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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CHOC Emergency Department Honored for Exceptional Practice and Innovative Performance

The Julia and George Argyros Emergency Department at CHOC Children’s Hospital is one of only three emergency departments in California — and 22 in the country — to be named a 2017 Lantern Award recipient from the Emergency Nurses Association.

The honor recognizes emergency departments across the nation for demonstrating excellence and innovation in leadership, practice, education, advocacy and research.

Recipients of the award went through a rigorous application process, during which they had to provide outcome metrics, as well as descriptive examples that highlighted the following:

  • Practice – qualities that foster professional pride, confidence and a community of support for emergency nurses
  • Leadership – operational improvement initiatives, including new systems and processes that positively impact department operations
  • Education – quality and accessible education that instills knowledge and enhances competencies
  • Advocacy – efforts that enhance the emergency nursing profession and quality patient care
  • Research – quality improvement research and the evaluation of clinical outcomes

“Our team is dedicated to providing safe, quality care based on evidence-based practices.  We are honored to have our commitment recognized by the Emergency Nurses Association, and will continue to push ourselves to provide the best possible emergency medicine and trauma services to the children and families who depend on us,” says Frank Maas, RN, BSN, MBA, director of the CHOC ED.

The 22,000-square-foot, full-service CHOC ED is exclusively dedicated to the treatment of pediatric patients.  It features 31 treatment rooms, including several rapid evaluation and discharge rooms and three triage suites.

The department will be presented with its Lantern Award at the Emergency Nursing Conference 2017 in St. Louis, Missouri this month.

The Lantern Award honors the legacy of Florence Nightingale, referred to as the “Lady of the Lamp” for her actions during the Crimean War.  Working throughout the night, she would bring a lantern to help her see and tend to the wounded soldiers.  She is credited with changing nursing from an untrained job to a skilled, science-based profession.

Learn more about emergency services at CHOC Children's

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CHOC Nurse Following in her Mother’s Footsteps

Spending her lunchtime with her young daughter Monica was something Maria Arreola always enjoyed when working her shift at CHOC Children’s Hospital. Proud of both, she looked forward to the times when Monica could join her at the hospital. And Monica enjoyed it, as well. Little did the two know then just how much of an impact those times together would have on their futures.

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Maria Arreola joined CHOC in 1981 – a dream come true. Eager to get a foot in the door, she accepted a position with the environmental services department in hopes she’d eventually land a spot as a clinical assistant (CA). Six months later, she was working as a CA in oncology.

She loved her job, and particularly enjoyed when her daughter Monica would visit her for lunch. Maria’s co-workers would frequently ask Monica what she wanted to be when she grew up. Her reply was always the same: “a nurse.”

“I saw something very special in Monica, something that told me she would be a wonderful nurse,” says Maria.

Though she didn’t tell her mom. Monica wasn’t always so sure. What she did know, however, is that CHOC was unique.

“Even at a young age, I knew CHOC was different, and I thought it was so special because it was just for kids,” recalls Monica.

The kids are what drew her mom to CHOC.

“I love working with children and their families; it’s my passion. And being at CHOC means I get to care for patients, as well as provide support to their parents. It’s wonderful to be able to make such a difference,” explains Maria.

That desire to make a difference lured Monica to follow in her mom’s footsteps. She joined CHOC in 2007 as a CA in the neurosurgical unit. At the time, Maria was working in that same unit.

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Monica grew up visiting her mom, a registered nurse at CHOC Children’s Hospital, on lunch breaks. Inspired by her mom’s work ethic and compassion for patients, she grew up to be a registered nurse at CHOC.

“Whenever we had the same shifts, I admired my mom’s work ethic and was inspired by her passion and her ability to connect with families,” says Monica.

And like her mom, Monica enjoys practicing patient-and-family-centered care.

“I love being an advocate for my patients, and a voice for those who perhaps can’t verbalize. As care providers, we need to partner with our patients and their families to really understand and meet their needs,” explains Monica.

After a few years, and with encouragement from her mom, manager and co-workers, Monica decided to become a registered nurse. She continued to work part-time as a CA while completing her education. The support from everyone was amazing, says Monica.

