Three-year-old Eryka Evans is what her mom describes as a “ball of fire.” The tiny heart warrior loves sparkles, tutus, dancing, music, bubbles and “cooking” with her toy kitchen set. You’d never guess this lively, happy little girl has had multiple open-heart surgeries.
“Eryka is a ray of sunshine,” says her mom, Sharese. “She is the definition of joy. She’s love in a little body.”
Eryka’s Diagnosis and First Heart Surgery
At 23 weeks pregnant, Sharese was referred to a maternal-fetal medicine specialist at Atrium Health Women's Care after her care team discovered a problem with Eryka’s heart. The team suspected hypoplastic left heart syndrome, but wouldn’t know for sure until she was born, so Sharese and her unborn baby were closely monitored until delivery.
On Aug. 6, 2020, Eryka made her way into the world, weighing 8 pounds, 10 ounces.
“They immediately took her to the NICU to get her vitals,” says Sharese. “We didn’t see her for two hours.”
She would need surgery, and quickly. At just five days old, Eryka had her first open-heart surgery.
Eryka was then diagnosed with an interrupted aortic arch, which means part of the aortic arch is missing, and a massive ventricular septal defect (VSD), a hole in the wall between the two lower chambers of the heart. This congenital heart condition is rare and complex, says Dr. Thomas Maxey, a pediatric cardiothoracic surgeon at Atrium Health Levine Children's Congenital Heart Center.
Maxey explained the risks and benefits of the surgery to Eryka’s family and said he would do everything he could for a successful outcome.
“He’s so sure of himself that I knew it would be the best possible outcome it could be,” says Sharese.
During the 11-hour surgery, Maxey and the care team corrected the issues and created a temporary patch over the hole in her heart, which would need to be removed in a few years because it can cause complications, including calluses and stenosis of the artery.
“Eryka’s congenital heart defect was repaired shortly after birth to restore blood flow to her body and close the hole between the two pumping chambers of the heart,” says Maxey. “But a common problem we see in children with this heart defect, and we eventually saw in Eryka, is the left-sided pumping chamber is small or ‘crowded.’ This crowding can progress over time and require removal of excess tissue to allow the heart to process blood properly.”
So, while the surgery was successful, Eryka would eventually need a second surgery to address the issue.
With that understanding, Sharese and her family decided to just celebrate the success of the surgery and focus on getting Eryka home, which came after a few weeks of recovery. She continued to see her doctors and therapists regularly and began to grow and thrive.
“We’re so grateful for the kindheartedness of everyone at Levine Children’s,” says Sharese. “She goes to the doctor and has the exact opposite reaction of most kids — she thinks doctors and nurses are her best friends.”
Eryka’s Second Surgery — and a Party
Three years later, on July 23, 2023, Eryka had a second surgery to address the excess tissue in her heart.
“This removal of crowed tissue was her second operation, which we call resection of the subaortic membrane,” says Maxey.
The second surgery was another success and while she was progressing very quickly, the recovery lasted a few weeks, including through August 6, Eryka’s 3rd birthday.
Disappointed she could not throw the party she had planned for Eryka, Sharese and the family decided they could still celebrate her 3rd birthday while she was in the hospital. But what they didn’t know is that Eryka’s nursing team already had plans to make the day extra special.
“All the nurses sang to her and brought her so many presents,” says Sharese. “I cried — it was so awesome. She totally had a party in the hospital.”
Eryka’s Prognosis and Follow-Up Care
“Eryka’s prognosis is excellent, though we will continue to monitor the area beneath the aortic valve for tissue growth,” says Maxey. “It would not be uncommon for Eryka to need one additional surgery to remove this stubborn scar tissue as she grows into a young adult.”
For now, the 3-year-old has cardiac checkups every six months and an electrocardiogram (EKG) annually.
“Eryka is an otherwise healthy young lady,” says Maxey. “Her energy and overwhelming cuteness leave me and others speechless.”
Big Hopes and Dreams for a Tiny Heart Warrior
Sharese has big hopes for her daughter’s future.
“I want her to be limitless,” she says. “I don’t want her cardiac diagnosis to hold her back. I want her to be full throttle like she always is. There is no ceiling. The sky is the limit.”
She offers this advice to other families of heart warriors: “Don’t be daunted by the diagnosis. Don’t let it paralyze you and stop you from advocating and fighting for your child to give them the best outcome and opportunity.”
Eryka’s family is grateful for her care at Levine Children’s.
“The amount of love we have is overwhelming,” says Sharese. “We can’t think of enough ways to show our appreciation. Without the surgeries, she wouldn’t have the energy to be this ball of fire. Levine Children’s gave her life.”
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