A Change of Heart: Trevor’s Story

Music has always been a big part of Trevor Sullivan’s life. He loves collecting records, playing the guitar, and going to concerts. His favorite artists are, in his words, a “rotating cast” but currently he enjoys music by Green Day, Movements, and Idols. I sat down with Trevor to talk about his medical journey and his experience with music therapy.

When asked about his health journey, he said: “I had a pretty normal life until I was about 14 and I started getting sick a lot. I had a lot of upper respiratory infections and one of those times my pediatrician told me to go to the hospital and get a chest x-ray.” He went to Beaumont, his local hospital, and had an x-ray done. The x-ray revealed that his heart was nearly two times too big. He went on to say: “my heart was severely enlarged and so I was air-lifted to the U of M hospital on the survival flight and they did some testing. I was diagnosed with ebstein’s anomaly. It’s a birth defect that has to do with your tricuspid valve not closing all the way. Since it wasn’t discovered at birth for me it just got worse and worse and worse until my heart basically gave out and so they decided to list me for a heart transplant.” Trevor was in and out of the hospital for months with 3 months being his longest admission until on November 13th, 2015. On that day Trevor received his new heart. As a side effect of the medication he needed to take he now has diabetes but other than that he has been in good health since the transplant.

While Trevor was in the hospital, he was treated with music therapy and told me it was “one of the most important things to happen to me in the hospital.” He told me how he learned everything he knows about the guitar from his music therapist and how it is now a key part of his life. He spoke about how it is hard to have so much time available in the hospital with so little to do and how music therapy gave him a fun and positive way to cope with that. Music therapy became a significant part of Trevor’s healing process. In his own words, “All the doctors and nurses are, of course, incredibly important but it’s those other things that hospitals have started offering like child life and music therapy that I think are really just as important…It’s just as important as any other medicine.”

The music therapists at Trevor’s hospital have a heartbeat program that is so meaningful to him and his family. His music therapist recorded the beat of Trevor’s original heart and then recorded music over it, using his heartbeat as the beat of the song. Trevor and his family can listen to it anytime now and he can always have a special keepsake from the heart that carried him through the first 14 years of his life. His music therapist used some of Trevor’s favorite music and also did a recording with his new heart. The heartbeat program was being pioneered at the time and Trevor was their first patient to have his heartbeat recorded. Since then, over 200 patients have been able to receive this extraordinary gift, just in 2022! Trevor told me, aside from the heartbeat recording, his favorite memory of music therapy in the hospital was a time when he had to get an operation done and his music therapist and a child life specialist were in the room playing guitar with him and listening to music. He shared that this improved his experience during the procedure greatly.

When Trevor had his long hospital stay all of his music therapy appointments were at bedside in his hospital room. In 2022, however, a dedicated music therapy space called Sophie’s Place opened in his hospital, allowing patients who can leave their rooms to have a break from the monotony of a hospital room and experience a positive change of environment. The space has many types of musical instruments and even a recording studio for patients to use! Speaking of this great opportunity Trevor spoke about how often great music comes from difficult and dark places and, having these kinds of resources he thinks many talented musicians will come out of the hospitals that have a Sophie’s Place. He talked about how the resources available in Sophie’s Places will give patients an opportunity to experiment with music in a way they never have been able to do before and that is something that will make their hospital stay much more bearable.

Music therapy made all the difference in Trevor’s hospital stay and because of it he can look back and remember some good memories along with the hard times he experienced. In closing, Trevor continued to speak of how Sophie’s Place and music therapy creates an opportunity to nurture a new generation of great musicians as well as gives those patients the skills they need to cope with the hard times ahead. He told me “I love advocating for music therapy” because of the great difference it has made in his own life.