Two-year-old Finley Jo Gunter is a heart warrior and cancer survivor, thanks to her bright spirit, the support of her family and the collaborative care she received at Atrium Health Levine Children’s.
A 19-Day NICU Stay and Open Heart Surgery
Finley’s parents didn’t learn she had Down syndrome and a congenital heart defect (CHD) called complete atrioventricular canal defect until the day she was born.
“They took her to the NICU [at the hospital where she was born] and did an echocardiogram and extra testing to discover both,” says Courtney, Finley’s mom. “I had extensive scans with my obstetrician and maternal fetal medicine physician, and nothing was discovered during my pregnancy.”
Finley stayed in the hospital’s NICU for 19 days, but her parents felt she needed more personalized care. After discharging from the NICU and knowing she would need follow-up care, they decided to transfer her care to Atrium Health Levine Children’s Hospital in Charlotte, where they met with pediatric cardiologist Dr. Aaron Prosnitz. They knew right away their daughter was in the right hands.
“Approximately 40 to 50% of all children born with Down syndrome have a congenital heart defect and 40% of those patients with heart defects have complete atrioventricular canal defect,” says Dr. Prosnitz. “This is one of the more frequent diagnoses we see here at Levine Children's.”
Prosnitz continued to monitor Finley’s care and told her parents she’d likely need heart surgery in the first few months of her life. When she was 7.5 months old, she underwent open heart surgery with pediatric cardiac surgeon Dr. Paul Kirshbom to repair the atrioventricular canal defect. Finley had a smooth recovery after heart surgery and went home just four days after the procedure. Her family couldn’t have been more grateful.
“Dr. Kirshbom and Dr. Prosnitz were our superheroes who took care of our daughter,” says Courtney. “We think the world of them.”
Levine Children's is uniquely equipped to care for patients like Finley, thanks to the organization’s dedication to strong multidisciplinary care.
“Children like Finley require comprehensive team-based surveillance and management, including developmental assessments,” says Prosnitz. “Many of our cardiac patients are seen in our cardiac neurodevelopmental program, which helps children after heart surgery by screening them for subtle developmental delays and connecting them with community-based programs that will help them surpass their delays and achieve their maximum potential. We are extremely proud to have the most advanced program of this kind in our region because patients like Finley deserve easy access to nothing but the best.”
Finley’s Stunning Leukemia Diagnosis
After recovering from heart surgery, Finley grew into an active, outgoing toddler.
“She’s so bubbly and friendly,” Courtney says. “She loves Bluey, Minnie Mouse, cows and playing with her babydolls.”
But on Aug. 31, 2023, everything changed. Courtney, a respiratory therapist who works with adult ICU patients, came home from work and noticed Finley had grayish coloring and had developed a rash.
Finley had been battling various illnesses over the past few months, but her lab work didn’t indicate anything abnormal. But on that day, however, Courtney intuitively knew something wasn’t right and immediately took Finley to her pediatrician. The pediatrician ordered lab work and a chest X-ray, then sent the family to Atrium Health Levine Children’s Brenner Children’s Hospital in Winston-Salem, part of the same health system where Finley received her heart care and closer to their home, for additional evaluation.
What came next was a “gut punch,” says Courtney.
“An oncologist came into the room and told us our child had leukemia,” she says. “I had expected some sort of infection, but cancer never crossed my mind. Hearing the words that my child has cancer will be forever etched into my brain. It’s a day I’ll never forget.”
Finley’s low white blood cell count likely contributed to her frequent illnesses.
Additional testing a few days later confirmed the diagnosis: Finley had acute myeloid leukemia (AML).
“AML in children is rare,” says Dr. Thomas McLean, one of Finley’s doctors at Atrium Health Levine Children’s and a professor of pediatric hematology and oncology at Wake Forest University School of Medicine. “In the United States, the incidence is about eight cases per million children aged 0 to 14 years. For reasons that are not well understood, the risk of AML in children with Down syndrome is 10- to 20-fold higher than children without Down syndrome.”
Finley’s Leukemia Treatment Plan
“Hearing the word ‘cancer’ was the worst thing ever,” says Courtney. “But Dr. McLean assured us that her leukemia was treatable and that they’ll take excellent care of her. They’ve done nothing less than that. It makes a huge difference. She’s in good hands.”
Finley’s treatment plan included six rounds of chemotherapy, each requiring a three week stay, followed by a week at home. Finley’s final chemotherapy infusion took place in mid-February 2024.
“The treatment for AML is intense and requires many weeks at a time in the hospital,” says McLean. “Finley has had several serious side effects, but through it all, she continues to smile, play and warm our hearts. She has an indomitable spirit. Even when she is sick, she makes us laugh. And laughter is the best medicine.”
“Dr. McLean has been awesome since day one,” says Courtney. “God put him right in our path. He’s upfront and personal. He’ll sit down with you and answer every question you have.”
Courtney and her husband stayed with Finley at the hospital through each 21-day chemo cycle, sleeping in her room with her every night.
“We never left her side,” she says. “We were emotionally, mentally and physically exhausted because our child is lying there and we didn’t know what her outcome would be.”
The family’s strong, supportive community helped them during trying times.
“Our family, friends and community have rallied around us — this has meant more to us than I can explain,” says Courtney. “They’ve hosted every fundraiser and benefit you can think of to raise money for us and Finley. We couldn’t do this without their support.”
Courtney and her husband are also grateful for Finley’s doctors, nurses, social workers and child life specialists.
“They’ve taken very good care of her and it means more than I can explain,” she says. “The whole oncology team is amazing and will do everything they can to provide the best treatment and care. They treat your little one as their own.”
Finley’s Prognosis
Despite her many health challenges in just two years of life, Finley’s outlook for the future is bright.
“Even though AML is a life-threatening cancer, most children with Down syndrome and AML respond favorably to chemotherapy,” says McLean. “In fact, her prognosis is better than children without Down syndrome who have AML.”
Prosnitz continues to see Finley each year to monitor her heart health. He says her prognosis is excellent.
As Finley and her family look ahead to the future, they are savoring every moment together.
“It’s a blessing to have a healthy kid after everything she’s endured in the 27 months she’s been on this earth,” says Courtney. “Finley is our little warrior.”
Her advice to other families facing similar circumstances: “Stay positive and keep your faith. The pediatric cardiology and oncology teams at Levine Children’s are amazing.”
Brenner Children’s Hospital is now part of Atrium Health Levine Children’s! Everything you know and love about your child’s care is staying the same, now with easy connection to an even greater family of care.
Learn more and see how the best kids’ care just got better.
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