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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My Journey to Becoming a NICU Nurse: April’s Story

By April Bell, registered nurse at CHOC Children’s and mother of CHOC NICU graduates Mikayla and Emma

I’ve been a nurse at CHOC for 15 years. I started working here as a nurse aide while I was in nursing school and after graduation, I entered the RN Residency program as a nurse in the medical/surgical unit. I learned a lot about time management and honed my nursing skills starting IVs, inserting feeding tubes and catheters, and giving medications. I enjoyed the time I spent on that unit, but after about five years I was looking for another challenge. The new pediatric intensive care unit (PICU) and new cardiovascular intensive care unit (CVICU) had just opened on the sixth floor, and I was considering a nurse fellowship in the PICU. However, before I could start that process, I found out I was pregnant with twins.

Not only twins, but very high-risk twins called monoamniotic-monochorionic, or “MoMo.” These types of twins share one amniotic sac and the risk is that their umbilical cords could become tangled and/or compressed. These rare twins have a 50 percent survival rate. I knew they would most likely be delivered early; my OB-GYN did not want to deliver past 32 weeks gestation. We ended up making it only to 28 weeks, as their cords were knotted together twice and wrapped around my daughter, Mikayla’s neck, twice.

Mikayla weighed only one pound, 13 ounces when she was born. Emma was two pounds, six ounces.

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April was a registered nurse in the medical/surgical unit at CHOC Children’s when her twins were born premature. Their family’s experience in the neonatal intensive care unit (NICU) inspired her to become a NICU nurse.

From the moment the twins were delivered, the neonatal intensive care unit (NICU) team that was in my delivery room made a huge impression on me including the neonatologist who was present at the delivery, Dr. Daryoush Bassiri. I met Dr. Bassiri the week before my twins were born, when I was admitted to St. Joseph’s Hospital, next door to CHOC. He told me what I could expect if they were born at 27, 28, 29, 30 weeks, etc. The nurses who were at the delivery were also very supportive and kept me informed about what the plan was for the babies.

Both of my daughters need to be intubated right after delivery, but the nurses made sure I could see them briefly before they left for the NICU. The next few days were quite a roller-coaster, starting when Emma became very sick. Because her lungs were not fully developed, she was placed on a ventilator to help her breathe. The pressure of the ventilator caused her lungs to collapse. She needed two chest tubes to resolve her collapsed lungs. Her lungs also developed pulmonary hypertension (a type of high blood pressure) and pulmonary interstitial emphysema (where air collects outside the normal air space). All of Emma’s lung problems are common conditions in premature babies, but it was still a very scary time. I wasn’t sure if she was going to make it. She was given nitric oxide, a medication to treat breathing problems in premature babies, and finally she started to slowly improve. She took a turn for the better, only to face another setback: she was diagnosed with a heart defect called patent ductus arteriosus (PDA). In some premature babies, the opening between the aorta and the pulmonary artery does not close, as it does in most children.

Her sister, Mikayla, although smaller, was doing much better. She only needed to be intubated for about a day and a half and was on bubble CPAP (continuous positive airway pressure), non-invasive ventilation support for newborns. Mikayla had the same PDA diagnosis as her sister, and received medication to close her PDA. Emma could not get the medication because the doctors were worried about her kidneys, after how sick she had been. So the doctors decided that a surgical repair know as PDA ligation was the way to go. Once again, we were worried about her. She had an excellent surgeon, Dr. Brian Palafox, who explained everything to me and Emma’s dad. Although he told us what possible complications could come from the surgery, everything went very smoothly.

The next few months were filled with more ups and downs, but nothing quite as scary as the first few days. After they mastered breathing on their own, working on feedings was another struggle. They had an amazing team of developmental therapists, lactation consultants and of course, their bedside nurses. I learned so much from everyone that took care of my twins. As a medical/surgical nurse, I had floated to the NICU before, but I had no idea what each preemie went through.

Emma spent 75 days and Mikayla spent 77 days in the NICU. Towards the end of my twins’ NICU stay, I realized that the NICU was where I wanted to be as a nurse. I spoke with one of the NICU managers and told her I was interested in transferring to the NICU. I was surprised to learn that they were, in fact, just starting a nurse fellowship program. When I started my NICU fellowship, I went with the RN Residents to a special NICU consortium taught by the NICU educator at the University of California Irvine. We were there with nurses from NICUs all over Southern California. I finished the NICU fellowship when my daughters were just about 1 year old. I feel like the classes really helped me understand so much more about the development of the neonate and how to care for them.

