Kelly describes her daughter Evelyn as the sassiest 4-year-old she knows. From the outside, you wouldn’t know that Evelyn was born with a hole in her heart, had a pacemaker before the age of 1 and had eight heart surgeries by age 2. Her journey has been challenging, but her resilience combined with the expert care and compassion of Children’s Minnesota, has Evelyn running circles around her family today.
Diagnosis during pregnancy
Evelyn’s care journey began before she was even born. Kelly was at her 20-week ultrasound at her clinic in Duluth when the scan showed a problem with her baby’s heart. Kelly was referred to the Midwest Fetal Care Center (MWFCC) in Minneapolis, a collaboration between Allina Health and Children’s Minnesota.
At MWFCC, Evelyn’s diagnosis was confirmed – she had a congenital heart defect called completed balanced atrioventricular septal defect (AVSD). This meant the chambers of her heart didn’t form correctly and there was a large hole in its center.
The rest of Kelly’s pregnancy was about as typical as could be given the diagnosis. In May 2020, Evelyn was born at The Mother Baby Center in Minneapolis, a partnership between Allina Health and Children’s Minnesota.
Challenging first months of life
Thankfully, Kelly and her husband Ross were able to bring their new baby home a couple days after birth. The plan was for Evelyn to have surgery to fix her heart defect around 6 months old. But plans changed. At 2 months old, she had to be admitted to the hospital because she wasn’t growing as expected. And at 3 months old, the care team decided it was time for surgery to repair her heart.
Unfortunately, the first repair didn’t last as expected, and by 7 months, Evelyn needed another surgery. This time, the doctors decided a repair alone wouldn’t be enough, and she received an artificial heart valve to replace a damaged valve. Later, she received a permanent pacemaker after experiencing complete heart block.
Evelyn’s first year of life was incredibly tough. She spent several months in the Cardiovascular Care Center at Children’s Minnesota, endured three heart surgeries, a chest infection and many bedside procedures. Despite these hurdles, she was discharged in March 2021.
Three more surgeries and cardiac arrest
In April 2022, a new challenge came up when Evelyn developed an infection in her pacemaker wires. She was quickly taken to Children’s Minnesota, where her care team decided to remove the pacemaker and clean out the infection. This required three more heart surgeries in just three weeks.
Then in May 2022, Evelyn went into cardiac arrest. Thankfully, her care team stabilized her quickly and six days later she was discharged, just in time for her second birthday.
Resilience plus specialized care
Caring for kids with complex heart defects like Evelyn’s requires a team of highly specialized experts. In addition to her heart surgeries and procedures, Evelyn has also received physical, occupational, speech and feeding therapy.
“The community at Children’s Minnesota is beautiful and they truly care about our babies. I’m forever grateful to the 4th floor [Cardiovascular Care Center] for saving my daughter’s life,” said Kelly. “You’d never know the battles she’d overcome until she lifted her shirt to show her warrior scars.”
Evelyn’s cardiologist, Dr. Charles Shepard and heart surgeon, Dr. Robroy MacIver, made a lasting impact on the family.
“These two incredible people played a huge factor in how our daughter is today. Their bedside manners are kind, caring, gentle and understanding,” said Kelly. “I can truly say they care about my daughter as if it were their own.”
Stories like Evelyn’s make it clear: your donations matter.
Your donations make it better in so many ways. With your help, we can provide all the little things that help a child smile when they’re in the hospital. And we can provide the big things, like cutting-edge technology and innovation — the kind that saves lives. With your help, we can surround our patients with healing therapies and support services that keep their families strong when they need it most. Donate today at www.childrensmn.org/give.
