To her family, 13-year-old Destiny Le’Anna Locklear goes by “Sissy.” But as her medical journey unfolded and she spent many months at Atrium Health Levine Children’s Hospital, her whole care team has come to know her as Sissy, too.
She also goes by her newest nickname: Heart Warrior.
A Heartbreaking Diagnosis
In June 2022, Sissy’s mom, Anastasia “Anna” Cummings, noticed that Sissy wasn’t acting like herself. When she ran around outside or rode bikes with her friends, she became out of breath and wanted to lay on the couch. Sissy also began to experience severe stomach pains. Anna did her best to monitor symptoms at home, but when the abdominal pain got worse, Anna rushed Sissy to the nearest hospital.
“At that point, our local hospital wanted to transfer Sissy to a bigger hospital so they could find out what was causing her pain,” Anna says. “When she got there, they told us Sissy had heart failure.”
Sissy was diagnosed with dilated cardiomyopathy (DCM), a condition in which the heart muscle becomes weakened and enlarged. As a result, the heart cannot pump enough blood to the rest of the body. Sissy’s doctors said she was born with the genetic predisposition and it progressed over time, escalating quickly when her symptoms started to emerge.
“Heart conditions run in our family, but Sissy was a healthy baby and child, and didn’t have any signs that anything was wrong,” Anna says. “I just broke down crying when they told us she had heart failure. I started asking myself if I had done something wrong – if there was something I could have done sooner to help her.”
Painful Perseverance
Unfortunately, there is no known cure for the condition. In many cases, DCM can be managed with medication and lifestyle changes. But for those with advanced cardiomyopathy, like Sissy, chronic heart failure can become worse, causing the heart to deteriorate. In some cases, a heart transplant is needed.
Sissy spent several more months in the hospital before being transferred for the most advanced care at Atrium Health Levine Children’s Hospital, ranked among the top 10 Best Children's Hospitals for cardiology & heart surgery in the nation, according to U.S. News & World Report. Her care team placed Sissy on the heart transplant list in December 2022, but her condition continued to worsen.
Sissy worked with Dr. Gonzalo Wallis, pediatric cardiologist at Levine Children’s.
“When she came in, Sissy was incredibly sick and could barely walk,” Wallis says. “She was on the brink of needing a breathing tube.”
To help her heart function until a heart became available, Sissy was placed on a left ventricular assist device (LVAD). A mechanical pump attaches directly to the heart and helps pump blood from the lower chambers of the heart to the rest of the body.
As she was recovering from the LVAD surgery, Anna says the team told them that the right side of Sissy’s heart was in shock and they would be keeping an eye on it. But because she was so sick, Sissy was moved to the top of the heart transplant list.
Shocked, scared and overwhelmed, the news of her daughter’s heart condition was almost too much for Anna to bear. She was running on fumes, but she tried her best to be strong for Sissy.
“It felt like our whole world was falling in,” Anna says. “I was tired of seeing my baby hurt and suffering, and there was nothing I could do but be by her side and push her on every day.”
Less than a month later, the team gave Anna and Sissy the news they had been hanging on for – a heart was available.
“It was the best day of her life,” Anna says.
Sissy underwent major heart surgery to receive her new heart on February 2, 2023. It took a toll on her body, but with the support of her care team and her mother by her side, Sissy began her road to recovery.
On February 14, 2023, Sissy was able to go home.
“That was the best Valentine’s Day gift we could ask for,” Anna says.
Sissy is on medication and has regular check-ins with the transplant team to monitor her new heart. She also meets with pediatric nephrology and pulmonology teams at Levine Children’s to ensure all of her organs are working in concert.
Wallis says he was proud to see the whole care team work together to comfort Destiny and put Anna’s mind at ease.
“The pharmacy team is amazing and provided some visual aids to help make the administration of Destiny’s medication less overwhelming,” Wallis says. “And the whole team put Anna at ease about Destiny’s at-home care when they were discharged. It just illustrates that we’re all here for the kids and their families and we’ll do anything we can to help them feel better.”
Anna says she can’t thank Sissy’s care team enough for the expertise, support and love they showed to Sissy and her family during a traumatic time.
“You are all blessings,” Anna says.
Don’t Miss a Beat
For the decades of life this new heart gave to Sissy, Anna is fully aware that her gain means someone else’s loss.
“I thank the good Lord each day for the wonderful family who blessed Sissy with her new heart,” Anna says. “I am so sorry for their loss. But also grateful that they gave me back my baby.”
While the heart itself is crucial, the body in which it beats has to be strong, too. And Sissy continues to rise to the challenge.
“Let me tell you, my girl is a heart warrior,” Anna says. “She fought hard and went through so much. Now that she’s on the other side, I hope she can keep on living life to her fullest potential.”
Wallis couldn’t agree more.
“Destiny has a way of making everyone fall in love with her,” Wallis says. “I want her to grow up to live a full, happy life, just like every other kid. Nothing should stop Destiny and her spirit.”
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