A few weeks after they lost Mary Jo, her parents received a package in the mail from Atrium Health Levine Children’s Hospital. Inside the box were mementos of her time there: a framed photo of her signed by members of the medical team, a cartoon that depicted her as a superhero, a stuffed bunny, a candle with a handwritten inscription: “In Loving Memory of Mary Jo Mattis.”
Among the gifts were three plastic objects, each roughly the size of a small coin purse. They were red and heart-shaped—a Valentine’s Day heart, not the organ. When Angie and Dan Mattis pressed buttons on the hearts, they played a recording of Mary Jo’s heartbeat. Her music therapist recorded it April 19, 2022, a few hours before she died.
It’s a little more than a year later, a drizzly Sunday morning at the Mattises’ home in Lake Wylie. Their son, Everett, 7, and 3-year-old Morgan, Mary Jo’s twin sister, play next to their parents on the couch and watch cartoons on their tablets. Angie and Dan are reserved Midwesterners; they’re a few weeks from moving back to their hometown of Cincinnati for a new job Dan’s accepted at the insurance company he works for. But the memories come back strong that morning, and neither can hold them in.
Morgan snuggles against Angie’s right side.
“I know, baby.”
More emphatically: “It’s OK, Mom!”
“I know,” Angie says, stifling a sob. “We’re talking about Sissy.”
Morgan and Mary Jo were born two months premature on January 22, 2020. Morgan is fine. Mary Jo had profound defects that doctors discovered months before she was born.
The medical term is “heterotaxy.” In Mary Jo’s case, it meant she was born with a misaligned digestive system, her liver on the wrong side of her body, no spleen—which rendered her especially susceptible to bacterial infection—and a heart with a defective left ventricle. In a healthy heart, that chamber and the left atrium make up half of the mechanism that circulates blood throughout the body. Our bodies draw oxygen from blood, which travels back to the lungs to be replenished with fresh oxygen. Pulmonary veins carry the enriched blood to the left atrium. The blood then courses through a valve down to the left ventricle, which pumps it to the rest of the body.
Mary Jo’s left ventricle was woefully underdeveloped and did not function, and nothing separated what should have been her two atria. In effect, she had half a heart.
She made it for more than two years. She fought, and the doctors did everything they could. The time came when they could do nothing more. Until then, Mary Jo spent some of her happiest moments with her music therapist, who played songs on a ukulele and gave her blocks to knock together. It was the music therapist who recorded Mary Jo’s heartbeat on her final day. She’s a professional who believes—as do a growing number of therapists and doctors—that her specialty is integral, not incidental, to medical care.
Danae Merrick grew up in a family of musicians. She began playing piano at age 4, and by the time she graduated from high school, she was an accomplished flutist who thought her future lay in music performance. But she disliked the “cutthroat” atmosphere of performance communities. “It’s very difficult to be successful and to also have friends as a music performer, in my humble opinion,” she says, “and it just was not the profession for me.”
After her first year at Columbia College in South Carolina, Merrick switched to studying childhood development, but she didn’t care much for that, either. “It took a break from college for me to figure out: ‘What if I paired the two?’” She had heard about music therapy, and she thought it might marry her love of music and her desire to help people—and without the clashing egos. It struck her as a higher calling. She enrolled at Charleston Southern University in 2006 and graduated with a bachelor’s degree in music therapy four years later.
“When I found out that this was an actual profession, I decided, ‘That’s for me,’” Merrick, 42, says at Levine Children’s, which hired her as only its second full-time music therapist in 2014. “I fell in love within five minutes.”
She began in an environment where the dominant figures, doctors and surgeons, typically thought of music therapy as a trifle—nice, with perhaps some benefit to patients, but nothing essential. In the past decade, though, medical literature has begun to examine music’s ability to lift patients’ spirits and manage stress, which exacerbates all kinds of serious medical issues, including cardiovascular disease and cancer.
The sense of community that music can create prompts “the release of the neurotransmitters endorphin and oxytocin, which both play an important role in the defensive response to stress,” according to a 2020 paper in the London-based, peer-reviewed journal Health Psychology Review. Music therapy, in which trained and licensed professionals tailor treatment to specific patients’ needs, can be even more effective in reducing stress, the paper’s authors say. Merrick essentially made that case to administrators at Levine—which now has a team of four music therapists, three with full-time positions.
“We don’t just go into a room and start playing music,” she says. “We find out what’s going on with the patient, what their age is, what their developmental level is—which is especially crucial in a children’s hospital because there’s a broad range, infants all the way to young adulthood. Our top two areas of need are pain and anxiety management. That’s how we have built our program from the ground up. When we get here first thing in the morning, we look to see what the pain and anxiety needs are, and we filter from there.”
Another member of the Levine Children’s team, Rachel Barber, first encountered patient Rachel Reed in March, when she was well into a 103-day stay, her longest of multiple hospitalizations. Rachel Reed, who turns 18 this month, was there to sort out complicated gastrointestinal issues that require a pump and tube to continually feed formula directly into her small intestine. She can’t eat or drink.
