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Heart Transplant: Maya’s Story

Posted on Feb 20, 2023

A photo of Maya with pediatric interventional cardiologist James Thompson, M.D., at Johns Hopkins All Children's Hospital
Maya with pediatric interventional cardiologist James Thompson, M.D.

Maya is forever connected to the number seven. At just 7 months old — she had her first heart transplant. A few years later, she spent seven months in the cardiovascular intensive care unit (CVICU) at Johns Hopkins All Children’s Hospital in St. Petersburg, Florida. When she was 7 years old, she had a second heart transplant.

Seven might be her lucky number now, but life didn’t necessarily start out lucky or easy for Maya. She was born with opiates in her system and never received prenatal or postnatal care. Shortly after Maya was born though, a local pastor named Brent, and his wife, Valerie, became her medical foster parents. They took on the role right after Maya’s first heart transplant as a baby knowing there may be more medical obstacles ahead.

“She was born relatively healthy, and she is so strong. She's a fighter,” Brent says. 

Now 8 years old, Maya is the youngest of six siblings. Brent and Valerie were able to officially adopt Maya when she was 3 years old, one of their greatest blessings.

“There’s not a difference in adoption,” Brent says. “Your kids are your kids. They’re still gifts from the Lord. Your kids are your crown.”

Maya showed her strength as she grew, but unfortunately, she came down with pneumocystis pneumonia in 2021. The condition is considered a lung fungus that often affects immunocompromised children who have had a transplant or cancer. The condition took a toll on her health while she was hospitalized for 34 days, fighting for her life.

“During that time is when she almost died,” Brent says. “Her kidneys, lungs and other organs were affected.”

While she made it through the illness, she was lethargic and unlike herself and spent more than 200 days in the hospital where her health care providers within the Heart Institute determined she would need another heart transplant.

A photo of Maya painting with child life specialist Carli Fischer at Johns Hopkins All Children's Hospital
Maya with child life specialist Carli Fischer

As the family anxiously waited, they were surrounded by their new family in the hospital’s CVICU, including Child Life specialist, Carli Fischer. Her focus is to create a sense of normalcy for hospitalized children. Child Life specialists support patients’ mental and emotional well-being, while also helping them to understand their diagnosis and procedures at an age-appropriate level, often through medical play. 

“Carli is my number one. She’s like a patient advocate,” says Brent. “You’ve got to find a new normal and if you don’t have someone like Carli, it’s difficult. She goes above and beyond.” 

Fischer used medical play to support Maya in processing and expressing her emotions regarding extended hospitalizations. She also helped Maya through therapeutic activities including, giving her an outlet for emotions of frustration and anger by drawing things on paper that make her mad, then putting that paper on bubble wrap and stomping it.

“Carli always goes to bat to do things for us,” Brent says. “It’s not just the medicine — the mental toll is the hardest thing. Carli gives you the motivation to charge forward.”

After several long months, Maya finally received her new heart. James Quintessenza, M.D., co-director of the Heart Institute and chief of cardiovascular surgery at Johns Hopkins All Children’s Hospital, led her transplant surgery. Shortly after surgery, Maya was up and moving, and it was clear she hadn’t lost her big smile and spirited personality.

“We are very happy for Maya and her family as she continues to do so well,” Quintessenza says. “It’s so fulfilling for our team of dedicated providers, who have cared for her since infancy, to be part of her journey.”

CVICU staff who stood by her side and cared for her even lined the halls on her last day in the unit for an emotional celebration. There were tears, cheers and lots of smiles when she went home — 222 days in the hospital was the official count.

For now, Maya only comes to the hospital for regular checkups with transplant cardiologist Alfred Asante-Korang, M.D., who has managed the care of heart transplant, cardiomyopathy and heart failure patients for 20-plus years.

“Maya is an incredibly brave young girl who, in spite of having undergone two grueling heart transplants, always demonstrates a captivating and infectious personality,” says Asante-Korang (also known as Dr. A-K).

This April, will mark one year since Maya’s heart transplant.

“She is like night and day. This is a different kid. She’s eating everything in sight. She is up at 7:30 every morning and going 100 miles an hour, and the doctor said her heart is beating like crazy,” says her dad, who couldn’t be prouder.
 


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