The Power of Music Therapy: Darlyn’s Story

On a sunny day in the middle of spring, Darlyn was born at St. Joseph Hospital in Orange. She was immediately transferred across the street to the level IV neonatal intensive care unit at CHOC Children’s. As the spring turned to summer, and summer gave way to fall, the NICU remained Darlyn’s home as she battled with a myriad of health challenges.

Before she was born, prenatal ultrasounds showed that Darlyn had a congenital diaphragmatic hernia (CDH), a rare birth defect where a hole in her diaphragm allowed organs from the abdomen to move into the chest. After birth, she was diagnosed with bilateral CDH. Approximately one in every 2,500 babies born are diagnosed with CDH. Of those, only one percent have a bilateral CDH. Darlyn’s parents Mirian and Edgar understood the seriousness of this diagnosis and weren’t sure if their baby would survive the pregnancy, or pass away shortly after birth. In her first week of life, Darlyn underwent her first in a series of surgeries.

“For the first two or three weeks of her life, our main goal was survivorship,” recalls Edgar.

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Darlyn and her father Edgar in the NICU.

Darlyn also has underdeveloped lungs (a condition known as pulmonary hypoplasia), which makes it a struggle to breathe on her own. She lacks a fully formed esophagus, meaning she also can’t swallow or eat on her own either. During Mirian’s pregnancy there was a build-up of amniotic fluid due to Darlyn’s duodenal atresia (a blockage of her small intestine), so the baby was especially active and moved around constantly. The only thing that calmed her down was playing music ― everything from lullabies to classic rock did the trick. Knowing their baby loved music even before she was born, her parents gave her the middle name Melody.

“From day one she has been the melody of our lives,” Mirian says.

Darlyn and her mother in the NICU at CHOC Children's
Darlyn and her mother in the NICU at CHOC Children’s.

Music has continued to play a big role in the now seventh-month-old’s life. Daily music therapy sessions conducted in tandem with occupational therapy sessions have helped her make progress on clinical goals such as developing fine motor skills. Other goals she’s already accomplished include standing for longer periods of time, reaching for and grasping toys tightly, and visual tracking.

A music therapy session conducted in tandem with occupational therapy in the NICU.
A music therapy session conducted in tandem with occupational therapy in the NICU.

“Before starting music therapy, Darlyn wasn’t very active and she often lost oxygen very quickly,” Brie says. “This baby is a new baby since experiencing music therapy.”

Environmental music helps create a soothing space to teach patients to calm themselves in an over-stimulated environment, which can help them heal, even after they go home.

“From the outside, it may look simple, as if I am just serenading a baby in a soothing tone, but I’m working hand in hand with their developmental team to help them reach clinical milestones.”

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A music therapy session conducted in tandem with occupational therapy in the NICU.

Darlyn’s care team is vast. Her medical team at CHOC sees music therapy as a trusted partner in helping Darlyn achieve her clinical goals. Her support system includes: Dr. Irfan Ahmad, a neonatologist; Dr. Peter Yu, a pediatric general and thoracic surgeon; and pediatric specialists from gastroenterology pulmonology, cardiology, infectious disease, the NICU developmental team (made up of occupational, physical and speech therapists), and a dedicated team of NICU nurses.

“We love and appreciate our NICU nurses more than we can even put into words,” Mirian says. “Without them, this journey would be more difficult and more heartbreaking. They take care of Darlyn as if she was their own baby girl.”

Jamie, a NICU nurse, celebrates July 4th with Darlyn.
Jamie, a NICU nurse, celebrates July 4th with Darlyn.

“Music helps calm down infants,” says Dr. Ahmad. “During their fetal life, they are exposed to rhythmic sounds, such as their mother’s heartbeat. They get accustomed to these sounds, and after birth when they hear music with a similar rhythm, they like it. Older neonates become more interactive with rhythmic music, and they look forward to their sessions.”

Darlyn isn’t the only one who has been looking forward to her daily music therapy sessions― her mom does too. After each session, her developmental team calls Mirian to give a full report on her occupational therapy progress and disposition.

Her parent’s high level of engagement is deeply appreciated by her care team.

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Darlyn’s parents chose a Snow White theme for her first Halloween, which she celebrated in CHOC’s NICU.

