Morgan and Clint were excited to become first-time parents. They never expected their journey to parenthood would include their son being diagnosed in the womb with a rare and complex congenital heart defect. But with determination and The Kid Experts® in the cardiovascular program at Children’s Minnesota, their 3-year-old heart warrior Colton has fought through the many challenges he’s faced in his young life.
Diagnosis before birth
Colton was diagnosed with hypoplastic left heart syndrome, or HLHS, at Mayo Clinic by Dr. Patrick O’Leary, a pediatric cardiologist, following an ultrasound at 18 weeks. In babies born with HLHS, the chambers and arteries on the left side of the heart are small and underdeveloped with valves that don’t work properly.
Children’s Minnesota and Mayo Clinic Children’s Center collaborate in the care of children with congenital heart disease, like Colton, through the Mayo Clinic – Children’s Minnesota Cardiovascular Collaborative. Dr. Elizabeth Stephens, a congenital cardiovascular surgeon at Mayo Clinic, met with the family at Mayo Clinic to discuss the surgical pathway for children with HLHS. She explained the Collaborative and that the first surgery would take place at Children’s Minnesota. Morgan’s OB-GYN, Dr. Mary Anne Jacob at Diamond Women’s Center, referred the family to the Midwest Fetal Care Center (MWFCC), a collaboration between Allina Health and Children’s Minnesota.
All things considered; Morgan says the remainder of her pregnancy was relatively smooth. She gave birth to Colton via Cesarean section (C-section) on July 31, 2020, at The Mother Baby Center in Minneapolis, a partnership between Allina Health and Children’s Minnesota. This allowed Colton to receive the care he needed in the Cardiovascular Care Center (CVCC) at Children’s Minnesota immediately after he was born. The next day, Morgan got to hold Colton for the first time.
“Holding him the first time is indescribable. As soon as he was in my arms, I knew I could never love anything more than this,” remembers Morgan.
Surgery at six days old
The common care plan for babies born with HLHS is a series of three surgeries to reconstruct the heart to make up for the defects – a series of procedures Children’s Minnesota helped pioneer in 1985.
Dr. David Overman, chief of cardiovascular surgery at Children’s Minnesota, and Dr. Stephens from Mayo Clinic, jointly performed the first of those surgeries, called a Norwood procedure, when he was 6 days old.
“The first surgery was long, so it was a lot of waiting. We were obviously very scared and worried,” said Clint.
Thankfully, the surgery went well. But, in the weeks that followed, Colton had ups and downs.
Infection leads to new syndrome
While at home one night, the family got a call from the hospital. Colton had developed an infection in his intestines. The first line of treatment was antibiotics. Unfortunately, they didn’t work, and the infection damaged most of his small intestine and 33% of his large intestine. The damaged portions had to be surgically removed and led to Colton being diagnosed with short bowel syndrome. With that much of his bowel missing, he needed to get nutrition through an IV.
“The infection was the scariest part of our first hospital stay with Colton,” says Morgan. “We had a new syndrome to navigate with a lot of unknowns. I’ve yet to this day found another kid in the U.S. with both HLHS and short bowel syndrome.
Going home
Thankfully, Colton’s condition improved over the next several weeks and months. As their son got stronger, Morgan and Clint were trained in how to care for their son’s serious heart condition and short bowel syndrome at home. Finally on Nov. 10, 2020, after 103 days in the hospital, Colton was healthy enough to go home.
“It was a great feeling to bring Colton home. There had been times when Clint and I didn’t know whether we would come home with a baby. We enjoyed spending some ‘normal’ time with him before going back for the next surgery,” describes Morgan.
It was only two months later, January 2021, when Colton returned to Children’s Minnesota for the next surgery in the HLHS series, known as the Glenn procedure. Once again, Drs. Overman and Stephens performed the complex surgery together. The procedure went well with no serious issues and Colton was back home in 10 days.
Over the next couple years, Colton was readmitted to Children’s Minnesota for various medical issues, including a serious blood clot, infections and repairs to the central line that’s used to give him medications and fluids, as well as other illnesses. In mid-2022, the family traveled to the University of Nebraska Medical Center in Omaha where a surgeon was able to reconnect what remained of Colton’s intestines, improving his quality of life.
Preschool and what’s next
Today, Colton is doing well. He’s not yet a candidate for the third surgery in the HLHS series, called the Fontan procedure. However, if his short bowel syndrome continues to improve, his care team is hopeful surgery discussions can begin sometime this year. In the meantime, he enjoys going to preschool, family outings to the zoo and visiting family.
“Even with everything he’s been through, he’s such a happy kid who loves laughing and dancing,” said Morgan. “He’s strong minded and that gives him the strength he needs to get through whatever hurdle is next.”