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.

darlyn-and-her-father-nicu
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.”

darlyn-music-therapy-nicu
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.

darlyn-halloween-costume-nicu
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.”

Darlyn-private-room-decor-nicu
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.

darlyn's-going-home-outfit
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

Related posts:

South Dakota Family Finds Success with CHOC’s Feeding Program

At every pediatrician’s appointment, Christine Egan dreaded putting her daughter, Layla, on the scale.

“I knew her little growth curve. She was below the 0 percent growth curve every single time,” Christine recalled.

Because of a combination of failure to thrive, gastroenteritis and food allergies, Layla received a feeding tube at age 15 months.

The tube helped her get the nutrients she needed and she’d pick up on growth. With a handle on the other underlying issues, the family would begin feeding therapy. But try as they might, the Egans could never reach a place where life without a feeding tube seemed within grasp.

“Other parents think they understand but they don’t,” Christine said. “Picky eaters don’t eat as much or as much of the variety as you’d like them to, but they’re still growing. Layla would eat some things, and it wasn’t a bad variety, but it was two or three bites and say she was done. There was nothing you could do to get her to eat more.”

Finally, when Layla was 5, the family turned to CHOC Children’s multidisciplinary feeding program. In January 2013, Christine and Layla traveled from Sioux Falls, S.D., to Orange, Calif., to undergo an intensive 19-day program where Layla would learn how to eat and Christine would learn how to support her.

The program was a success, and about six months after returning home from CHOC, Layla’s feeding tube was removed. Life has since changed dramatically for the Egans.

feeding program

“The biggest thing was when we could just have a meal and there was no drama. We finally had the kind of meals that we take for granted now,” Christine said. “Before, there would be constant drama. With three meals a day plus two or three snacks, it was five or six battles a day.”

Today, Layla is 9 years old and enjoying fourth grade. She’s doing well and enjoying food, and Christine no longer worries about how much she’s eating.

“She’s going to eat what she needs, and some days it’ll be more and some days less,” she says. “And at dinner time, we can sit down as a family. It’s so simple.”

Learn more about CHOC's feeding program

Related posts:

Not Fighting Cancer Alone: Sydney’s Story

By Sydney Sigafus, cancer warrior and CHOC Children’s patient

As a teenager and an athlete, my life revolves around sports. As a sophomore at Foothill High School, I’m one of the sports anchors for our school newscast. I’m also a member of the JV girls’ basketball team, which has always been like a second family to me.

childhood cancer
Before fighting cancer, Sydney was a member of her school’s JV girls’ basketball team.

During last year’s summer league season, I started to have pains on the right side of my back. I thought I had simply pulled a muscle, so I told my mom about it. Off we went to the pediatrician, who sent us to get an MRI. We were referred to Dr. Nader Nassif, an orthopedic surgeon who sees patients at CHOC. He saw a spot on my upper femur that was small at the time, but that he wanted to keep an eye on. He said it could be a number of things— one of those being cancer— but he didn’t initially think that that’s what it was because of where the spot was on my bone and what it looked like. He told us to come back in three months for more scans.

By our next appointment, the spot had grown by a few millimeters, so we did a biopsy, which is a test that’s performed to examine tissue or cells from a certain part of the body. That test showed that the spot on my femur was cancerous. Dr. Nassif was surprised, since most teens with Ewing’s sarcoma have it in the knees and it grows very quickly, but mine was near my hip and grew very slowly.

Meeting my care team at CHOC

Dr. Nassif told my family that we were going to be working with Dr. Elyssa Rubin, a pediatric oncologist and director of the bone and soft tissue sarcoma treatment program at CHOC. I learned quickly that Dr. Rubin is not only your doctor but also your friend. She would come into my room and not only ask me how I was feeling, but she wanted to know if I was able to see my friends that weekend, if I had made it to the basketball game at school, or if I had seen the latest movie that just came out. I always felt like she cared about me not just as a patient, but as a person. She laid out the game plan very clearly for me and my parents and answered all the questions we had (and some that we asked over and over again). My treatment plan called for six rounds of chemotherapy before surgery and eight rounds after.

childhood cancer
“I learned quickly that Dr. Rubin is not only your doctor but also your friend,” Sydney says. “I always felt like she cared about me not just as a patient, but as a person.”