“Darlyn’s parents are amazing. They ask good questions, and they trust us to take good care of their little girl. It would be hard to tackle this level of complexity without their trust,” says Dr. Yu. “We still have a long road ahead of us, and maybe more challenges too, but they are resilient, just like their daughter.”

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Darlyn’s parents have decorate her private room in the CHOC Children’s NICU to feel more like home.

A few months into her time in CHOC’s NICU, Darlyn moved into the brand new 36-room unit with all private rooms. Her family has loved having their own private space.

“In the old unit, it could get noisy and we didn’t feel like we had any privacy. Now, we get to decorate her room and make it feel more like a nursery,” says Mirian.

Darlyn's parents have decorate her private room in the CHOC Children's NICU to feel more like home.
Darlyn’s parents have decorate her private room in the CHOC Children’s NICU to feel more like home.

The family has displayed notes of encouragement from loved ones and her favorite nurses- including nurse Jamie, who taught Darlyn how to stick out her tongue. They’ve even hung up the outfit she’ll wear when she finally gets to go home.

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Darlyn’s parents have hung up the outfit she’ll wear when she finally gets to go home from the NICU.
Learn more about music therapy at CHOC

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Music Therapy at CHOC Provides Healing, Positive Diversion

It is a known fact that listening to music can soothe one’s soul, but studies have shown that music can also promote the physical healing process. Some of the benefits that aid healing include pain management, relaxation, motor movement, enhancement of self-esteem and other social skills, and providing a positive diversion.

DSC_8947And, with the recent opening of our new in-house studio, Seacrest Studios, located in the Bill Holmes Tower at CHOC Children’s, enjoying music is just the beginning. The 652-square-foot facility includes five guest microphones; production-quality video cameras; and a green screen that will allow for patient participation in video projects. Live performances in nearby areas will also be broadcast through the studio.

We spoke to Eric Mammen, Music Therapist in CHOC Children’s Child Life Department, who shared the benefits of music therapy and having our very own multimedia studio at CHOC!

Q:  How long have you been at CHOC Children’s, and how did you become interested in this field?
A:  I have been at CHOC for just under 5 years and first became interested in music therapy while I was studying music in college. A class within the music curriculum was called, “Inside the Music Industry” and we had a different presentation each week about various career options available to those with musical talents.  I saw a presentation about music therapy and I knew in that moment I was going to be a music therapist.

Q:  What is music therapy?
A:  Music Therapy is the clinical and evidence-based use of music interventions to accomplish individualized goals within a therapeutic relationship by a credentialed professional who has completed an approved music therapy program. To the untrained eye, or from the patient’s perspective, we are just playing instruments and singing songs.  However, in reality I am using the music to achieve quantitative and qualitative non-musical goals set by the patient care team.

Q:  What are some of the changes you have seen in patients who have participated in music therapy?

Eric Mammen, MT-BC, music therapist at CHOC Children's
Eric Mammen, music therapist at CHOC Children’s

A:  I have seen children use an extremity that they have been neglecting since a surgery and a child sit up for the first time in weeks to engage with the musical experience. Every day I see children laughing and playing while undergoing intensive chemo therapy. A 5-year-old little girl who was on the oncology floor for an extended period of time, immediately told me and her parents me that she forgot that she was in the hospital during our  “music time.” Many times the parents have tears of joy to see their child having fun and being a kid again, if not for a few minutes.

With the teens and young adults, we do song writing, song recording and learn how to play instruments. When I give the patient their CD with their own voice or original song, I always tell them that they have to listen to their music in their car as they drive away from the hospital – a victory song if you will.

Q:  How will the new Seacrest Studios benefit the kids at CHOC?
A:  We are so lucky to have a space within the hospital like Seacrest Studios.  To be able to broadcast audio and video throughout the hospital allows our patients to express themselves and relate to one another on a deeply personal and emotional level.

We broadcast the songs that the patients may write or sing within the music therapy sessions, during the radio shows. The patient can come down to the studio and be interviewed and share about their song. This studio allows them tell their story, share their experiences, and let the other children know that they are not alone in their battle.  We have great volunteers to help the patients feel welcomed and special when they are “on-air.”  Music is powerful and this new studio allows the patients at CHOC to experience that power in new and exciting ways.

Learn more about specialized therapeutic programs at CHOC. 

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