When Hardy had his first surgery as a toddler to remove a subaortic membrane, nobody could have predicted how difficult the following years would be for him and his family. By the time he needed a third surgery at the age of 5, they’d learned that Hardy is autistic and nonverbal, which introduced a whole new set of challenges in managing his CHD.
“The third surgery was a completely different experience from the others,” mom Rachel said. “The sensory issues with autism make him very irritated and being stuck in a hospital bed with wires and needles was way more intense for him than average kid. Because he’s nonverbal, we aren’t able to explain what’s happening, which causes fear and makes it harder to manage him. His recovery time was extended because of how unhappy he was.”
Rachel and Daniel learned a lot about Hardy between that surgery and the last one, which was one year ago. They were able to better communicate his needs with the behavioral therapy team at CHOA and together they kept him mentally occupied so that his recovery was faster. Rachel was pleased to learn that this team was in place to support them during an uncertain and stressful time, and she welcomed their input into Hardy’s care.
I tell people I hope you don’t ever have to stay in the hospital, but if you ever have to, that’s the place to go,” Rachel said. “I would just stand outside the ICU and watch. I was so impressed by the kindness and knowledge of the nurses. It’s such a big place, you know it must be hard to make people feel special and like individuals, not just another number or case. But they made us feel special every time. It was a good experience for us. They helped us feel at ease about this very serious thing we were going through.”
Brian Cardis, MD, has been Hardy’s pediatric cardiologist since he was born. Rachel said he’s been a great fit for their family since the beginning, taking a lead role in educating them about their son’s condition and the signs they need to look out for that his heart is not functioning as it should. Rachel said she appreciated him and his staff making themselves available any time she needed to talk or ask questions.
“Dr. Cardis will always pull out an anatomical drawing of the heart and jot notes down for us, to explain what’s going on as clearly as possible,” Rachel said. “It meant a lot to me, especially when we were getting bad news. Sometimes I’d leave the appointment and think, what did he even tell me today? I could always call the office and ask them to say it again, and they were happy to do that. I’ve saved every drawing he’s done for us over the years. It’s nice to see all the changes that have happened, almost like a diary.”
When Hardy comes into the office for follow-up appointments, Dr. Cardis and his staff take extra care to address his particular needs. The echo tech sets up her room so it’s warm, dark and quiet, with all the sensory irritations toned down as much as possible.
“She speaks to Hardy in a calm, quiet voice, and he’s able to let her do her job,” Rachel said. “It makes it a lot easier on all of us. It’s so nice to know someone’s taking his specific needs into consideration.”
In addition to the support of the medical staff at Sibley, Rachel says their families and community have been behind them every step of the way.
“Our town is not very large, so when someone’s son is having his fourth open heart surgery, it’s a big deal to the whole community,” Rachel said. “Last year, they did a huge fundraiser for us called Hearts for Hardy. They sold bread, bracelets, heart collector’s items. I’m very thankful for everyone’s support. It would’ve been a much harder journey without it.”
For more information about Sibley Heart Center Cardiology and our pediatric cardiology specialists, click here.