Letting loose in his battery-powered Dodge Ram pickup is freedom for 7-year-old Kaden Kruciak of Cibolo, TX. And if ever a kid deserved to feel the wind in his hair—and the dust and dirt of off-road driving—it’s Kaden.
Diagnosed in-utero with a rare birth defect called congenital diaphragmatic hernia (CDH), meaning his kidneys, liver, stomach, pancreas and intestines developed in his chest cavity, instead of his abdomen, Kaden faced a 5% chance of survival at birth.
But he arrived via emergency c-section full of fight, managing a cry no one thought possible with lungs only two-thirds developed. That fighting spirit carried him through what his parents, Stephanie and Todd, had been prepared to expect: multiple surgeries to repair and relocate their son’s organs to their proper homes.
It also carried Kaden through the unexpected, including a stroke when he was 3 days old, hydrocephalus (fluid build-up in his brain after the stroke), collapsed lungs, blood-clotting and feeding issues.
Looking at Kaden now—a mini-me of his Dad, down to the kid-size work truck, equipment trailer and shirt branded with the logo of the family’s landscaping business—you’d think that’s all behind him. But it’s not.
Kaden still sees 13 specialists at The Children’s Hospital of San Antonio and other clinics; they monitor his organ functions and help manage the ongoing medical, developmental and behavioral after-effects of all that he has endured.
First it was ensuring Kaden’s nutrition through a feeding tube, which Stephanie mastered through research, persistence, creativity—and a blender to beat all blenders.
Then it was getting Kaden to walk, which came at 19 months, after he had learned to drive. Stephanie laughed at the memory: “He received a power-wheel truck from my parents when he was 17 months old. He couldn’t even walk yet, but he was driving it. It was spectacular to see how great a driver he became.” (After running that truck into the ground, Kaden is racking up miles on a newer model.)
Now the focus is on getting Kaden, a very bright child, to grade-level at school. Complicating things are disrupted sleep—Kaden burns calories at twice the rate of other kids, making midnight snacks mandatory—a seizure disorder and issues with attention and anxiety that may be attributed to stroke.
“I’d like to say that after seven years we’ve figured everything out, but we really haven’t,” Stephanie said. That’s where the village comes in.
Kaden’s health journey has been everyone’s health journey, with the team at Children’s Hospital and the church community Todd describes as a “backbone” holding close a big, hands-on family.
To support Kaden, Todd’s mom brings the insights of a retired kindergarten teacher who also ran a group home for patients with brain injuries. And Stephanie’s parents own a 130-acre ranch outside San Antonio, where Kaden can tear around on two wheels … or four.
Then there is his sister, Kendall, younger by a year, and 12 cousins, all close in age. These are Kaden’s cheerful wingmen, who sometimes cut him slack, and sometimes don’t, as it goes with those who love you the most.
“When you have a kid like Kaden, and odds aren’t always in your favor, you have to be 100% optimistic,” Stephanie said. “Rather than look at the big picture all the time, we just look at the small steps in the journey.”
That has been the couple’s approach since the first sonogram glimpses of their son, early in Stephanie’s complicated pregnancy. When they learned at 16 weeks they were having a boy, Todd proposed the name “Kaden,” from a Gaelic word that means “fighter.” Four weeks later, upon diagnosis of CDH, the suitability of the name became clear.
Todd said, “We have seen our son go from ‘not expected to survive,’ to being told he would not make it through the night, to being on life support, to having multiple surgeries. Everything we heard Kaden would never be able to do … he has done.”
And he has lots more to do.
“Kaden is spirited and rambunctious and wild,” Stephanie said. “We have a lot of hope for him, and we are going to stay faithful and positive, so we can get him to where he needs to be—and where he should be. We have pretty high expectations.”