Rosemount boy bravely battles congenital heart condition
ROSEMONT, Minn. — Busy hands, belly laughs and a bubbling curiosity: 3-year-old Colton Sowle is bursting with energy.
"It's really just surreal — from where we started to where he is now," Colton's mom, Morgan Sowle said.
It's been a journey to get to this point. At her 18 week ultra sound, Morgan and Clint Sowle learned their unborn baby had a rare heart condition known as hypoplastic left heart syndrome, or HLHS. The congenital heart disease is a birth defect that affects the normal blood flow through the heart.
"We were initially told he had about a 2% chance of living at all," Clint said. "And a zero percent chance of normal life."
"It was honestly like a gut punch," Morgan said.
They got a second opinion at Mayo Clinic in Rochester. It was then they were refereed to Children's Minnesota thanks to the Mayo Clinic Children's Minnesota Cardiovascular Collaborative.
"That collaboration has been really nice," Children's Minnesota Pediatric Cardiologist Dr. Ian Thomas said. "It improves the quality of care for kids with congenital heart disease."
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Dr. Thomas and his team have been with the Sowles since the beginning – and just six days after Colton was born in July 2020, he had his first of several heart surgeries.
"It's just a blood flow issues right," Clint said. "The heart has to supply the blood everywhere and very often something's going to go wrong whether it be the lungs or another organ is going to have an issue. And in our case it was the gut."
During his hospital stay, Colton developed an infection that damaged most of his small intestine and a third of his large intestine. Doctors removed the damaged parts, but it led to a diagnosis of "Short Gut Syndrome."
"We were told he was going to be IV nutrition dependent forever," Clint said. "So That was another difficult thing, and we still had to look forward to another heart surgery at 6 months old."
After more than 100 days in the hospital, Colton was able to go home two months before his second heart surgery.
"He's made a lot of progress," Morgan said. "We still have our ups and downs with hospital stays and medical stuff. But with everything he's been through, you wouldn't really know. He's just such a little trooper."
A trooper who has defied the odds.
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"For Colton, there has been a lot of ups and downs," Dr. Thomas said. "He's had a lot of challenges but he has cleared those hurdles at every step."
After his second successful heart surgery, which was only a 10 day stay, Colton found more success.
"We went from 24/7, 365 nutrition dependent and now we're off 12 hours a day, weening even further to the point where we hope to be off by kindergarten," Clint said.
While his fight isn't over, the Sowles take it day by day.
"We still have some challenges to face, but it's just one day at a time and soak in every moment," Morgan said. "Which is kind of what we've been doing."
Colton will need a third heart surgery for his HLHS in the next 18 months. The timing depends on his Short Gut Syndrome continuing to improve, but in the meantime he's enjoying preschool and spending time with family.
"All the doctors have been wrong," Clint said. "I wouldn't count Colton out for anything."
Morgan and Clint hope Colton can continue to progress in the right direction and someday, give him a sibling.
