Even with the latest technology, sonograms and tests, a heart defect can still go undetected at birth.
But some parents say not knowing what they’d face after birth was a blessing.
It was a nurse who noticed something might be wrong when she heard Greyson Cooper’s cry right after birth.
That quickly led to a rare diagnosis that began the Cooper family’s journey to fixing Greyson’s heart defect.
Right now, you’d never know 6-year-old Greyson has been through two open heart surgeries to correct his persistent truncus arteriosus.
“It’s like they know how special they are,” says Tyler Cooper, Greyson’s dad. “They seem to love life more than the average person.”
An arterial trunk in Greyson’s heart failed to divide into separate structures, resulting in one “trunk” that provides mixed blood to the heart.
The condition is rare.
“People ask how do you deal with it? What’s the choice? What’s the option? That’s all you can do is deal with it. It is what it is,” says Tyler.
A quick call to a relative who’s a surgeon shared what the family might expect in the coming days and weeks, including the possibility of numerous doctors want to listen to Greyson’s heart.
“He was right,” laughs Tyler. “Everytime we went to the hospital it seemed like we had 5-10 extra doctors coming into the room just to listen to his heart.”
At just a couple weeks old, Greyson went through his first surgery at Children’s Mercy in Kansas City.
“It was a nightmare is what it was. Everyone is sitting there and thinks they have to talk. There’s so much conversation going on, and I finally had to leave because I couldn’t deal with the chatter anymore.”
That procedure went well, but it only repaired Greyson’s heart until he outgrew the conduit.
Which meant another surgery when Greyson turned four.
“It’s hard to hand your kid over to someone who’s gonna cut them open, stop their heart. It took me awhile to grasp that they were going to stop his heart,” says Tyler.
Thankfully, that procedure went well also and Greyson’s current conduit should last him till adulthood.
Greyson’s parents advise others to seek out support groups offered by the American Heart Association and also to ask a lot of questions.