Ryan French always said he hoped none of his kids would have a heart condition. Diagnosed at 6 weeks old with a large ventricular septal defect (VSD), or hole in his heart, Ryan underwent open heart surgery when he was just 3 months old. He knew how serious CHDs could be. His first two children showed no signs of CHD, but his third child, Connor, was a different story.
Ryan’s wife, Alicia, remembers that technicians spent two hours getting images of Connor’s heart when she was 26 weeks pregnant, but his position did not allow them to see what they would discover two days after his birth. He was born with Tetralogy of Fallot with a double outlet right ventricle and parachute deformity of the mitral valve. At 3 months old — just like his dad — Connor underwent surgery to repair his CHD.
“It really didn’t hit me until we were admitted that Friday night in September,” Alicia said. “He had done so well. He was gaining weight, he was never on oxygen, never in the NICU. He was perfect! But when they said he wasn’t coming home from the hospital until he had surgery and that he was in heart failure, that’s when I knew it was very serious.”
Alicia was able to lean on her husband and her mother-in-law for support. She knew how far Ryan had come – he is now an airline pilot and father of three – and she believed that Connor would do just as well.
Dr. Michael McConnell is Connor’s pediatric cardiologist, and Alicia appreciates his calm demeanor and commitment to keeping the family informed.
He answers all our questions and explains everything slowly, so you remember because your mind is all over the place,” Alicia said. “The communication is amazing. It matches the parents’ level of medical knowledge, which really helps.”
Alicia recommends taking another family member along to all cardiac appointments. She was able to have both her husband and her mother-in-law present at Connor’s appointments, which she says made a big difference to her.
“You are so nervous before every appointment, thinking the news will be bad,” Alicia said. “By having all three of us there, I knew that if one of us missed something, the others would get it. I trusted them to help me hear, to be my tape recorder.”
Alicia also recommends getting involved with CHOA’s CHD family support group, Kids at Heart. She says the support and knowledge of other moms of kids with CHD has been invaluable.
Open heart surgery is not the end of the process,” Alicia said. “There are still many follow-up services that your child will need, and the Kids at Heart moms can give you recommendations and share what they know.”
Connor is now a healthy 2-year-old who is obsessed with trains and loves to do anything and everything that his sisters do. Dr. McConnell has reassured Alicia that she shouldn’t treat him any differently from any other child his age. He has no restrictions, and she is committed to letting him grow and explore, while also knowing that when he grows older, she will stress to him the importance of going to his doctor appointments.
“We don’t treat him like a heart kid, but his heart condition is part of him,” Alicia said. “I know my kid has a very special scar, and I can’t picture him without that scar. His scar is very beautiful to me. It means, ‘Something tried to kill me, but I overcame it!’ I want him to look up to his dad and know that his heart condition is not going to stop him from doing anything he wants to do.”
For more information about Sibley Heart Center Cardiology and our pediatric cardiology specialists, click here.