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When Evan Dargis was born at AdventHealth Winter Park, doctors noticed several serious health issues right away.
Evan had a cardiac murmur and was cyanotic (blue), indicating a congenital heart defect. An echocardiogram showed a double outlet right ventricle, transposition of the greater arteries, pulmonary stenosis, and atrial and ventricular septal defects. On top of that, he had a severe case of torticollis (a painfully twisted and turned neck), a single kidney, multiple but nonfunctioning spleens, a severe form of left radial club hand and other medical conditions.
As soon as the doctors realized the severity of his defects they put us in an ambulance bound for AdventHealth for Children, says Brett Dargis, Evans father. Understandably, he and Rebecca, Evans mother, were alarmed.
Getting a Handle on the Situation
Almost 1 percent of children are born with congenital heart disease, says Agustin Ramos, MD, medical director of Pediatric Cardiology at AdventHealth for Children. Sometimes these defects go away on their own, or don’t require any treatment. But sometimes they are more significant and require intervention.
For Evan, the temporary solution was to insert a tube called a shunt between the aorta and the pulmonary artery, until he was old enough to undergo open-heart repair when he was 10 months old. At 18 months, he developed a left-ventricle obstruction, so a surgeon had to remove it.
As the issues piled up, we became overwhelmed, Brett says.
Complex cases like Evans bring special challenges, according to Michael Keating, MD, medical director of Pediatric Urology at AdventHealth for Children. Since a variety of different body systems can be affected, the solution to a problem with one can have implications for another, he explains. The key to management is communication between the child’s different health care providers and the family.
Fast Forward to Today
Now, Evan is 8 years old and doing well. He lives with his parents in Montverde in Lake County.
Other than getting fatigued on warm days, he does everything his friends do, Brett says. Evan likely has two more open-heart surgeries to go, and we are at ease knowing that AdventHealth for Children will continue to take care of him, Brett adds.
We are very proud of Evan, says Dr. Ramos. He’s one of my favorite patients.