He’s an amazing little boy with a magnetic personality and unparalleled bravery.
At her 20-week ultrasound, Laurie Jones and her husband Kevin found out there was a problem with their baby’s heart. A fetal echocardiogram confirmed that Isaac, who was born on February 16, 2009, had hypoplastic left heart syndrome. This congenital defect is characterized by a severely underdeveloped left side of the heart. Laurie and Kevin braced themselves for surgeries Isaac would need to create normal blood flow in and out of his heart.
At 4 days old, Isaac sailed through his first surgery at St. Louis Children’s Hospital. “I knew we were at the right place when they brought him back to his room and the Heart Center nurse calmly assured me that everything was going to be OK,” Laurie says. “We’ve been in love with Children’s and the staff who work there ever since.”
Isaac had his second open heart surgery at 4 months old and his third at 4 years old. Plus, he required a cardiac catheterization after a check-up revealed a narrowing of his aorta, and still visits the Heart Center clinic on a regular basis.
Isaac turned 7 years old in February and already looks forward to his third visit to Camp Rhythm, a week-long camp for Heart Center patients funded by the St. Louis Children’s Hospital Foundation, as a mini camper. “He asks me on a regular basis when he can go back to camp,” Laurie says. “We feel so very fortunate to have a place he can go where the other kids have scars on their chests, too.”
Laurie and Kevin, who both work full time and must juggle the activities of two children, look for ways to pay that fortune forward. “We’ve been told that Isaac may need a heart transplant one day,” Laurie says. “We just hope that, before that happens, research and new technology will lead to new, less-invasive options.”