- November 23, 2024
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Kaeden Mickens enjoys helping out at home, and feeding his younger brother DJ. Photo by Jacque Estes
Kaeden Mickens, after his second open heart surgery when he was six-months old, reaches out for his mom, Kaitlyn Smith. Courtesy photo
One of Kaeden Micken's prize possessions is a fire chief hat given to him by a Palm Coast firefighter. Photo by Jacque Estes
Kaitlyn Smith smiles as she watches Kaeden checking out fire fighter websites. Kaeden enjoys watching videos but his mom hopes to get him active in a camp. Photo by Jacque Estes
To stay hydrated, Kaeden Mickens has to drink twice as much water as most of us. His younger sister Elaina watches. Photo by Jacque Estes
Four-month-old, DJ Mikens opens his mouth in anticipation of the next spoonful of food headed his way. Feeding him is his 5-year-old brother, Kaeden Mickens. Kaeden had already had his first open-heart surgery by the time he was DJ's age, and was getting ready for his second.
“He has Hypoplastic left heart syndrome,” Kaitlyn Smith, his mother, explains. “The left side of his heart didn't develop, so he has two chambers instead of four, and a small aortic valve.”
Kaeden's brother, and15-month-old sister, Elaina, were both checked for the birth defect, and neither have it.
It's only when Kaeden shows you his “sexy man zipper,” the scar left from three surgeries (the third was December 2014), that you realize he has any medical problem at all, and that's the way Smith wants it to be.
“The thing right now is, he has no limits, and that's not normal,” Smith said. “He could go a month and be perfectly find, and then we could go to the doctor and be told he has to be indoors the next two months.”
Smith would like to send him to camp this summer while he is at his physical best.
“He has always been in and out of the hospital, and we have always gotten by, but we've never been able to give him something really fun,” Smith said. “There's Camp Boggy Creek, but he has to be seven to go there. There are more options -- when he is older.”
“Maybe I can go to fire camp,” Kaeden suggests.
Like many five year olds, firemen and fire trucks fascinate him. He watches fire safety videos and Fireman Sam, absorbing all there is to know about the profession and the equipment on the trucks. A fire at a house on his street gave him a chance to watch the firefighters in action, and he got some stickers and a plastic fire chief hat – a treasured possession.
“He has even attached an empty two-liter plastic bottle to his back for an oxygen tank,” Smith laughed.
Knowing that Kaeden could go into heart failure at any time, or a routine visit to the cardiologist could end up with an admission to Wolfson's Children's Hospital in Jacksonville, Smith grabs every normal moment she can, for her son.
“I want to keep his life as normal as possible. I can't keep him indoors,” she said. “I don't want him to say, 'oh no, I can't do that because of my heart,' if he can do something. He knows his limits.”
The first three open heart surgeries, at six days, six months, and the last December 2014, were scheduled to coincide with his growth. Surgeries will continue as needed, using his own organs for as long as possible.
“He's not on the transplant list yet, because he is healthy and strong,” Smith said. “Transplants get rejected and can have problems, so they want to work on his heart until they can't anymore.”
Kaeden will be in kindergarten at Belle Terre Elementary this year, hopefully with tales of camp to share with classmates. Smith said she is working with the Make a Wish Foundation and Dreams Come True.
The type of camp doesn't seem to matter to Kaeden. He likes sports and arts and crafts. Sport camps would require extra protective equipment for his chest. Because his condition can change quickly, he would require a physical before heading off to camp.
Smith is part of a Facebook advocate group. She mentors a 20-year-old mom in Georgia who's baby just had his first surgery, and she gets mentored by a 21-year-old who has had the surgeries herself.
“Everybody's case is different, of course,” Smith said. “But I like to know, if things are good – this is how it's going to be; if things are bad – this is what you can plan for.”
