Brothers with CHD Live Life to the Fullest
With no history of CHD in either her or her husband’s families, Katie struggled with feeling that her firstborn son Miguel’s heart defects were somehow her fault. He was born six years ago with L-transposition of the great arteries, a serious and rare congenital heart defect in which the two pumping chambers are switched and in addition, the main arteries leaving the heart are reversed. At the time, it sounded like a death sentence to Katie.
However, Miguel did very well, living a normal life and having a successful double switch operation in 2018. Brian Cardis, MD, at Sibley Heart Center Cardiology in Macon is his pediatric cardiologist. Miguel now attends kindergarten and runs everywhere, according to his mom.
When Katie became pregnant a second time with another son, Dominic, she and Jon figured lightning couldn’t strike twice. Miguel’s heart condition is very rare, and it would be almost unheard of to have two children with complex heart disease. But, when Katie went in for a routine ultrasound, doctors noticed an abnormality in Dominic’s heart as well. A fetal echocardiogram was then performed by Dr. Cardis and showed that Dominic had a rare heart defect consisting of dextrocardia (heart on the right side of the chest instead of the left) and a single ventricle (only one pumping chamber instead of two).
We talked about how challenging it would be to care for two children with CHD, but we went forward with the pregnancy, trusting that God would see us through,” Katie said. “There were twenty people in the room, with my mom and husband in the corner trying to see what was going on. We weren’t sure he’d be able to survive after birth, but when they put him on my chest, I felt complete peace that he was going to be okay. We were told that at nine pounds, he was the biggest, loudest baby in the whole NICU!”
Dominic had a surgical shunt procedure at 2 months old, followed by the Glenn procedure four months later. Katie said people who haven’t heard their story would never know that her sons both have CHD. They are faithfully hitting all their milestones and acting as all good brothers do.
“Dominic does get winded very easily, and we just tell him to slow down and walk,” Katie said. “We tell the boys that Dominic’s heart isn’t completely fixed yet, and Miguel is really good about advocating for his brother. He tells everyone not to leave his brother behind. Dominic is the little fireball in our family – loud and very expressive. He’s a fighter, and he’s still fighting. He gets on top of Miguel, and they fight! They don’t hold back on each other.”
Katie has come to accept that neither boy’s CHD is her fault and uses her experience as a teaching opportunity for others. Sibley has helped the family come to terms with their circumstances.
“We had the opportunity to speak to a genetic counselor, but we declined,” Katie said. “We just accept where we are. It doesn’t matter where it came from. At Sibley, they’ve been so real and down to earth. They’ve become like a second family to me. Dr. Cardis has made himself so accessible to us, and that’s very comforting with two heart kids. Sibley advocates for my kids, and I couldn’t ask for anything else.”
Katie said she wishes she would’ve known more about CHD before she had her sons. She said she feels a responsibility to put her story out in the public, so that others can know that CHDs are the most common type of birth defect. She also advises all parents to live in the moment with their kids.
“I would tell other moms not to worry. Just take it all in and know it’s not going be this way forever,” Katie said. “Let them be a little mischievous. Let them sleep with you. Just love them. You never know. I had to get in touch with God because I blamed myself for a long time, but I know now it’s nothing I did. God gave me this life for a reason, and it’s to give my children the best life possible. People say I spoil my kids. Yes, I do! I want them to experience everything. I want them to see the world and live their life to the absolute fullest.”
For more information about Sibley Heart Center Cardiology and our pediatric cardiology specialists, click here.