This article originally appeared in the St. Louis Beacon - Jazz violinist Regina Carter had played to much larger audiences the previous evening, when she received standing ovations from capacity crowds at Jazz at the Bistro during both sets she and her group performed.
But on this early Thursday afternoon, Carter was devoting all her energy as a musician to pleasing an audience much smaller in number and stature.
Backed by her keyboard player, Xavier Davis, Carter was playing in the eighth floor playroom at St. Louis Children’s Hospital for a half dozen kids – some encumbered by hookups to oxygen tanks or IVs – as well as parents, nurses, doctors and staff.
Carter’s impromptu playlist was certainly different from her Bistro sets, but renditions of “When the Saints Go Marchin’ In” and “The Wheels On the Bus” had the kids at the hospital clapping along, banging percussion instruments and shaking tambourines as Carter played violin.
Last week’s performance at Children’s Hospital marked the third time Carter has performed there. As she told me during an interview after her hospital visit, she makes it a point to play for the kids every time she performs at Jazz at the Bistro.
“Wherever I play, I always make sure they know I like to offer workshops and go into underserved communities and work with students,” Carter said. “But even more than that, I like to go into hospitals.”
In fact, before her early afternoon visit to Children’s Hospital, Carter had conducted a workshop at McCluer South-Berkeley Middle School with string students. But it’s clear that playing for patients in hospitals – especially for children – is something that is close to Carter’s heart.
“When my mother was in the hospital making her transition,” Carter said, “I saw the very positive effect music had on her. Anyone benefits from hearing music, but especially children. But with kids, you don’t want to play AT them. I want to get them involved -- and try to brighten their day. Dr. Gutmann knows that every time I’m here, I want to come to the hospital and play.”
Carter was referring to Dr. David Gutmann, who is director of the Washington University Neurofibromatosis Center at Barnes-Jewish Hospital. Gutmann also happens to be a dedicated jazz fan – and a frequent attendee at Jazz St. Louis’ Jazz at the Bistro concert series.
Jazz and medicine
During Carter’s visit to the NF Center at Barnes-Jewish Hospital, Gutmann talked about his love of jazz, the parallels he sees between jazz and medical practice, and how he worked to make a connection between jazz musicians performing in St. Louis and the young patients at Children’s Hospital.
“I went to the University of Michigan,” Gutmann said. “And Ann Arbor was definitely the cultural hot spot in the state when I was there. I got to see so many amazing jazz artists, and my love for jazz really stuck. I was also a disc jockey during college and in high school before that. I didn’t have the talent to play the music, so that was my way to live it vicariously.”
As he moved through medical school and into the practice of medicine, Gutmann began to draw parallels between his profession and jazz – especially as he began to work more closely with medical researchers.
“What’s special about jazz is that it’s a lot like science and medicine,” he said. Both involve improvisation and collaboration. “Jazz is medicine personified. There is nothing cookbook about medicine; you have to work within a team and you have to be able to change plans quickly based on patient needs. And that correlates with the way a group of jazz musicians play together.”
Like Regina Carter, Gutmann is a strong proponent of music as a powerful therapeutic tool for patients in a hospital setting. And as he became more involved with Jazz St. Louis, he decided to see if he could get musicians who played at Jazz at the Bistro to also perform at Children’s Hospital.
“When I finally had enough bandwidth in my schedule, I was able to talk with Jazz St. Louis and ask them to bring jazz artists to Children’s Hospital each year. Regina was the first one to come, and last week was her third visit. She’s been so gracious about coming, and other musicians like Matt Wilson, Carla Cook and Sara Gazerek have visited as well over the last seven years.
“I remember the first time Regina came, one of the kids had just had brain surgery the day before – and Regina’s music put such a smile on her face. By the next time Regina came to Children’s, this girl was healed and everything was fine with her. But when she found out Regina was coming again, she wanted to come back and see Regina. I found a picture of the girl and Regina from the first visit, the child signed it to Regina. Regina still has it.”
Now Gutmann has taken the relationship between Jazz St. Louis and the patients he serves a step further. He and the staff of the Neurofibromatosis (NF) Center have started a pilot program for young children with NF that incorporates jazz music and is being developed through a cooperative effort with jazz St. Louis and the Music Therapy Department at Maryville University.
Neurofibromatosis
Before getting into the details of the program, called Beat NF, Gutmann provided background on neurofibromatosis, its effects – especially on children – and the work done at the NF Center.
