Colton Byrnes is 7 years old. He loves to sing and dance, and could probably perform the entire production of “Hamilton” right now if you asked him to (and you should probably ask him to at some point, because I bet it’d be good).
His parents describe him as a warm and loving child, but there’s another thing about Colton that you might not know if you just met him: he’s had more than 57 surgeries to date.
Again, he’s 7.
Not all of the procedures were invasive, but many were and all of them certainly disrupted what most of us would think a typical childhood should be.
“We joke in our family that Colton is the 20-million-dollar man, because cumulatively, that’s about what his medical care has cost during the course of his life,” his mother, Aubrey says. “He’s worth every penny, but that doesn’t mean that there haven’t been challenges medically, emotionally and financially along the way.”
Colton was born with a condition called VACTERL association. It is a condition that describes a wide range of congenital conditions that affect multiple parts of the body. The condition is a catch-all term for a variety of medical complications that present both short-term and long-term.
The condition affects every individual in different ways, and to be more concise, it’s incredibly complicated.
“Sometimes I forget that this isn’t everyone’s world and that most people don’t encounter the realities of what having a medically complex child can mean. Colton’s had multiple open-heart and brain surgeries. He’s had a tracheostomy and G-tube. He’s had tubes put in his ears, hand surgery and almost any other procedure you can think of,” Aubrey recounts.
“We first came to Gillette around the time that Colton was four years old. He was born with a tethered spinal cord. He had the initial repair when he was younger near our home in Sioux Falls. But when he was diagnosed with scoliosis, we discovered that Colton’s spinal cord had re-tethered and were advised to seek care at Gillette. There, we met Dr. Peter Kim, who performed Colton’s most recent surgeries for tethered cord and a condition called Chiari malformation.”
“As a parent who has spent a fair amount of time in more than a few medical facilities, I think I have the experience to say that Gillette is a very special and unique place,” Aubrey says. “When you have a child who has complex medical needs, out in the world you often feel as though you’re constantly explaining from the outset of most interactions. Like there’s a hill that you persistently have to climb. We’ve never had that experience at Gillette. To show up and have people see you and understand is one thing. To have them be able to provide the care you need for your child is another.”