During the last seven years in the NICU, I have taken care of a variety of babies, from small micro-preemies to babies who have undergone surgery, and babies with heart defects. I helped open the CHOC Children’s NICU at St. Joseph’s Hospital. I have also had the privilege to care for babies in our Small Baby Unit.

After having two micro preemies of my own, I feel I can really relate to a lot of the parents. I have been on the other side of it and know how frustrating and worrisome it can feel.

I enjoy sharing my story with my patient’s families. I have seen firsthand how strong and resilient these babies can be.

I was working the night that we opened the new, all private room NICU. At the end of my night shift, I helped transfer my patients upstairs and get them settled into their new rooms. It was amazing to see how smoothly everything went that morning. It was also exciting to see the babies in their own rooms. My twins were always with other babies in a pod, and it would have been so nice to have a private room. I would’ve loved to have been able to stay overnight and sleep right next to my babies when they were in the NICU, like the parents can do now in our new NICU. It was hard to leave the NICU when my daughters were there. The noise in the pods could get loud at times, and occasionally a baby would be sick and need sterile procedures which meant all non-clinical staff had to leave the unit. The patients did not always have privacy. I am excited for the patients and families that will benefit from our new private room NICU.

Looking at my daughters today, you would never know what they have been through. They are almost 8 years old and they are just about to start second grade. They’re very smart and are excelling in school. They started reading in pre-kindergarten and have been reading at an advanced level ever since; they almost read better than their older brother, Joey. The only long-term effect from being born so premature and facing a mountain of health challenges has been with Emma, who has a raspy voice from left vocal cord paralysis, a common complication from the surgery. I am so grateful to have two healthy girls.

I am also very grateful for the way the CHOC NICU cared for my own children, and I am extremely proud to be part of it as a caregiver.

Take a virtual tour of our new NICU

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The Importance of Self-Care for NICU Parents

Having a hospitalized child can be scary and stressful for parents, especially when that child is a newborn. Between raising a family, working and coping with a hospitalized infant, self-care is often not the first thing that comes to mind for a parent.

In this episode of CHOC Radio, we speak with Karina  Ousley, a clinical social worker in CHOC’s  neonatal intensive care unit (NICU), Diana Hurtado, coordinator for the March of Dimes NICU Family Support program at CHOC, and Marla Dorsey, patient- and family-centered care coordinator, about the importance of NICU parents practicing self care.

CHOC Radio theme music by Pat Jacobs.

Learn what to expect when your baby is in the NICU

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Private Rooms in CHOC’s New NICU Help Parents Stay Close to Their Babies

Parents now will only be steps away from their babies receiving intensive care in the neonatal intensive care unit (NICU) at CHOC Children’s Hospital.

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Private rooms in CHOC’s new NICU help parents stay close to their babies.

Today, we opened our new NICU with 36 all private rooms.

The 25,000-square-foot unit nearly triples the size of our previous Level 4 NICU, which included an open layout that grouped patients in pod-style beds.

The new unit, located on the fourth floor of the Bill Holmes Tower, creates a homey atmosphere with sleeping quarters and storage space outfitted in warm colors and wooden accents to help parents feel more comfortable while their infants receive highly specialized care for extended periods of time.

“CHOC is proud to offer private rooms to our smallest patients and their parents,” said Dr. Vijay Dhar, medical director of CHOC’s NICU. “No one’s vision of parenthood includes a NICU stay, but our new unit will provide parents with the space and privacy to get to know their new baby, and reassurance that they’ll be nearby while their newborn receives the highest level of care.”

Private NICU rooms are a new standard for improved patient outcomes. Benefits for babies cared for in single-family rooms include higher weight at discharge and more rapid weight gain. Also, they require fewer medical procedures and experience less stress, lethargy and pain. Researchers have attributed these findings to increased maternal involvement.

A private-room setting provides space and privacy sought by parents to breastfeed, practice skin-to-skin bonding, and be more intimately involved in their baby’s care. Private rooms allow parents to stay overnight with their newborn, and give staff more access and interaction with the family and patient.

In addition to private rooms, the new space includes other features that will enhance patient care. Should an infant need a sudden surgical procedure, three rooms within the unit can quickly be converted into space for surgeries. The unit will also include a life-saving extracorporeal membrane oxygenation (ECMO) unit. Rooms that adjoin can be used to accommodate triplets.

