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Four-year-old Jake Johnson was surprised when his parents told him that they were going to have to fly from their home in North Carolina to Children's Hospital Boston because he had a boo-boo on his heart. He looked down his shirt and assured them, I don't have a boo-boo!"
Jake was born with heterotaxy syndrome, meaning he was born with a single ventricle in his heart and no spleen. He was on a feeding tube, required oxygen and at one point was on as many as 10 medications. He underwent two open heart surgeries to direct blood flow to his lungs, his best chance at a normal life was a biventricular repair that would give him a four-chamber heart, so Jake's doctor in North Carolina contacted Children's Chief of Cardiac Surgery, Pedro del Nido, MD, about performing the procedure.
Del Nido preformed the surgery in mid-January, and it was so successful that Jake likely won't need additional surgeries and will no longer need to be on so many medications. He's doing so well, in fact, that his parents haven't had to limit his physical activity. He loves playing with his baby sister, Josie, going as high as he can on the swings and driving his big wheel and his Thomas the Tank Engine set. Jake is funny, stubborn, energetic and wise beyond his years," says his mom, Jo Ellen. If you know Jake, then you know what it feels like to be loved by him—simply amazing!"
Jake's dad, David, was thrilled that they came to Children's. It's been fantastic here. We got to stay with him the whole time he was in the ICU," he said. Now, Jake and his family are settling back in North Carolina and excited to see family and friends throughout Jake's recovery.
Hannah Englert
Declan Finn
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