Heartbeat songs offer young transplant patients a special gift
Stethoscope in hand, Meredith Schlabig listened intently to the steady rhythm of 8-year-old Matthew Myers’ second heart.
Schlabig, a music therapist, was recording the young heart transplant patient’s heartbeat. But not for any medical reasons — for a song.
“Heartbeat songs,” music that incorporates patients’ heartbeats, have become increasingly popular at C.S. Mott Children’s Hospital. Music therapists work with heart transplant families to create customized songs with both the heartbeat from a patient’s original and transplanted hearts.
“We hope these recordings elevate hope, provide comfort and give patients a positive and creative outlet to express themselves,” said Schlabig. “It offers them a special gift unique to them.
“Your heart keeps you going,” she said. “I can’t think of anything more personal than your heartbeat.”
The patient’s unique beat
Using a Bluetooth-enabled stethoscope, therapists record patients’ heartbeats on an iPad. Patients or their families choose a song to record over the beat. For babies, parents may choose a favorite lullaby. Teens may choose an empowering pop song. Families also have the option of composing original music.
Then, using a guitar or another instrument, therapists record and edit the song of choice, matching it to the tempo of the heartbeat. The patient’s unique beat becomes the base of the song.
Music therapists plan to expand these types of recordings in Sophie’s Place, an in-hospital music studio that Mott hopes to open in the next year.
“It just blew our minds,” Matthew’s mother, Ashley Myers, said of hearing Matthew’s heartbeat song. “We didn’t know anything like that was even possible. It’s something really special that we can keep from this experience and memories from our time here.
“There are so many parts of this process that are still difficult for him to understand,” Myers added of Matthew’s transplant. “I think hearing his old and new heartbeat in music and being a part of creating it helped make him more comfortable with everything. It helped get him through it.”
Contracted as a baby
Myers says Matthew had generally seemed healthy most of his life. But at a routine wellness visit in North Carolina, where the family used to live, his doctor detected a murmur in his then-6-year-old heart. Further testing led to a diagnosis of dilated cardiomyopathy, a condition in which the heart’s muscle cells are abnormal or damaged, limiting the organ’s ability to pump blood.
“That’s when our whole world just kind of tumbled,” Myers said.
Doctors speculate that a virus Matthew contracted as a baby shortly after his birth in Germany unknowingly reached his heart, leading to progressive scarring and enlargement. By the time it was discovered, the damage was so extensive that a heart transplant was the only option.
After much research, Ashley and husband Nick opted to come to Michigan — where they were originally from — to seek care with the Mott congenital heart team.
Matthew was put on the heart transplant list in July 2018 and was cared for by pediatric cardiologists Kurt Schumacher, M.D., and David Peng, M.D.
Increasing signs of heart weakness
But within a few months, Matthew showed increasing signs of heart weakness and heart failure symptoms.
In September, pediatric heart surgeon Ming-Sing Si, M.D., implanted a mechanical heart pump known as a ventricular assist device to act as a bridge to transplant.
If not for that decision, “we would have lost Matty,” Myers said.
The VAD helped pump blood from the lower chambers of Matthew’s heart to the rest of his body using a backpack with a controller and batteries.
With a rough recovery and increasingly long hospital stay, music became an important part of the second-grader’s coping, his mom said. Famous for break dancing to loud music at home, he requested to hear Queen’s “We Will Rock You” ahead of any procedures.
“Music therapy helped him connect to his home life … a much-needed distraction. You could just see him light up when Meredith came around,” Myers said.
A holiday recital
After the young patient showed an interest in piano, Schlabig incorporated the instrument during music therapy sessions. His first heartbeat song included his own piano rendition of the Harry Potter theme song over the beat. He performed it during a holiday recital in the hospital’s lobby.
“Matthew was just really energetic and excited about trying different instruments. His love and joy for music is just out of the world,” Schlabig said. “He’s a very special, charismatic young man who just inspires and brightens everybody’s day.”
Matthew created his own song using 10 different available beats in the music creation app GarageBand and asked his second heartbeat to be incorporated into that song. He directed timing of when he wanted the music to start and fade in and out.
“We try to involve patients in the process and provide as much autonomy as possible,” Schlabig said.
“These songs are often reflective of their hospitalization, their mood and how they feel waiting for a heart transplant and again post-transplant,” she added. “It gives me an opportunity to reach patients using music in a new way to relate to their journey here.”
Schlabig noted that heartbeat songs can also be created as legacy pieces for families grieving the loss of a child. Special recordings of a child’s heartbeat can be played through teddy bears given to families.
Relieved to be home
Matthew waited six months for a heart. On Dec. 26 of this past year, he got one.
“That was a pretty awesome Christmas present,” Myers said.
After a successful 10-hour transplant surgery led by Si and a two-week hospital stay, Matthew was able to go home in January. He’s reunited with 6-year-old sister Sammy in Alpena, Michigan. His dad, Nick, serves in the U.S. Army and is currently stationed in Virginia.
After months of depending on a heart pump and living in fear, the family is relieved to be home.
“Matthew wants to go to school, do karate and just do all the normal kid stuff he wasn’t able to do for almost two years because of all of the limitations,” Myers said.
“He just wants to get back to being a kid again, and I want us to get back to being a family. It will be nice to be together and not have the constant worry that something will go wrong before he gets a heart.”
While being away from home for so long was difficult, the people at the hospital became another family, Myers said.
“We felt really comforted by everybody at the hospital. There was so much support,” she said, adding “music will always be one of the special and positive parts of his time here.”