The Miller family of Bowling Green, Kentucky, has a reason to celebrate Heart Month every day. Their daughter, Abigail, recently celebrated her first birthday — her “heartiversary” — with family and friends.
A year ago, her parents, Amanda and Tim, learned Abigail needed lifesaving surgery to fix defects in her heart — ventricular septal defect combined with transposition of the great arteries.
When Abigail was born, she was briefly placed on her mother’s chest. When a nurse said she appeared grey, she took Abigail and placed an oxygen mask on her face. The nurse noticed a “growling” sound as Abigail took some of her first breaths.
Abigail — the Miller’s third child and first girl — was then taken to the hospital’s neonatal intensive care unit (NICU). Tim and the boys left to go home and rest for the next school day. For Amanda, the wait began for news about their new baby girl.
Time to fly to Louisville for surgery
At around 2 a.m., a doctor told Amanda that she believed Abigail may have a hole in her heart and that she would need to have surgery as soon as possible. The “Just for Kids” Transport Team flight crew arrived to take Abigail to Norton Children’s Hospital in Louisville.
“The flight team was amazing,” Amanda said. “They did everything to calm us.”
Before leaving, a transport team member asked if Amanda had been able to hold Abigail.
“It kind of scared me in the moment,” she said. “I felt like, ‘Why do I need to hold her now?’ It wasn’t until later, talking with a Norton Children’s Hospital NICU nurse, that I realized they knew it would be awhile before I could hold her. I held her, and they left.”
Tim accompanied Abigail on the 30-minute flight. After landing, doctors and nurses met them at the plane. They helped Tim remain calm while they began to care for Abigail. Amanda was discharged from the hospital in Bowling Green and immediately headed to Louisville.
Surgery to fix ventricular septal defect and transposition of the great arteries
Abigail was diagnosed with dextro-transposition of the great arteries (d-TGA), a condition in which the two main arteries in the heart are reversed. She also had a large ventricular septal defect, a hole in the wall between the left and right heart ventricles.
Abigail’s first surgery was a balloon atrial septostomy. In a baby with TGA, the aorta and the pulmonary arteries are switched; oxygen-rich blood only flows to the lungs, while oxygen-poor blood circulates through the heart and body. The balloon septostomy widens a natural hole between the left and right atria (foramen ovale), which helps oxygen-rich blood reach the baby’s body until the arteries can be switched.
Norton Children’s Heart Center
With a long legacy of leading pediatric heart care, Norton Children’s Heart Center pursues our mission to keep your child at the heart of everything we do — while supporting the needs of the entire family.
Before Abigail’s second surgery, an arterial switch procedure, a Norton Children’s NICU nurse learned that the Millers’ two sons hadn’t met their baby sister yet.
“I’m forever grateful to the NICU nurses,” Amanda said. “They worked it out that the boys and I could see her in the back hallway before she went in for surgery. She was on a ventilator, but we got to touch her and kiss her. Her older brother was scared, and we were scared, too. We got to ride the elevator to the waiting area to her surgery. They still talk about how great it was for them to be able to do that.”
Experts who explained the situation clearly
Abigail was at Norton Children’s Hospital for 18 days. Amanda credits Ashley Neal, M.D., pediatric cardiologist with Norton Children’s Heart Center, as well as the countless nurses who kept a close eye on Abigail.
They kept the family informed of all risks and benefits of Abigail’s care. It helped Amanda become a “heart mom for a heart kid.” Amanda had some fear about going home to Bowling Green, but the staff helped her prepare.
“It was amazing how explanatory they were. They didn’t talk down to me. They showed me how to help her. ‘Here’s how you listen to her heart.’ They gave me a stethoscope and taught me how to count beats so I could know she was OK,” Amanda said. “Staff gave me their business cards and said to call 24/7 with any questions. That really helped me. I felt like we could do this and take her home.”
Care throughout Western Kentucky
Abigail is among the hundreds of children from Western Kentucky who come to Norton Children’s Heart Center for lifesaving care. The center sees 5,000 patients from across the commonwealth each year. A dedicated team of surgeons, doctors and other providers performs more than 17,500 procedures annually, treating congenital heart defects, heart failure and acquired pediatric heart conditions. The center also performed six heart transplants in 2017.
Western Kentucky heart patients benefit from Norton Children’s Heart Center without having to make the drive up I-65 to seek care. The center offers remote fetal tele-echocardiography, which enables a hospital or clinic to transmit live images of the heart to specialists in Louisville. Norton Children’s has two tele-echo locations in Bowling Green. For follow-up care, patients can then see one of the hospital’s cardiologists at Norton Children’s Hospital Outpatient Center on Second Avenue in Bowling Green.
Abigail is no longer on medications and comes to Louisville for cardiologist visits only every six months. She also sees a developmental interventionist to help her catch up on developmental milestones.
She attends The Kidz Club, a day care with medical staff who can help monitor Abigail while her parents run their business, Tim Miller Automotive. She loves playing a game with her brothers — throwing her toys so they can collect them for her.
In the past year, the Miller family joined Brave Hearts, a support group of families touched by heart conditions like Abigail’s. They’ve held several fundraisers for the Children’s Hospital Foundation through their business and attended events supporting the hospital, such as Dance Big Red.
“It’s been an interesting year,” Amanda said. “I wouldn’t change it at all. It’s made us a stronger family.”