Bess is the only child of Todd and Lee Margaret Johnson born without a heart condition. Todd and Lee have more nights and days than they can count at Norton Children’s Hospital — overnights on top of day trips from their Bardstown home for their children’s chest X-rays, lab work, outpatient cardiac catheterizations, surgeries and more.
Edie was born with a hole in the center of her heart, Ike was born with half a heart and Annie had her first heart transplant when she was just 1 year old. From Edie’s heart repair in 1992 through Annie’s second of two heart transplants in 2010 to today, the Johnsons have experienced decades of advancements in pediatric heart care.
“Edie was the beginning of a very long continued relationship with Norton Children’s Hospital and the group of special people there who take care of heart kids,” Lee said. “The first eight months of Edie’s life was spent trying to keep her out of heart failure.”
During Edie’s first visit, Norton Children’s Hospital had five floors, and physicians performed surgeries across the street at Norton Hospital.
Today, surgeons operate on patients at Norton Children’s Hospital, which now has eight floors. The “Just for Kids” Critical Care Center has expanded and is the only pediatric intensive care unit of its kind in Kentucky. Located on the fourth floor and adorned with colorful ceiling murals, over the years the center has evolved into a place that is equipped to care for the most fragile patients.
“A year’s time in the medical field and the cardiac advancements are huge,” said Lee, a first-grade teacher. “For us, it is extremely encouraging.”
Norton Children’s advances with heart medicine
Pediatric surgery suites have been upgraded, and there are 26 beds in the “Just for Kids” Critical Care Center with designated beds for recovery from heart surgery. Physicians, nurse practitioners, nurses, nurse educators, respiratory therapists and pharmacists are specifically trained and dedicated to providing the best care to patients with heart conditions and those requiring surgery.
“As medicine has advanced and operating rooms have moved, there are staff members who have been there the whole time,” Lee said. “There are so many people who have been through this with us from the beginning. They truly are our family.”
When she was younger, Annie would announce her arrival at Norton Children’s Hospital for her monthly visits and she would excitedly roam the halls in her wheelchair.
“None of our children think it’s a big scary place,” Lee said. “Annie thinks it’s the biggest treat in the world. She is treated like a queen.”
The Johnson family also is part of Brave Hearts, a support group of local families united by their children’s fight for life after being born with complex congenital heart defects that required surgery. As a team, supported by the Children’s Hospital Foundation, the Brave Hearts parents and children provide support for other families.