WICHITA, Kan. (KSNW) – Knowing a child will have a chronic heart defect before birth allows parents to research and prepare ahead of time.
Open heart surgery led to monumental changes for one baby just a couple days after the procedure.
Today Rrobbie Nolan is an energetic 4-year-old who loves to play soccer and likes Power Rangers and dinosaurs.
You’d never know when he was 8-months-old he couldn’t sit up or roll over, and his parents knew open heart surgery was in their future.
“Terrifying. Absolutely terrifying,” remembers Robbie’s parents Sarah and Dustin.
They knew about their son’s three ventricular septum defects – or VSDs – early on in Sarah’s pregnancy.
“We were lucky going into it because we knew ahead of time. It wasn’t a surprise after birth so we could do all the research, talk to the doctors, we had all the resources we needed,” explains Sarah.
But they say they still knew there were a lot of unknowns.
Would the three holes close on their own?
Would Robbie be able to lead a typical life after surgery?
The family was able to stay at home in Wichita while a cardiologist monitored Robbie’s growth until he was 8-and-a-half months old and doctors said it was time.
“Going up there and making that first initial hand-off was rough,” remembers Dustin.
The family traveled to Kansas City for the procedure.
Dustin says, “You know you have friends and family that you lose but a baby’s a whole other ballgame. Very scary, But I mean – this kid is tough.”
Thankfully everything went just fine.
Doctors put a patch on the holes in Robbie’s heart and that changed his life.
Unable to sit up, roll around or crawl before the procedure, Robbie made huge gains in just days.
“Cracked sternum and all he’s trying to go and we’re just trying to get him to slow down and he just had the oxygen you know,” says Dustin.
Today Robbie lives a normal life free of restrictions and only has an annual checkup with his cardiologist.
His parents want others to not bear the burden of their children’s heart problems.
“Know that it’s not your fault, it’s not something you did. You always think he’s half mine, half hers obviously I contributed something that made this happen. Not necessarily,” assures Dustin.
Robbie’s parents also say they believe knowledge is power and are appreciative of the American Heart Association for all the research they fund to further research and improvements.