Emory Lee was born with an ASD and VSD – meaning there are holes in the upper and lower chambers of his heart. His parents, Tamara and Dustin, found this out after he was born and were told the worst-case scenario treatment would be heart catherization when he was older. They were concerned for Emory, but relieved that he did not require any immediate interventions and could grow up, for the most part, like any other child.
Three years went by and Tamara became uneasy about Emory, “I had this feeling that something else was wrong with his heart.” Following her intuition, they took Emory to Vanderbilt Children’s where a third abnormality was discovered. Emory’s right coronary artery was on the left side of his heart. The Lees were told that their son would certainly need open heart surgery around 10 – 12 years old. They were crushed. After years of thinking Emory may need a straightforward procedure preformed in the cath lab they were now blindsided by major open-heart surgery now looming in the future.
“I knew this was coming, one day, but not at 5 years old. I thought we would have more time to prepare.”
In June of 2017, Emory’s parents were shocked to find out he would need surgery sooner than anyone originally thought. “I knew this was coming, one day, but not at 5 years old. I thought we would have more time to prepare,” Tamara said.
Late November of last year Emory had his surgery at Boston Children’s Hospital at 5 years old. However, due to his complicated anatomy, his coronary artery is still taking the same dangerous course as it was before. Improvements were made, but he will still require life-long care and monitoring. Since the surgery, Emory can keep up with other kids. “We are amazed at how well he is doing, and we can only hope this lasts a lifetime. However, we know CHD has no cure and that surgery is only a band aid.”
“We are amazed at how well he is doing, and we can only hope this lasts a lifetime. However, we know CHD has no cure and that surgery is only a band aid.”
Without his scar exposed you would never know what Emory has been through. Though his surgery was successful his heart defect is not cured. Research is the key to unlocking permanent treatments for congenital heart disease. There must be more awareness, more funding and more research to defeat CHD.