“NF is a genetic condition that affects 1 in 2,500 individuals worldwide,” states Gutmann. “Kids with NF experience a wide variety of medical problems, ranging from developing tumors throughout the body, seizures, learning problems -- it really runs the gamut.
“There is no cure for NF, and no treatment at this point. So it’s very challenging to treat. About 10 years ago in 2004, we put together a small group of clinicians and researchers and created the Washington University NF Center here at Barnes-Jewish. We wanted to build a multi-disciplinary team, because NF is such a complex problem.”
Gutmann also explains that there are two different types: NF1 and NF2. The NF Center focuses on NF1 treatment and research.
“The challenge is whether we can we bring our talents together to change the way we practice,” he states. “We’ve still got a long way to go. But we have been awarded over 30 collaborative grants, and we’ve written over 70 manuscripts -- which we could never have done separately. And we’re continuing to work to find discoveries that can make their way into the workplace to improve treatment.”
In addition to the NF Center’s clinical program that treats both children and adults, and the center’s ongoing research arm, it provides services for its patients outside the traditional role of medicine. And that’s where the Beat NF program comes in.
“In addition to our clinical and research work, we need to take care of people as people,” Gutmann said. “We need to provide services to patients and their families that help them in terms of education, ways to build social networks – and also innovative therapies that don’t involve medicine.”
Club NF started three years ago as a way to provide free activities for children with NF1 – combined with educational interaction for families.
“It uses everyday activities as true therapy that parents can then take home,” Gutmann said. “We use fun activities like dance, rock climbing, skating and cooking in a purposed way to address everything from motor delay issues to problems in socialization. So I thought why not try a pilot program as part of Club NF that uses music therapy and that involves Jazz St. Louis?”
Philip Dunlap, Jazz St. Louis’ director of education, was enthusiastic about trying to develop the program, and Cynthia Briggs, director of the music therapy program at Maryville University, were both eager to participate.
“We really started meeting in early summer,” Gutmann said. “Cynthia brought in Brian Hilderbrand, a graduate student in Music Therapy, to work on the project. We put together a one-week pilot session in August, and it was successful. So we set up a four-part program in November.”
Alicia Vallorani, The NF Center’s clinical research coordinator, attended the pilot session and has been involved in the ongoing program as well. She added details about the effort in an interview at the center.
“Brian wrote four key songs for the project,” Vallorani said. “First, there’s the Hello Song – which helps the kids verbalize and socialize. Then there’s the Movement song – which works on developmental delays motor skills.
Writing the blues
“The kids and Brian also wrote a song together. They sat down and talked about likes and dislikes, and Brian put it into a song. He told them, ‘When you sing the blues, you say what you don’t like twice. And then what you do like once.’ So they all contributed to that. And then there’s the final goodbye song with more socializing and high fives.”
The kids in the program were able to play along with Hilderbrand on Orff instruments (tone bar instruments such as marimbas and xylophones that can be simplified for young children by removing unneeded bars).
The first three sessions of the pilot program included six children with NF1, ranging in age from 2-and-a-half to 5 years old and were held the first three weeks of November. After a break in which the parents of the children were given the music and asked to have the kids play it daily, a final session will take place on Dec. 13. The first session – as well as the final one – include a screening test.
“We wanted to try to measure whether this program will actually make a difference,” Vallorani said. “So the kids went through a battery of simple screening tests at the first session. And we’ll do the same test again at the final session.
Although the test results won’t be known until early January, Vallorani and Gutmann are both encouraged by the results to date.
“By the third session, the parents have been saying, ‘Please tell us it’s going to be a regular thing’,” Vallorani said. “And personally, one thing that stood out to me during the first three sessions is how rapidly the kid’s social skills grew. They were so very shy at first, and not able to even look at each other at all. By the third session, they all socialize so much more!”
“It’s been going so well, that I’m hoping we can find a way to continue the project,” Guttmann said. “We’d love as a long-range goal to have a “cycle of life” program that starts with toddlers, then graduates them into Club NF. And then we’re hoping to eventually launch a teen NF program to help them address the unique challenges they face as they take control of their lives.
“Then we could reinforce what’s going right for our families; we could also build the community of the kids in the program. As they graduate from Club NF, they could hopefully go back and serve as role models for the younger kids. But it all takes funding”
Find out more
The Washington University NF Center and Beat NF: www.nfcenter.wustl.edu. If you decide to help fund the Beat NF program, click on “Giving” and specify that your donation go to Beat NF.
Jazz St. Louis: www.jazzstl.org.
The Maryville University Music Therapy Program: www.maryville.edu/hp/music-therapy/
Regina Carter: www.reginacarter.com