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Adjoining rooms, such as this room designed for twins and the private room next door, in the CHOC NICU can accommodate triplets.

Safety features include same-handed rooms, where equipment is positioned in the same location among all rooms to reduce human error; room-adjacent nursing alcoves; and an in-unit nutrition lab for the preparation of breast milk and formula.

This new unit also features a family dining space, a room dedicated for siblings, a lactation room and other amenities to ensure the comfort of the entire family.

For several decades, we’ve had the privilege of serving infants requiring the highest level of care. With the unit’s opening, CHOC’s neonatal services now include 72 beds at CHOC Orange and the CHOC Children’s NICU at St. Joseph Hospital, and 22 beds at CHOC Children’s at Mission Hospital. In addition, a team of premier CHOC neonatologists care for babies at hospitals throughout Southern California.

A suite of specialized services comprises the CHOC NICU: the Surgical NICU, which provides dedicated care to babies needing or recovering from surgery; the Small Baby Unit, where infants with extremely low birth weights receive coordinated care; the Neurocritical NICU, where babies with neurological problems are cohorted; and the Cardiac NICU, which provides comprehensive care for neonates with congenital heart defects.

The CHOC Children’s Foundation has raised $4,381,984 toward the new NICU, including lead gifts from the Argyros Family Foundation, Credit Unions for Kids and philanthropist Margaret Sprague.

Take a virtual tour of our new NICU

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Meet CHOC NICU Graduates

As we prepare to celebrate the opening of our all-private-room NICU, say hello to a few graduates of the CHOC NICU.

Dylan & Payton Law

Dylan, age 9, and his younger sister Payton, age 7, were both born 6 weeks premature and cared for by the doctors and nurses of the neonatal intensive care units at both CHOC Children’s and CHOC Children’s at Mission Hospital. Their mom McKenzie shares a thank you to their care teams.

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My family will forever be grateful for the blessings CHOC has given us― our children. Not only did Dr. Hanten save Dylan’s life, but all the nurses, doctors, and staff at CHOC took incredible care of Dylan, giving him strength and providing unforgettable emotional support for our family during a terribly scary time. Two years later those same doctors and nurses took care of his little sister Payton, who also spent a month in the NICU. They treated us like family, not just patients. They calmed our fears, held our hands, and loved our babies. CHOC has a special team of angels here to carry our little ones for us when we needed them the most.

When Dylan was born, doctors and nurses swarmed the delivery room. The doctors administered several doses of epinephrine to Dylan, but he didn’t breathe on his own for 22 minutes. They finally heard a faint heartbeat, but told us the likelihood of Dylan making it through the night was uncertain. At 2 days old he was transported via ambulance to CHOC in Orange, where we found out that he had brain damage. It was devastating to hear that our son may not walk, talk or eat on his own. Today, Dylan is a happy, kind, and compassionate little 9-year-old. He has ataxic cerebral palsy and struggles daily with his hands shaking, but that doesn’t stop him from enjoying school, Jujitsu, playing with his little sister, going to church, doing art projects, and playing outside. -Mackenzie Law

Noah Wenrick


Nine hours after Noah was born, a nurse noticed something was off during a routine check-up, and soon the family was sent to the NICU. Noah was diagnosed with a lung infection and stayed in the NICU for almost two weeks. His mom Ashlie pens a thank you note to his care team.

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A huge thank you from the Wenrick family to the whole CHOC NICU team for all that you do every day! You made us feel like family while Noah was in the NICU. Being new parents it was scary for us, but you helped us understand every step up to the day Noah got to go home! Now he’s a healthy and active 3-year-old. -Ashlie Wenrck

Ryan McLeod


You first met Ryan, a graduate of CHOC’s small baby unit, in November during #PrematurityAwareness Month. Look at him now! Ryan is a happy-go-lucky boy who recently celebrated his first birthday with a trip to Disneyland. At his Mickey Mouse-themed birthday party for family and friends, his parents set up a CHOC Walk station and encouraged their loved ones to join Ryan’s Sidekicks, their first-ever CHOC Walk team. Ryan’s dad says, “The way my wife and I look at things after going through this experience is that we want as many people and possible to gain awareness and support the CHOC NICU and their exceptional Small Baby Unit.”

Austin, Michaela & Caden Shay


Triplets Austin, Michaela and Caden were born a day shy of 31 weeks and spent 80 days in the neonatal intensive care unit at CHOC Children’s at Mission Hospital. Their mom Jennifer, a clinical nurse at CHOC at Mission, shares a thank you for her co-workers who cared for her children.

