With a large majority of patients born with a congenital heart defect surviving into adulthood, many continue to be seen by their childhood doctors who have a unique understanding of their condition. Dr. Gregory Johnson, pediatric and congenital cardiologist at Austin, Texas-based Pediatric and Congenital Cardiology Associates, an affiliate of Pediatrix Cardiology, has been following Martin Isaac Salazar, 27, for more than 20 years. Salazar has Marfan syndrome, a genetic disorder that affects the connective tissue, causing the aortic wall to weaken and either tear or have an aortic aneurysm. “Most of the time the patient doesn’t survive it,” Dr. Johnson said. “We can’t get them to surgery quick enough.” Dr. Johnson has been watching Salazar’s heart with annual scans to look for a dilation in the aorta that would indicate his aorta is weakening. Last summer, it had stretched to a size that required surgical intervention to prevent an aneurysm or tear. The team at the Texas Center for Pediatric and Congenital Heart Disease at Dell Children’s and UT Health Austin used a newer technique that allowed Salazar to keep his aortic valve. Because of new techniques like this, “a lot of patients with Marfan can expect to have a fairly normal lifespan, Dr. Johnson said. 

View the full story at Austin American-Statesman 

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