Rachel Reed seemed generally healthy until October 2020, when she developed a headache that wouldn’t go away. Doctors eventually diagnosed her with Ehlers Danlos syndrome, a genetic connective-tissue disorder that, according to the National Institutes of Health, “affects virtually every organ system, which can result in significant morbidity and mortality.” She also suffers from nervous and digestive system disorders. I visit her home in Gaston County on Monday, May 1. Levine discharged her Thursday, April 27, four days ago. “I was a healthy kid,” she says, “until, all of a sudden, I wasn’t.”
By the time Rachel Barber walked into Rachel Reed’s room on the 10th floor, the teenager was, in the words of her mother, Jennifer, “tapping out.” The physical problems seemed endless, and she says doctors sometimes dismissed her complaints as the products of anxiety or youth. “At this point, I had stopped talking,” Rachel Reed says. She sits beside her mother at their dining room table. “Rachel came in, and I had no idea who she was. I didn’t know anyone recommended me for music therapy. She just came in, and we started talking. And she was so friendly. We just talked about the most random things. It was almost like a reliever—that someone there could have a normal conversation with me.”
The therapist introduced her to the ukulele—Levine has a collection, courtesy of the international charity Ukulele Kids Club—and taught her a C chord, then a few more. They’d go outside on nice days and talk, and Rachel Reed would play her ukulele. After difficult meetings or procedures, she would calm herself down by strumming her ukulele.
She began to feel lighter, more confident. Her ukulele was the only thing she could control, and the instrument allowed her to focus on something she could do in an environment that reminded her constantly what she couldn’t. She began to express herself again. She’d tell doctors: You may have a medical degree, but I have a Ph.D. in my own body. “I found my voice,” she says. Music therapists refer to that sense of autonomy as one of the practice’s most powerful benefits.
Rachel Reed’s musical tastes lean toward folky indie-pop; singer-songwriter Gracie Abrams is one of her favorites, especially her song “Mess It Up.” With Rachel Barber’s help, Rachel Reed learned to play it, and she performed the song in the hospital’s in-house broadcast center, Seacrest Studios, with cameras rolling. “It was very, very nerve-wracking,” she tells me, but “oh, it was so much fun.” She got to keep her ukulele, and she promised Rachel Barber she’d keep practicing.
I ask Rachel Reed if she’s spoken to her namesake since her discharge. She hasn’t. I plan to contact Rachel Barber anyway, so I call and put her on speaker.
“Hi!” Rachel Barber says. “How was Taylor Swift?”
Two days after her discharge, Rachel Reed and her family traveled to Atlanta for the concert. She took a sign: “Spent Over 100 Days In the Hospital But I Fought My Way Out to See Taylor Just In Time!” Gracie Abrams was one of the opening acts.
“Oh, my God,” Rachel Reed tells Rachel Barber, “it was amazing!”
“Good. I’m so glad. Was it everything you hoped it would be?”
“I cried,” Rachel Reed says, “when Gracie came on the stage.”
The third full-time music therapist at Levine was Anneliese LoVullo, hired after her internship in 2019 to work with cancer patients, a position she still holds. Rachel Barber was the fourth, hired in July 2022. Not long after, Barber began to act on an idea she’d developed during her own internship at another hospital: music therapy for children’s hospital staff.
Working at Levine or any other children’s hospital can be emotionally and physically taxing, and Barber says she’s encountered administrators and nurses who have expressed some version of: Man, I could use some music therapy, too. She started with three units early this year, and she hopes the program grows.
It’s a benefit to staff—and an acknowledgement that there’s more to this music therapy business than medical professionals thought a decade ago. “I make sure to emphasize that it’s using music in a clinical, purposeful, intentional way to help these patients work towards their medical needs and goals of care,” Danae Merrick says. “It’s taking the approach that you would expect any clinician coming into the room would take.”
One difference with music therapy is that the clinicians at times treat the patient’s family members when they no longer can treat the patient. The plastic hearts that the hospital sent to Angie and Dan Mattis have their own flaw: You can accidentally erase the recording of the heartbeat. The Mattises have two young children, so that happened. Merrick responded with an email with two sound files, one of the heartbeat alone, another with Mary Jo saying “Hi!” overdubbed at the beginning. “I hope,” Merrick wrote, “these recordings bring you some comfort during this difficult time.”
They do. But it’s been only a little more than a year, and it’ll take time for the comfort to outweigh the pain.
“I listened to it right away, briefly,” Angie says. “To listen to the whole thing? It took me probably two or three months, because I would listen to it, and I would just start crying. … It’s good to know that I have it, because I know, as time progresses, I’ll be comforted by it. But it hurts, still.”
As we’ve talked, Dan has remained mostly silent and occasionally brushed away tears; he’s shy, Angie’s explained. I ask him if he’s been able to listen to the heartbeat recording, and his response comes out in a gasp: “No.” Angie gets up from the couch to fetch a box of tissues.
Then Dan corrects himself. “Well, I can listen to it.”
But “it hurts,” I suggest. He nods.
“In a good way. I mean, I want to remember her. I think, over time, it’ll get better. It’s something we’ll always have. It doesn’t get more real than a heartbeat.”
He’s silent again for a while, then adds in a near-whisper: “But I’m surely grateful that we have it.”
GREG LACOUR is the editor.