Starting school was the furthest thing from Anita Brainard’s mind as she reflected on her 5-year-old son Rian’s life to this point – 4 open heart surgeries, multiple setbacks and recoveries, visions of him with oxygen tubes and other breathing treatment devices, and countless hospital visits, all before his 5th birthday.
But now that his first day of kindergarten at Champion Central Elementary School is here, the emotions are stirring.
“He’s come such a long way, and I’m very proud of how he’s made it this far,” Anita said. “I’m excited for him, yet scared and nervous about the things I won’t be able to watch over, like gym class and the playground. I also worry about how he’ll do socially because he’s significantly smaller than the other kids, and if he’ll be able to keep up with his classmates.”
Rian was born with a rare heart condition that just one generation ago could not be treated.
Today, thanks to medical advances and convenient access to cardiac specialists at Akron Children’s Hospital, the youngest kid in his school with a pacemaker loves to jump on trampolines and has a thirst for math, reading and spelling.
“I’m anxious to get him off the bus to see how his first day went, and I’m hopeful that he does well, is accepted by the other children and has a good time,” said Anita. “I just want him to be like a normal kid.” .
She’s comforted knowing Rian’s older sister, Karissa, a 4th grader at Central, will be in the same school this year.
“We’ve treated Rian his whole life,” Dr. Vande Kappelle said. “He was in the NICU from birth after being diagnosed with a congenital heart disease with a lot of variants – his on the more severe side of the spectrum.”
Dr. Vande Kappelle said there’s a 1 percent chance a child will have some heart defect at birth, and a less than 0.1 percent chance of seeing Rian’s condition, which he described as a “double inlet left ventricle.”
Essentially, Rian has a single ventricle when normally there’s 2. The prescribed treatment was a series of heart surgeries that ultimately changed the way his heart and lungs worked to make his 1 good ventricle do the work of 2.
It involved using passive blood flow directly into his lungs to avoid being routed through his heart.
“It’s pretty remarkable how far we’ve come in pediatric cardiology even since the 70s when there were very limited options for kids with this condition,” Dr. Vande Kappelle said. “We’re finding out more and more about the longevity of the first children who’ve been treated for this condition, and they’re now entering their 40s. For Rian, we continue to monitor him closely, but he is set up to do very well for a long period of time.”
That’s encouraging and welcome news for a worried mother.
“I couldn’t imagine taking my son anywhere else,” Anita said. “This whole situation with Rian was unexpected, and my husband and I have been so well treated by the care team and the doctors, each of them who’ve made themselves available at any time to answer our questions. Everyone has been great to us, and we couldn’t have made it here without the team at Akron Children’s.”