Lainey: Embodying Resilience Through Congenital Heart Disease

Kelsey and Lucas know a thing or two about perseverance.

The high school sweethearts have faced life’s challenges side-by-side.  Lucas’ baseball career took them through several cities before landing back in his hometown with the Colorado Rockies. Their 3-year in vitro fertilization journey ended when Kelsey became pregnant with their baby girl, Lainey, in 2024.

At the couple’s 20-week anatomy scan ultrasound, they were faced with yet another curveball. They learned their daughter would be born with several heart conditions. The very next day, they had an appointment at the Colorado Fetal Care Center at Children’s Hospital Colorado for scans to confirm and learn more about their daughter’s diagnosis: an interrupted aortic arch, the main blood vessel supplying blood to the body.

Understanding a congenital heart disease diagnosis

After taking time to process this unexpected news, Lucas and Kelsey got to work. For the rest of Kelsey’s pregnancy, the couple poured themselves into learning everything they could about Lainey’s condition and congenital heart disease. They familiarized themselves with Children's Colorado, including taking a tour of the cardiac intensive care unit (CICU).

They knew Lainey would spend a month after delivery in the CICU, so they wanted to get familiar with what to expect to ease some anxiety. They had monthly appointments at the Colorado Fetal Care Center to check on Lainey’s heart as they got closer to their due date.

“The doctors were absolutely phenomenal,” Kelsey says. “Everybody was so amazing. They made me feel like I had a normal pregnancy, and I felt like it was the first time people were really excited we were having a baby.”

Lucas added, “The doctors would always tell us, ‘This is stressful, but this is what we do every day.’”

Preparing for birth and pediatric heart surgery

When the day came for Kelsey and Lucas to welcome Lainey in August at the Colorado Fetal Care Center, our multidisciplinary care team was ready to immediately check Lainey after birth and prepare for her first heart surgery. Eight days after she was born, Lainey had her first heart surgery to repair her arch. Shortly after, she had a second surgery to widen the arch even more.

"Lainey didn’t have a straightforward course,” Emily Downs, MD, says. “Her family is amazing. They really did prepare themselves for all the twists and turns that they could.”

Kelsey has shared their entire journey on social media to connect with other moms on similar medical journeys and plans to continue raising awareness about congenital heart disease. She even connected with two other Children’s Colorado families with babies just weeks apart from Lainey also on a heart journey.

“It’s been so nice to have somebody to talk to during Lainey’s procedure to offer me comfort since they know what we’re going through,” Kelsey says.

Going home after interrupted aortic arch treatment

Lainey spent 25 days in our CICU to grow and get healthy enough to go home, which is exactly what she did. Now she needs only regular check-ins with her team at Children’s Colorado to monitor her health. She’s a happy and smiley baby who eats and sleeps well — exactly what Kelsey and Lucas hoped for when they started their parenting journey together.

“She is the happiest baby for everything she has gone through,” Kelsey says. “It shows how resilient these little babies are.”