One-in-a-million. That’s a great way to describe 4-year-old Sammy.
With a mega-watt smile and seemingly boundless energy, he’s a fighter through and through. Born with an extremely rare, life-threatening condition known as single ventricle crisscrossed heart, Sammy had to battle incredible obstacles from day one.
“Only one in a million children with heart defects has it,” explains Rosie, Sammy’s mother.
The condition is marked by crisscrossed ventricles that result in a weak connection between the heart and the lungs. To correct the defect and ensure survival, Sammy would need a series of surgeries within his first year.
At just a week old he had his first open heart surgery. The second surgery, a 12-hour ordeal, followed a few weeks later. The nerve-wracking situation all started when Sammy coded during a heart catheterization procedure. He came around after 35 minutes of CPR, but it prompted emergency surgery the following morning. Two hours into the procedure his condition was deteriorating and the future began to look bleak. Sammy’s parents braced for the worst.
However, eight-week-old Sammy had other ideas. He refused to give up and his team of Johns Hopkins All Children’s Heart Institute cardiovascular physicians and nurses, led by surgeon Jeffrey Jacobs, M.D., was there to help pull him through. Ten hours later a nurse came out of the operating room to tell Rosie and Craig, Sammy’s father, that Sammy was alive and breathing on his own. It was an incredible turn of events.
“What really saved Sammy is that there is so much depth in that program at all levels: the combination of cardiology, cardiac surgery, anesthesia, critical care and nursing,” Jacobs says. “To get Sammy to live required excellence in at least those five areas. That combination of excellence is what really pulled this kid through this life-threatening emergency. Had there been a weakness in any one of those areas Sammy would not be here today.”
Being the fighter that he is, Sammy recovered and was able to have a third procedure in January 2013.
Soon after his third birthday, he had what his cardiac team and parents hope will be his final open-heart surgery.
“It was definitely the toughest surgery for Sammy, solely due to being 3 and understanding more of what was going on,” Rosie says. “We made the best of our two-week stay.”
Rosie and Craig found ways to distract Sammy. Once he was well enough, they were able to hide little plastic animals and dinosaurs around the cardiovascular intensive care unit and take him on scavenger hunts. More than just entertainment, the excursions helped his recovery by getting Sammy up and moving.
“These days, Sammy is bursting with energy. He started pre-kindergarten in fall 2016 and is enjoying life like any other 4-year-old, spending playtime running circles around his parents and learning all about animals and the outdoors. At school he is making friends and works with an occupational therapist once a week to strengthen his fine motor skills, just to make sure his educational future gets off to a good start. To any outside observer it is near impossible to tell that just a few years ago Sammy was struggling with a critical heart defect.
“As he gets older, I notice him talking more about his heart. He knows that it is special and what he has been through is special,” Rosie adds. “We were recently at Johns Hopkins All Children’s Hospital and had a chance to see his surgeon, Dr. Jacobs. During the visit Sammy gave him a big hug and said, ‘Thank you for fixing my heart.’ I almost cried right there on the spot.”
For Sammy’s family, he is truly a miracle. As a result of the exceptional medical care and compassion at Johns Hopkins All Children’s, this one-in-a-million kid now has the opportunity to make a mark on the world.
“He’s a little firecracker, with quite a personality on him, but most of all, is more loving than anyone I’ve ever known,” Rosie says. “He loves to love.”