Most recently, she completed CHOC’s RN Residency Program.  And, to the delight of her mom and her co-workers, of whom many watched her grow up, she was hired as a registered nurse in the neurosurgical unit. Monica’s mom still works at CHOC, in the neurosurgery clinic. So, while one Arreola works with CHOC Children’s Neuroscience Institute patients on the inpatient side, the other gets to interact with them as outpatients.

“I am so proud of my daughter, of the human being and of the nurse she became. I also still love working at CHOC,” says Maria, who recently celebrated her 25th year. “Having my daughter part of my CHOC family, as well, is amazing.”

When Maria and Monica aren’t working, they enjoy spending time with their family, going on hikes and enjoying Maria’s cooking.

Have you been inspired by a nurse at CHOC? Nominate them for the Daisy Award

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Inspiring the Next Generation of Nurses

In honor of National Nurses Week, and as part of CHOC’s week-long celebration of our incredibly skilled and caring nursing staff, we asked several members of our nursing leadership team what advice they would offer to the next generation of nurses.

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Melanie Patterson, vice president of patient care services and chief nursing officer

Melanie Patterson, senior vice president and chief nursing officer

Q: What advice do  you have for those pursuing their professional aspirations?

A: Recognize your strengths and spend time building on them. Don’t waste time focusing on your flaws; instead, strut your strengths! Know who you are and be that person always. Don’t beat yourself up when something doesn’t go perfectly. Sometimes, what we consider our biggest “mistakes” can make the biggest wake. Realize you make a wake, whether rough waters or not, so make that wake count. Showing your humility in the face of adversity is many times the best gift you can give another person or group.

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Nancy Kraus, service line director of critical care, director of clinical education

Nancy Kraus, service line director of critical care, director of clinical education

Q: What advice do you have for aspiring nurses?

A: In any profession there are a variety of roles and responsibilities you can have throughout your career. Typically you choose “A” and think you might progress to “B” or “C.” Don’t rule out “D thru Z.” Sometimes you find what you are most passionate about by stepping outside your comfort zone. Take every opportunity that is offered to you large and small – all will become growth experiences that help you progress personally and professionally. As a young nurse just starting my career I never would have imagined I would have had the opportunity to be a bedside care provider, a college professor, a national public speaker at conferences, a global health volunteer, a peer leader with my physician partners, assist in research, lead an organization to a Magnet award of excellence, mentor others, be “the neighborhood nurse,” and now a director over critical care. All of these opportunities came because early on I decide to say “yes” when opportunities were offered to me to try something new, when someone asked for help, when I joined a group project or chose to be engaged and participate outside of my primary position.

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Alisa McCormick, nurse manager, pediatric intensive care unit

Alisa McCormick, nurse manager, pediatric intensive care unit

Q: What is something you wish you would have known when you began your career?

A: I wish I would have had the advice that a friend gave me recently. The advice was to always have someone behind me that I am helping to grow and develop, and someone ahead of me that is a mentor, helping me to grow and develop. Embracing such a simple concept of balance as a new nurse would have helped me focus and develop my career much sooner. I waited over 20 years to return to school mostly out of fear. Returning to school allowed me to gain the skill and confidence to step out of my comfort zone, become a manager, participate in evidenced-based projects, lead hospital-wide initiatives, mentor and develop my staff, and most importantly support the development of a unit-based mentor program for new nurses in the PICU.

Susan See, nurse manager, neuroscience unit

Q: What advice do you have for aspiring nurses?

A: Everyone has their own unique story. It is up to you to determine what your story looks like. Whether you are early in your career or you have been in healthcare for years, there is no better time than right now to keep your passion alive and active by embracing opportunities and striving to reach new goals. Decide what is most important to you, make deliberate choices, and run full force to attain your goals. There is something magically satisfying about doing what you love. It makes you better at what you do, and best of all, you will shine that satisfaction. Thoreau said, “Never look back unless you are planning to go that way”. Be uniquely you and continue to create what you want your story to look like!

Have you been inspired by a nurse at CHOC? Nominate them for the Daisy Award

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Oncology Patient Grows Up to Become CHOC Oncology Nurse

When most adults think back to their earliest memory, they might remember a field trip in preschool or a vacation with family. But Caroline, a registered nurse in the Hyundai Cancer Institute at CHOC Children’s, remembers CHOC. She was diagnosed with cancer at age two, and spent the next two and a half years in and out of treatment.

