Music therapy helps a young Georgia patient find her voice
“My name’s Grace/ I’m really brave/ Creative, strong/ And friendly too.”
Those lyrics were written by Myliyah “Grace” Leitzsey, a 7-year-old patient at Children’s Healthcare of Atlanta, who recorded the song with her music therapist while waiting for a heart transplant.
Her song, “Being Grace,” reflects the name she goes by and is helping the young patient cope with five months of hospitalization. The Macon kindergartener has been on the transplant list for 3½ years.
“I like the song,” Grace said recently from her hospital bed. “It made me feel strong.”
Grace was diagnosed with hypoplastic left heart syndrome during her mother’s pregnancy. HLHS is a rare congenital heart defect in which the left side of the heart doesn’t develop fully, forcing the right side to pump blood throughout the body.
About 1 in 4,000 babies in the United States are born with HLHS each year, according to the Atlanta-based Centers for Disease Control and Prevention.
When she was 4 days old, Grace had her first open heart surgery at Children’s, followed by another at 6 months old. She was relatively well for several years before being put on the heart transplant list.
“As she grew, her heart became overworked meeting the body’s oxygen needs, and the heart muscle weakened,” explained Charissa Deckelmann, one of Grace’s nurse practitioners. “It was not able to pump effectively, leading to what is known as heart failure.”
Last year, Grace’s oxygen levels dropped dangerously low, and her medical team decided she needed long-term, full-time hospital care. She’s been at the hospital since September receiving continuous intravenous medications to allow her to be listed at the highest level on the transplant list, Deckelmann said.
Meanwhile, music therapist Hannah Moran overheard Grace describing herself during an art session with artist-in-residence Hannah Randall. Moran asked Grace if she might like to create a song on the ukulele based on that session. The result was “Being Grace,” recorded and released at Seacrest Studios in Children’s Arthur M. Blank Hospital, where she is staying.
“Here at the hospital, things can be hard,” Moran introduces the young songwriter as the melody begins. “Tell us Grace, what can you do?”
“When I have a real tough day, I remind myself/ I can go outside and play,” Grace responds, repeating the refrain and then continuing with the chorus while strumming on a ukulele along with Moran.
“We have fun/ Go to gift shop/ Watch a movie/ Eat Takis.”
Grace said she wants to go home, a theme reflected in lyrics that express her desire to spend time outside the hospital.
“I like sun on my face,” she told The Atlanta Journal-Constitution. “If I can’t play on the playground, we bring chalk.”
Moran said she’s seen improvement in Grace’s attitude since she wrote and produced the song. “She’s always been a very social person, but since writing her song, she has grown in confidence. She is always asking if we can sing her song again.”
Music therapy helps patients, such as those Moran sees in the hospital’s cardiac intensive care and acute care units, manage their pain, cope with anxiety and stress, and experience positive bonding moments with friends and family while hospitalized, she said.
“Grace was really needing some extra opportunities to make the hospital feel like her home and to help (it) feel normal for her and also give her family an opportunity to do something that was not painful, not medical-related, truly about celebrating her and all of her achievements and how awesome of a kiddo she is,” Moran said.
Grace’s mom, Queenishua Moses, said her daughter never took formal singing or dance lessons because of concerns about her heart, but she enjoyed those activities on her own at home. When she first heard Grace’s song, Moses said she cried.
“I never heard her say what she’s going through on her own. She put out her emotions and how she was feeling, and it just made me feel good to know she had that outlook.”
Moran said her creative programs team discussed how to take the song a step further and decided to have an album release party in November at the hospital’s Seacrest Studios. Entertainer Ryan Seacrest sponsors similar broadcast media centers in pediatric hospitals throughout the country to help children and their families heal during their stay.
Moran said she and Grace are already working on a second song, based on one of Grace’s favorites, “We’re Going on a Bear Hunt.” Grace’s version will focus on her heart hunt.
The goal is for Grace, and other patients, to return to the lyrics for comfort. “If I can’t be there in the moment, she can sing the song and remind herself what she can do to cope.”
Roni Robbins has been a journalist for nearly four decades. This is her second stint as a freelance reporter for the AJC. She also freelances for Medscape, where she was an editor. Her writing has appeared in WebMD, HuffPost, Forbes, the New York Daily News, BioPharma Dive, MNN, Adweek, Healthline and others. She’s also the author of the award-winning novel, “Hands of Gold: One Man’s Quest to Find the Silver Lining in Misfortune.”
