said.
The only clue is the scar across his chest.
“To me, the scar is beautiful, because it meant life,” explained Chase. “You can suffer. You can go through this trauma, but just to show there's hope in persevering and that there is a preciousness to life.”
Jeremiah's doctors say because he had such a good surgery, he will go on to be a normal, healthy little boy, and can even play sports if he wants to. There is a chance he'll need another surgery when he is older, but his doctors say it is a lot better tolerated when you are bigger.