Trevor Sullivan led a normal childhood, playing football in middle school and trumpet and tuba in the school band. But Trevor, born and raised in Southfield, became very ill at the age of 14.
His parents took him to Beaumont of Royal Oak for testing. A chest X-ray revealed a life-threatening congenital birth defect. He was airlifted from Beaumont to the Congenital Heart Center at Michigan Medicine C.S. Mott Children’s Hospital in Ann Arbor. Doctors diagnosed Trevor with an Ebstein anomaly, a rare defect in a heart valve, and determined he would need a heart transplant.
The season of waiting began with additional testing and preparations for the transplant.
As Trevor cycled in and out of hospital, awaiting his transplant, his family was assisted by Child Life Services, specialists assigned to patients and their families to help them navigate the challenges of hospitalization, illness and disability. Trevor’s specialist referred Trevor for music therapy.
It was a life-changing moment for Trevor when Meredith, a board-certified music therapist, walked into his room with her guitar. (Meredith’s last name is confidential in keeping with C.S. Mott’s HIPAA rules for its employees.)
“We kinda just clicked, and she started teaching me the guitar, and I started teaching her about the music I love,” Trevor says. Trevor says the world of rock ‘n’ roll seemed to be new to Meredith, and she just “vibed” with their conversations. He took special pride in feeling that he was sharing his passion for rock history.
As their music therapy sessions progressed, Trevor and Meredith began to perform together at a weekly music night in the hospital’s Skyline Cafe. A night filled with pizza, snacks, music and respite, the cafe provided an atmosphere of bonding and relaxation, where patients, families and staff could enjoy the fun and healing distractions of music.
For Trevor, it was pure joy.
Trevor spent nine months in and out of the hospital waiting for his new heart and honing his guitar skills. While Trevor awaited his transplant, Meredith recorded his heartbeat as part of the “heartbeat songs” recording program. The program seeks to memorialize the patient’s heartbeat, as it exists in a moment of time.
Recording heartbeat songs has become a significant program for patients and families in transition with heart transplants or loss of life.
Trevor recalls Meredith bringing in a stethoscope and microphone to capture and record his heartbeat on an iPad with Garage Band software. Using Trevor’s heartbeat as the rhythm track for the song, Meredith recorded one of his favorite songs, “Sleep,” by the band My Chemical Romance, on piano and electric guitar. The song was lyrically a fitting and therapeutic reflection of his current state of mind. Later, after his heart transplant, they would record Trevor’s new heartbeat with a different song.
Late one night in November 2016, after a night performing at the Skyline Cafe, Trevor got the news that a heart had been found for him. Within days, he got his transplant. He had a new heart.
To commemorate his new heartbeat in song, Trevor suggested “House of Gold” by Twenty-One Pilots. Trevor’s new heart was the backbeat to Meredith’s ukulele as the upbeat song reflected Trevor’s restored mind and body.
Meredith gave Trevor the heartbeat recordings on a CD, a keepsake for the family to treasure.
When Trevor saw social media posts and photos from the Dick Wagner “Remember the Child” Fund, he saw rock stars coming together to help bring music to hospitalized children. A passionate fan of alt-rock, metal, hardcore, and emo, Trevor was captivated by the nonprofit’s mission and website. It’s filled with videos of legendary musicians rocking for kids, as well as with inspiring videos of children in hospitals, playing musical instruments donated by the charity.
Trevor reached out to me on social media, to connect with the organization and share his story. From personal experience, Trevor knew the power of music. He related how uncomfortable it was to get a new PICC line in the surgical unit, and the relief he felt when Meredith came into the room to play the guitar. It helped to dissipate his pain and nervousness.
Five years after his heart transplant, Trevor remains healthy and passionate about music. He plays guitar, collects vinyl rock records and loves to attend concerts and discover new music. Now an advocate and youth ambassador for the Dick Wagner Remember the Child Fund, Trevor is excited to “shout to the mountain tops that music therapy is just as important as all the doctors, tests and procedures.”
“Short of the doctors saving my son’s life and fixing the heart problem, music is what got Trevor through it,” says Trevor’s mom, Kimberly Sullivan. “Music helped Trevor to express his medical journey, and it also helped the family in immeasurable ways.”
Trevor and his family are grateful to the Child and Family Life Department at C.S. Mott and for music therapy. They send a giant “high five” to Meredith, for her creativity and inspiration in music therapy, and for teaching Trevor’s family the art of turning trauma into victory through the healing powers of music.
Victoria Woody is director of development for the Dick Wagner Remember the Child Fund. Visit facebook.com/dickwagnerrememberthechild.
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