Cain, like many other 16-year-olds, enjoys playing sports, specifically soccer and basketball. What makes him unique is he has been diagnosed with nonrheumatic aortic stenosis, aortic root dilation, and right ventricle to pulmonary artery (RV-PA) conduit obstruction. As you can imagine, these heart conditions keep him on the sidelines more than on the playing field.
“Throughout most of my early childhood, I wasn’t aware of my severity of heart problems,” says Cain. “I didn’t realize the parameters that were set on my life until I got to an older age. I can’t play competitive sports, and I can’t do everything my peers can like run or lift weights. Those are things I still struggle with, but it doesn’t hurt me; it’s just different.”
When Cain was just two weeks old, his mother Nicole took him in for his scheduled wellness checkup and discovered he had a heart murmur. When Nicole was referred to a cardiologist at Sibley Heart Center Cardiology and agreed to make an appointment for Cain, the doctor urgently replied, “No, I already made an appointment for Cain. You need to go now.” It was at this impromptu appointment where Cain received his diagnosis later that day.
“Later that week, he went through a balloon angioplasty, and it didn’t work as we hoped,” Nicole says. “When we returned home, Cain got a fever and became really sick. We returned to the hospital when he was four weeks old and discovered he had an aneurysm on his aortic valve. After that was taken care of, he got endocarditis, pericarditis, a collapsed lung and another aneurysm at six weeks old.”
It was a lot for any newborn or parent to deal with, so Children’s Healthcare of Atlanta (CHOA) decided Cain needed to get his aortic valve replaced at only six weeks old. Even though the doctors thought the recovery from this surgery would be tough, he recovered well and was able to come home not long after that procedure. As he continued to spend a lot of time at CHOA throughout the next few years for checkups and routine appointments, he got healthy and didn’t need another surgery until he turned 10.
Nicole told us, “The replacement valve they gave Cain was only supposed to last for three years, but it actually lasted for ten years. He had the Ross procedure when he was 10-years-old in 2012, and now he’s got a pulmonary homograft valve, and his aortic valve is his original pulmonary valve.”
Cain says, “After my last surgery, everything’s been pretty good. I never have any symptoms or problems with my heart. I’ve been going through life easily.”
Cain became healthy to the point where he was able to participate in competitive soccer but ended up having to stop at the age of 14 because he was starting to feel weak. While he was disappointed to stop playing, he was happy he got to have that experience in doing what he wanted to do.
Going through life with severe aortic stenosis has inspired Cain to pursue a career as a doctor, and CHOA has given him fantastic opportunities to learn more about this path. Nicole tells us, “One doctor went above and beyond when Cain started asking him questions about becoming a doctor. He spent a solid 30 minutes talking to him about everything to expect and answered any questions.” Along with answering any questions he has, CHOA has told Cain about opportunities to participate in their summer program and offered him a spot on CHOA’s youth advisory council.
Another program that really helps Cain understand and deal with his condition is Camp Braveheart, where he’s gone every year since he was nine.
“At Camp Braveheart, I’ve met so many other people with conditions that a similar to me or even worse than what I have. I see the position I’m in, and I’m thankful that I can do the things that some people can’t,” says Cain. “This camp also boosted my confidence because I never met anyone who had heart problems or scars on their chests like me. It’s crazy and eye-opening that there were so many people who are like me in this area and attend this camp.”
Nicole agrees that Camp Braveheart was a confidence booster for Cain. “I was very relieved when he started going to Camp Braveheart and seeing other kids with scars on their chest. Going to Camp Braveheart helped him make new friends who have gone through similar things as him. He keeps in contact with them and has created this community of kids that are in the same boat as him. It’s helped him take ownership of his condition.”
CHOA has helped Cain and his family in more ways than one, and they have praised how helpful the whole staff has been.
Cain has gone as far to say that, “CHOA is not just a hospital, it’s community.”
Nicole had this message for other parents going through this same situation: “There are constantly evolving what they can do with medicine, and you’ll be in the best hands possible if you work with CHOA. Trust your doctors and have hope that everything is going to be okay,”
To any child who’s going through heart conditions, Cain has this message: “You’re going to go through a lot of things you won’t understand, or you may not love your body for a long time. You’re going to hear things that will make you sad or mad, but you just have to have hope. Make sure you’re doing the best things for you. It will be okay; just keep going through life.”