Born weighing almost 10 pounds, Caden Konecny arrived pink and loud. His mom, Ashlea, loved everything about her first-born child, except his struggles to breastfeed.
Perhaps she was doing something wrong?
At Caden's six-week checkup, he was down to 7.5 pounds. A few weeks later, a bad cough landed him in the hospital.
"He sounded like an old man trying to breathe," Ashlea said.
Doctors suspected that Caden had bronchitis. Soon, a doctor noticed something wrong with his heart. A pediatric cardiologist became involved, prompting more tests.
Hours later, Ashlea and her husband Paul learned that Caden needed open-heart surgery.
Caden was born with one artery exiting his heart instead of two. Of all heart defects babies can be born with, this happens in less than 1 percent of them.
The condition is called truncus arteriosus. It's caused by a glitch during pregnancy. The pulmonary artery and aorta begin as one vessel, then divide into two as the heart develops. Caden's never divided, so he was missing the pulmonary artery that carries blood from the heart to the lungs.
During the operation, doctors would create a new pulmonary artery. They also would patch another problem, a hole between the heart chambers that allowed oxygen-rich and oxygen-poor blood to mix.
Adding to the drama, such a procedure couldn't be done at their local hospital in Derby, Kansas. Caden had to be transported to Kansas City, three hours away.
The surgery went well, or so it seemed.
After his breathing tubes were removed, the patch to the hole became dislodged. A second surgery was needed to repair that. Six weeks later, they returned home to recover, but that was short-lived. Something still didn't seem right, and after a weekend with baby Caden screaming nonstop, they drove the three hours back to Kansas City.
Doctors said Caden was in heart failure again. He had his second open-heart surgery, repairing the new pulmonary artery. His chest was too swollen to close after surgery, so doctors covered it with bandages overnight.
During the night, his heart stopped beating, and doctors manually massaged his heart for 45 minutes before it restarted. He spent the next eight days connected to a machine that breathed and pumped blood for him.
"They talked about possibly having to turn off the machine if things did not improve," Ashlea said. "They talked about how he could have brain damage because he had CPR for so long."
Three and a half months after Caden was hospitalized for his first heart surgery, he went home. Unlike that initial trip home with a fat, seemingly healthy baby, the Konecnys faced all sorts of challenges.
Caden had a feeding tube and required twice-daily injections of blood thinners, as well as other medications. He couldn't hold up his head or roll over like other kids his age, and he couldn't swallow because his vocal cords were temporarily paralyzed. A variety of specialists visited the house to help him overcome those challenges.
Fortunately, their hard work – and Caden's – helped him recover. He started eating solid food and eventually only took water pills and blood pressure pills. When he started school, he got extra help, as children who have been on a heart and breathing machine often have learning and processing difficulties.
In 2015, Caden turned 9. He'd outgrown the pulmonary artery doctors had put in, so he needed a new one. That required his third open-heart surgery.
Ashlea was scared, of course, remembering all that went wrong last time and the challenges of recovery.
The worry was for naught.
Surgery was uneventful and now Caden, who turns 12 this month, is off all medications. He visits the cardiologist only once a year for a checkup.
As he grows into his adult height, he'll eventually need yet another pulmonary artery.
"I don't think about it much," Caden said, "though I'm a little worried about it."
Caden continues to stay busy with school, playing the violin, reading and playing board and computer games. He even learned to crochet like his mom, and is making a blanket. While his younger brother Cameron is usually found outside playing sports, Caden isn't interested – a good thing considering he's not allowed to play high-contact sports.
"I like making movies and writing historical military fiction," Caden said.
Caden and his family have participated in the Wichita Heart Walk since he was 2, several times as the child spokesperson. He was also part of an American Heart Association survivor campaign with his maternal grandmother, who also had open-heart surgery when she was a child.
Ashlea often talks to other "heart moms" when they need support for a child's congenital heart defect. About 40,000 U.S. babies are born each year with a heart defect, about eight in every 1,000 babies.
Through her crochet community, Ashlea has shared Caden's story and a heart surgery doll she made to include tubes, bandages and an incision. She modified the original doll design for those who want to help friends or families going through heart surgery, or to donate to a children's hospital.
Caden's heart problems have taught her to be more accepting and less judgmental of others. And "I value the friends we've made because of this," Ashlea said.
Stories From the Heart chronicles the inspiring journeys of heart disease and stroke survivors, caregivers and advocates.
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