Celebrating a patient's success: Jamie's story

Published on February 5, 2013

A letter from the Domene family:

When Jamie was first born, we had no idea he had a congenital heart defect. It wasn’t until his nine-month well visit at the pediatrician’s office that they detected something might be wrong. During that visit, the doctor was unable to pick up a pulse in his legs. He referred Jamie to Dr. James W. Boone, a pediatric cardiologist who diagnosed Jamie’s heart defect.

Jamie had sub-aortic stenosis, which is a narrowing of the left ventricle, and a co-arctation, which is a narrow spot in his aorta. These defects would eventually require three surgeries to correct. The last procedure, called a Ross/Kono, was very complex. Dr. Erle Austin, a member of the UofL Physicians practice group, was his cardiothoracic surgeon.

When we first heard the news, it was very scary and very overwhelming. At 10 months old, Jamie had his first surgery to repair the co-arctation. When Jamie was 14 months old, he had his second surgery, which was an attempt to repair the sub-aortic stenosis. After the surgery, Jamie had some complications that kept him in the hospital for a couple more weeks. Finally, he got to come home. We got to enjoy the next six months, but we knew there was a third, more complex surgery ahead of us.

Right before Jamie’s second birthday, he had his third surgery. This surgery took all day and was very difficult. Jamie pulled through, and the defect was repaired. Dr. Austin’s dedication was unwavering and skill outstanding.

Over the past 10 years, Jamie has had five surgeries, including a pacemaker implantation, a pacemaker replacement and most recently, replacing a donor pulmonary valve he had outgrown with a cow jugular vein! One of his cardiologists, Dr. Christopher Johnsrude, is a pediatric cardiologist with UofL Physicians and has been instrumental in Jamie’s pacemaker care.

Today, Jamie is doing great. He’s active, happy and healthy. He enjoys swimming, tennis, playing with his sister, and being in the sixth grade. While Jamie will have future procedures to replace his pacemaker and valve, he’s expected to live a full life. That is something we weren’t always sure was going to happen.

We’ve been so lucky to have benefited from all the research the UofL Physicians doctors do through the UofL School of Medicine and the unparalleled care they provide to their patients. We feel hopeful that by the time Jamie needs his next valve replacement, it might be performed in the cath lab instead of the operating room. Now that is something to get excited about!

We thank Drs. Erle Austin and Christopher Johnsrude, and their staff for the incredible care they gave our son and the compassion they showed our family. We are truly grateful.

Best wishes,

Lisa, David, Jamie and Lindsey Domene