Grateful Heart: Derby family connects with others to help handle son’s defect

DERBY, Kan. (KSNW) – For parents of a child with a congenital heart defect, there’s no set path of treatment. The path they end up on will likely have its twists and turns and parents do their best to keep up.

They often look to other families dealing with the same condition to try to get an idea what to expect and they often learn that even with a similar condition, each child’s treatment is vastly different.

Caden Konecny is a the fifth grader who is more excited to tell you about his ability to crochet than he is to talk about his heart condition.

It was his mom Ashlea who was better at sharing the details.

“Finally, we went in and they thought he had bronchitis, and the resident was listening to him and found the heart murmur,” she recalls. “After that, it was a whirlwind.”

It was a pediatric cardiologist who would find Caden’s heart defect when he was about two months old – after he lost more than two pounds since his birth.

“It was kind of surreal because she finished the echocardiogram, and then, she said she needed to speak to the parents, and I kept looking at my mom like OK, go,” laughs Ashlea. “It was hard for me because he’s only two months old, and I’m like not me, I don’t want to go.”

Caden has type 2 truncus areteriosus, which means instead of the normal two vessels coming out of the heart there’s only one.

A surgery in 2007 put in a conduit to create a second vessel and also patched the hole in his heart.

That would lead to a series of medical issues that would land Caden on an ECMO machine for two weeks.

“At this point he was almost nine-months old and he could hold his head up he couldn’t roll over he couldn’t do anything so we had Rainbows come down and they did physical therapy. The first year was crazy,” says Ashlea.

Another surgery just a couple of years ago replaced that conduit with a larger one to accommodate Caden’s growth.

“Eventually, it’ll get to where it’s adult size, but at that point you start worrying about it narrowing or calcifying which could need to be replaced down the road,” worries Ashlea.

Ashlea says heading into surgery brought a lot of memories back.

“Going back into it you know more what to expect. We had the same surgeon, same doctors that remembered him because we were there for so long the first time.”

Caden’s family is now a regular participant in the Wichita Heart Walk to help spread the word and spread awareness because, as Ashlea says, congenital heart defects are more common than you’d think.

“Finding other people and having that connection that I can talk to and they understand – it’s life changing I think.”

Caden’s recovery has gone so well that he’s no longer on any meds and he’s down to visiting his cardiologist only once a year.

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