For baby Joy, music and medicine are in perfect harmony

James Danna enters the Boston Children’s Hospital Cardiac Intensive Care Unit (CICU) with the tools he’ll use to treat Joy, a 9-month-old patient recovering from open-heart surgery. Instead of a stethoscope or scalpel, James carries only small percussion instruments and a guitar.

He gently opens the door to Joy’s room, taking a quick read of her heart rate—138. Joy is a tiny little thing in a great big bed, under bright lights and tethered to multiple machines. Over the course of her multiple procedures for a congenital heart defect, the noise of the monitors, air conditioning and loudspeakers have made for a very wary baby. Her medical chart describes Joy as “staff phobic,” as most adults who enter her room poke and prick her.

But Joy has met James many times before and knows him to be safe. She locks her eyes on him and waits for the music to begin. Keeping his distance, James quietly hums a tune while strumming a few chords on his guitar. “The music I play for Joy is soft like silk, a sensory blanket to swaddle and soothe her.”

Joy smiles, crosses her little legs and nods to the beat.

What is music therapy?

James is a music therapist at Boston Children’s Hospital, using his unique brand of therapy to treat patients with all types of conditions, from a broken bone to epilepsy. In this setting, music has a greater purpose than to entertain; it is used to achieve non-music goals, ranging from bringing family members together, improving speech and mobility, or in Joy’s case, lowering her heart rate and regulating her breathing.

Music therapy has been around since the early 1900s, and research continues to show it works. Results of a 2013 study of premature infants published by the American Academy of Pediatrics found live music provided by a certified music therapist had a positive health effect on preemies: “The informed, intentional therapeutic use of live sound and parent-preferred lullabies applied by a certified music therapist can influence cardiac and respiratory function.”

Music therapy at Boston Children’s

Music therapy at Boston Children’s has grown from a single consultant in 2001 to a robust program with four board-certified music therapists on staff. Dana, Joanna, Brian and James spend 114 hours a week with patients in a variety of inpatient, outpatient and satellite areas. Each therapist has a unique style, but they all do the work because they have seen for themselves how music aids in patients’ recovery.

Dana Osterling, who works primarily with Neurology and Oncology patients, recently wrote and recorded music with an older child using GarageBand on an iPad. “For people in a compromised situation, something so human like music gives a connection that is really hard to find another way. I do this work because it is the ultimate opportunity to lift people up, and in that way it lifts you up.”

Joanna Bereaud finds that writing songbooks for parents of babies in the NICU can be very beneficial. “Parents are very stressed out and going through really tough times. We pick songs that are meaningful to the family and put the baby’s name into the songs so it’s personal. Instead of just sitting there crying at the crib, we can sing.”

Brian Jantz had been a musician his whole life, but at some point wondered if there was more he could be doing with his talent. “Once I found out about music therapy, it clicked right away, and I haven’t looked back since then. There are days that are emotionally difficult, but ultimately we’re all very excited to be here and very passionate about this. It’s incredibly rewarding.” Brian and Joanna have been at Boston Children’s for 15 and 13 years respectively, providing mentorship to James and Dana. “They have built up the program by showing people the benefits of music therapy and showing families of kids what music has the potential to do,” says James.

Music therapy benefits the whole family

Back in the CICU, Joy continues to listen to the music with a smile on her face. Her mother Debra is also smiling, remembering how she first met James after Joy’s first surgery. “He had come to visit our roommate and overheard Joy in distress. He just jumped right in and played for her. She was obviously well cared for medically speaking, but the music helped her with the emotional anxiety piece. Her heart rate lowered, and all of a sudden she fell asleep in my arms. What a gift that was to all of us.”

Indeed, music therapy can be as therapeutic for the family as it is for the patient. “Over 65 percent of the sessions involve a family member,” says Miranda Guardiani, program manager of Boston Children’s Creative Arts Program. In this case, James’ music allows Debra to momentarily take her mind off Joy’s medical needs. It connects her to her husband Tom—who also plays guitar—while he holds down the fort in Minnesota. And it soothes her sorrow from having lost her first child Ian to a brain tumor.

After Ian’s passing in 2009, Debra and Tom dedicated themselves to volunteering and hosting fundraising concerts for children’s charities. Looking back, Debra says, “Music has been a big part of Joy’s journey even before she arrived in our home.” After five years, the couple decided to adopt, specifically requesting a healthy baby. Months later their seemingly healthy baby girl was born.

During a routine blood test soon after Joy’s birth, it was discovered that she had hypothyroidism, which led her Minneapolis-area pediatrician Dr. Christian Morkeberg to request an echocardiogram, revealing a congenital heart defect of the mitral valve. Physicians in Minnesota referred Joy and her family to the one surgeon in the world they felt could help—Dr. Sitaram Emani at Boston Children’s.

In Joy’s heart there rings a Melody (valve)

Within a few weeks, Tom, Debra and Joy were in Boston meeting with Dr. Emani. “Tom and I are so thankful that Dr. Morkeberg recognized early on that Joy needed those tests. It’s a very different feeling sitting across from the doctor who says, ‘I’m sorry there’s nothing we can do’—as was the case with Ian— versus the doctor who says, ‘I’m sorry she’s going to have a rough road; but there is another side here.’ ”

At six weeks, Dr. Emani repaired Joy’s mitral valve, which gave her time to grow and get stronger. When the valve began to fail a few months later, Dr. Emani replaced it with a modified Melody valve made from a bovine jugular vein—a solution that Dr. Emani and his team developed at Boston Children’s in 2012. The Melody valve was aptly named after Dr. Philipp Bonhoeffer, a classically trained violinist.

James says goodbye to Joy

Joy keeps her eyes on James and her legs crossed. She coos. As he plays, James looks up at the monitor again and notes that Joy’s heart rate is down from 138 to 124. Debra is not surprised. “Joy always calms immediately to James’ gentle voice and the gentle strumming of his guitar.”

Tom and Joy 1This is the last music therapy session for Joy. She and Debra will fly home in a few days, which is music to James’ ears. He has been an important part of Joy’s care team, and his job is done.

Physicians in Minnesota will keep a close watch on Joy and communicate regularly with Dr. Emani and team at Boston Children’s. Joy’s new Melody valve can be expanded as she grows, and she may eventually need another valve replacement to take her into adulthood. Until then, Debra, Tom and Joy plan to fully enjoy their family time together. Tom says, “I’m not putting her down for at least a week!”

 

Find out more about Music Therapy at Boston Children’s Hospital