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.
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.
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.
“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.”
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.”
“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.
“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.”
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.
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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