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On behalf of my entire family, I would like to thank the doctors and nurses that took care of our triplets at CHOC at Mission in the fall and winter of 2009. Austin, Michaela and Caden thrived with the tender loving care provided by the staff. Born a day shy of 31 weeks, Austin weighed 3 lbs. 9 oz., Michaela weighed 3 lbs. 3 oz., and Caden weighed a whopping 2 lbs. 0.5 oz. Despite my nursing knowledge, I was treated first and foremost as a mom. The nurses, doctors, and staff were always very professional in addition to being extremely considerate and attentive to our needs.

We cannot thank you enough for what you have given our family. We truly believe that our children― Caden in particular― would not be here today without the care they received in the NICU. It is because of the dedication of the CHOC at Mission NICU staff that we have three relatively healthy 7-year-olds at home today. What a happy and crazy home it is! Though we can never repay you for all that you have done for our family, we wish to thank you from the bottom of our hearts. You are all honorary aunts and uncles! Without the dedication of this team, I would not be the mommy of four that I am today. You have blessed our family beyond measure.     -Eternally grateful, Jennifer Shay

Willow Dee


After a healthy pregnancy, Willow was born just after 36 weeks via an emergency c-section. She was immediately transported to CHOC for body and brain cooling, to prevent seizure, stroke or damage to the brain. Her mother Cara shares a thank you note to the team that cared for now thriving almost-two-year-old.

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To our CHOC caregivers,

We want to thank you with our entire hearts for truly transforming a nightmare into a beautiful dream. After an extremely healthy pregnancy without any red flags, Willow was born at 36 weeks and 2 days. Twelve hours after my water broke, there was extreme blood loss prompting the nurse to call a code. The on-call OB-GYN at the hospital where I delivered was in my room within seconds. Willow’s heart rate was around 60 beats per minute, only half of what it should be. An emergency cesarean immediately followed. Doctors discovered that I had a very rare condition called velamentous cord insertion where the umbilical cord inserts into the fetal membranes, then travels to the placenta. This means exposed blood vessels are vulnerable to rupture. Willow had lost a substantial amount of blood that required two blood transfusions and she was intubated.

The life-saving, phenomenal level of care that we received from our team at Hoag Hospital quickly continued at CHOC. After a perfectly healthy pregnancy, I never could have foreseen my daughter would be taken via ambulance to a different hospital just five minutes after I saw her for the first time. EVERY single day, I think about our nurses and doctors at CHOC. They were calm, abundantly informative and so gentle. The doctors answered as many questions as we had and we were never rushed. They are truly masters of their craft. Before this experience, I never thought a NICU could be comforting.

The NICU doctor said that Willow had experienced “insult” to her brain; the lack of blood flow had caused hypoxic-ischemic encephalopathy. Fortunately, CHOC has a body and brain-cooling process that is used in situations like this to prevent stroke, seizure and damage to the brain. Our daughter is lucky; her 72-hour cooling process resulted in zero stroke, seizure, or worse.

Today, Willow is 20 months old and thriving! She is a miracle because of all the hands that worked on her. We feel grateful to have spoken on behalf of CHOC over the last 20 months to help raise much needed funds for the new all-private-room NICU that opens this summer. We believe in paying it forward to the future families that now can stay with their baby as they heal. We love our caregivers at CHOC more than they may know.                                               –Love, Cara Dee

Faith Amouroux

Diagnosed at 18 weeks gestation with a congenital diaphragmatic hernia, Faith was born at 40 weeks gestation and spent four months in the neonatal intensive care unit. Today, she is a happy and active six-year-old girl. Her family shares a note of thanks for the team that cared for her.

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Our family thanks God everyday and we are forever grateful for the caring and dedicated NICU team at CHOC. Our daughter, Faith was diagnosed at 18 weeks gestation with a birth defect called CDH (Congenital Diaphragmatic Hernia). We learned that 80 percent of her diaphragm was missing and were told that the statistic were not good. Her chances for survival were slim and if she did survive, she would have many health issues. Faith was born at 40 weeks gestation and after ECMO, CDH repair surgery & four months in NICU she pulled through. Faith is now 6 years old and has had a few minor hurdles but continues to defy the odds. She is doing great. Faith loves to sing, dance, play dress up, jump rope and read. Thank you CHOC; you have an awesome NICU team. -Amouroux Family

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