Though Charlie Levin entered the world five weeks early and showed no obvious signs of trouble at birth, his parents, Ken and Merredith, weren’t convinced everything was normal.
“He was given the all-clear to go home, but he looked orange,” Merredith said. “Like a Muppet.”
At 3 months old, Charlie was vomiting regularly, losing weight and making disconcerting grunting sounds. His parents took him to the pediatrician’s office six times in a four-week period. They saw nearly every physician in the Williamsville practice and they all said the same thing, that it was gastroesophageal reflux, a common condition in infants. Ken and Merredith talked with other parents whose children had the condition, but Charlie’s symptoms seemed much worse and he wasn’t responding to any treatments. When the vomiting worsened and he started breathing rapidly, they demanded to see another doctor who’d previously been unavailable, one who’d taken care of their daughter, Parker, when she was sick as an infant. The pediatrician took one look at Charlie and said she would meet them at the hospital near their home in Buffalo.
After making arrangements for Ken’s mother to pick up Parker from preschool, the family headed to the hospital, where a chest X-ray revealed an enlarged heart.
“All we saw was ribs and heart,” said Merredith. “You couldn’t even see his lungs.”
Charlie was admitted to the hospital, but by the next day, needing further testing and treatment, was transported to Golisano Children’s Hospital Pediatric Cardiac Intensive Care Unit at the University of Rochester Medical Center, where he was diagnosed with hypoplastic left heart syndrome. The left side of Charlie’s heart had not fully developed and, as a result, was unable to pump sufficient blood to his body. That made the right side of his heart have to work much harder, which was why it had become three times its regular size. His aortic arch was so narrow, like a pinched straw, that he was unable to get oxygenated blood to his kidneys, liver, and other vital parts of the body, while too much blood was being sent to his lungs.
Testing done in Golisano Children’s Hospital’s pediatric catheterization lab, the only one in western New York to offer a full range of interventional procedures for children with congenital heart disease, showed that Charlie was pretty far into congestive heart failure, and he would need a series of open-heart surgeries to save his life.
His particular type of cardiac defect usually presents symptoms in utero or at birth.
“The problem with symptoms showing up three months later is that the heart changes so much once babies are breathing outside the uterus, and by that time it has been working very hard just to keep up some basic, minimal requirements,” said L. Eugene Daugherty, M.D., chief of the Division of Pediatric Critical Care at Golisano Children’s Hospital. “So his heart was really strained and stressed by the time he came here.”
As family members rushed to the hospital to lend support, the pediatric cardiac team led by George M. Alfieris, M.D., a nationally recognized pediatric cardiac surgeon, worked hard to stabilize Charlie, an effort that lasted a full 10 days before the first surgery.
In the meantime, Ken sought medical opinions from children’s hospitals in Washington, D.C., where his close friend from childhood is a pediatric cardiologist, and Philadelphia. Both opinions were the same – moving Charlie anywhere else would be too risky, and he was in the best hands possible, given that Golisano Children’s Hospital is the leader in pediatric cardiac surgery throughout western New York.
During the eight-hour surgery, Merredith went upstairs to the Ronald McDonald House within the Hospital, hoping to find something to do to keep her hands busy. She and Ken were staying there, while Parker stayed with her grandparents. Merredith scrubbed the bathroom floor in her room, then offered to help with the laundry, a request the volunteers granted. “Everybody tried to give us our space and be there for us at the same time,” she said. “They were wonderful.”
Charlie was in the hospital for six weeks after the surgery, which reduced the blood flow to Charlie’s lungs, re-routed the right ventricle to pump blood to his body, and repaired the aorta. At 13 months, now healthy and strong, he went through a second surgery that re-routed the blood flowing back from the top third of his body so that it rushed directly to his lungs. This time, he only needed six days of recovery, and received physical therapy and occupational therapy to help him catch up to where he should be. He will have two more surgeries before kindergarten – one to repair a leaky valve and another to redirect the blood flow from his lower body directly to his lungs.
Despite some complications, Charlie has recovered faster than anyone had predicted. Now down from eight medications to two, Charlie, with his sideways smirk and single dimple, is pretty much a normal 3-year-old boy.
There’s still a long road ahead, and he will need lifelong therapies, but his parents feel that the medical team at Golisano Children’s Hospital has fully prepared them for what’s to come.
“Technically, they answered every question we had, and on a social level, there was a lot of handholding,” Ken said. “To set us at ease without being disingenuous, while being honest about the situation at the same time, is an amazing skill.”
Inspired by their son’s care, Ken and Merredith started the group Heart Works, aimed at extending and improving the lives of other children with congenital heart disease. The Levins were hoping to raise $20,000 in proceeds, split evenly between the American Heart Association (AHA) and Golisano Children’s Hospital, at their first fundraiser, but they doubled that amount. Their mission is to help the AHA fund local pediatric cardiac research and Golisano Children’s Hospital purchase new equipment for the Children’s Heart Center.
“The team at Golisano Children’s Hospital is world-class, from the people cleaning the rooms to the surgeons and everyone in between,” Merredith said. “It’s an organization we’ll continue to support forever.”
Charlie has been chosen to be one of the hospital’s five Miracle Kids for 2012, to represent the 74,000 children Golisano Children’s Hospital treats every year. Tune in to Children’s Miracle Network’s News 10 NBC Telethon on Sunday, June 3, to meet Charlie and his family, along with four other Miracle Kid families, Golisano Children’s Hospital supporters and health care providers. The Telethon is from 10 a.m. to 1 p.m. and 6:30 to 11 p.m. on News 10 NBC. Dial (585) 241-KIDS during the Telethon or donate online to make a gift.
The Telethon is part of a weekend-long celebration called Miracle Weekend, which kicks off Saturday, June 2, with the 16th annual Stroll for Strong Kids fundraising walk and 5K run. The event starts at 8 a.m. at the University of Rochester’s River Campus and wraps up at about 1 p.m. To sign up or learn more, visit https://bitly.com/stroll2012.
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