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Caroline was diagnosed with cancer at age two. Years later, after winning her battle, she returned to CHOC as a registered nurse.

“I remember the playrooms, my nurses, the child life specialists, and the friends I made in the hospital,” she recalls. “Several families got really close because of our shared experiences and regularly got together for years after we all finished treatment.”

Caroline now works alongside several of the nurses and physicians who helped her beat cancer as a young child.

Karen DeAnda, a registered nurse at CHOC, was the first one to care for Caroline after her diagnosis, and started Caroline’s very first IV.

“I do recall the day Caroline came in for the first time. She was tiny, and I was a brand new nurse,” DeAnda says. “Those initial first days when a patient is being diagnosed is very difficult on the entire family. I clearly remember the day she was diagnosed and helping her through that first evening in the hospital. It was a surreal experience to see her so many years later as a grown woman; it made my heart pound. She is truly an inspiration to our patients and families.”

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Caroline was a young child when she was at CHOC fighting cancer. Today, she’s a registered nurse at CHOC standing alongside patients fighting their own cancer battles.

Caroline’s parents were at her bedside as often as they could be, but when they weren’t able to be there, her nurses stepped in.

“My nurses were the people who were always there with me when my parents couldn’t be. It was like a big family,” she says. “My mom was a huge worrier, and for her to trust my nurses was a big thing.”

Although Caroline was very young when she was diagnosed with cancer, she has a unique connection to the patients she now cares for and their families.

“Caroline’s compassion and firsthand experience is a gift to our patients and their families. Whether or not she even shares her story with her patients, the fact that she has walked that walk, regardless of her young age at the time, allows her to have immense empathy and understanding for what the entire family is experiencing,” DeAnda says.

The impact that Caroline’s care team had on her as a patient directly influenced her career path.

“I’ve always been interested in medicine,” she says. “There was never a question about what I wanted to do when I grew up; I always knew that I would become an oncology nurse at CHOC.”

For a short time during her undergraduate studies, she momentarily lost sight of that goal, and was struggling in school. At the time, CHOC was in the midst of constructing the Bill Holmes Tower, and Caroline’s dad arranged for the two of them to have a behind-the-scenes tour. One of Caroline’s primary nurses during her cancer treatment, Melanie Patterson, now the vice president of patient care services and chief nursing officer at CHOC, showed them the new technology and amenities that would be coming to CHOC, and it reignited Caroline’s passion.

She applied to nursing school the next day, and began volunteering in CHOC’s oncology unit, two things that made her former nurse very proud.

“I remember Caroline’s beautiful hair the day she was diagnosed. This beautiful toddler girl— my heart melted for her immediately. She was very young when she was treated, but this prepared her for the emotional, mental and physical toll of oncology nursing” Patterson says. “We have many former patients working at CHOC, and it makes my heart and soul glow knowing that CHOC nurses have impacted kids growing into adults that way.”

Once on the receiving end of the small acts of kindness from nurses — who once went out of their way to pick up Caroline’s favorite food when she was sick from treatment and wouldn’t eat—Caroline now understands the importance of going the extra mile for patients and families.

“Remembering how a mom takes her coffee in the morning, or seeing a child who is cold and bringing them a heated blanket when they didn’t even know we had those, can sometimes be the thing that changes their outlook on the whole day, and such a welcome surprise for them,” Caroline says.

Transitioning from patient to nurse did not happen without a few unexpected revelations.

“When I became a nurse, I was surprised at how much this career is a labor of love. When I was a patient, I had no idea how much work nurses did behind the scenes when I wasn’t looking,” Caroline says. “I felt like the center of their whole world. I didn’t know they had a lot of centers of their world.”

As much as Caroline enjoys caring for pediatric oncology patients the way she once was cared for, she loves even more when she gets to send them home.

“What I love most about working at CHOC is seeing patients get healthy and sending them home, where they belong,” Caroline says. “I also love seeing so many people come together for one child’s health. Seeing that happen day after day is really powerful.”

Have you been inspired by a nurse at CHOC? Nominate them for the Daisy Award

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