I was lucky to have the very best nurses. They were amazing throughout my entire journey. It stinks to have nausea or not be able to do something with my friends because my counts were down, or even be able go to school — but my nurses, especially my nurse practitioners Liz Torok and Jody Pathare, have made something that seems so tough, a lot easier.

Physical therapy has played a big role in my life after surgery. My physical therapist Robin Beauregard is a two-time Olympic medalist, so as an athlete, she helps me connect with my treatment. She’s no-nonsense and very witty like me, and it makes me really look forward to physical therapy sessions.

childhood cancer
Thanks to having an Olympic medal winner on her care team, Sydney was able to look forward to physical therapy sessions.

Another group that has made my journey so great has been the child life team. I can’t say enough good things about them, especially Kara, the child life specialist who works with adolescent and young adult patients. She heard I loved sports, and on day one of treatment, she brought me a huge basket filled with swag from my favorite sports teams and even a basketball hoop for my room. I assumed it was a one-time thing, but she has come to visit me every single time I’ve been at CHOC for treatment. She even came into the operating room with me when I needed an epidural for my surgery because I was scared and my parents couldn’t come into the OR with me. It was hard for my parents to be in the waiting room while I was in the OR, but knowing that I had Kara by my side made them feel so much better. During surgery, my tumor was removed and a prosthesis was put in for my upper femur. After finishing eight more rounds of chemotherapy after surgery, my scans confirmed that I was cancer free!

childhood cancer
During her treatment, Sydney quickly bonded with Kara, the child life specialist who works with adolescent and young adult patients.

Every single person I’ve met at CHOC has been amazing — especially the woman who cleaned my room. She called me princess!

Making the hospital feel like home

Not only has child life supported me on my journey, but they’ve also helped make the hospital feel less like a hospital. This goes beyond bringing an Xbox to your room to take your mind off your treatment. It starts with the way CHOC looks  can you imagine receiving treatment in a place that just had white walls and a white floor? CHOC is the opposite. It’s colorful. It has gardens you can go outside and sit in. There are playrooms everywhere. There’s a lounge that’s just for teens. I’m not musical or artistic, but for the patients that are, they’ll bring you instruments and introduce you to a music therapist, or bring you drawing and painting supplies.

Finding support in unexpected places

When I started this journey, I felt so alone. What are the chances I would know another teenager that is going through this? I soon realized that I did have someone who understood what I was going through, someone that I looked up to even before I was diagnosed with cancer. When I was a freshman, there was a senior at my school who was fighting osteosarcoma (a type of bone cancer) in her knee. Claire was an athlete like me before she was diagnosed with cancer. Our school recognized her as Homecoming Queen during her treatment, and I remember watching her use crutches during the ceremony where she received her crown. At the time, I thought she was so amazing, and I was really moved by her story. Six months later I received my own diagnosis. Claire immediately reached out to me, met me at the hospital and has been offering me nonstop support ever since.

Another pleasant surprise was getting to meet the doctor who delivered me 15 years ago! Dr. Gigi Kroll is a member of the CHOC Children’s Foundation Board of Directors, and I got to meet her at a fundraising event for the Hyundai Cancer Institute at CHOC. My mom had a complicated delivery when I was born, and I’d heard a lot growing up about how wonderful her doctor had been. It was so cool to meet her in person, and nice to know that she’s part of making CHOC the amazing hospital it is today.

Choosing to be positive

I’ve always been a happy and positive person, but I’m also realistic. Of course there’s going to be times on this journey when you’re sad, because who doesn’t get upset about cancer? But I’ve learned that if you’re sad, it’s going to make a bad situation ten times worse.

Even with all the support around you, it’s important to realize that there is only so much other people can do for you. There comes a point where you have to do things for yourself and choose to be positive.

childhood cancer
Red Nose Docs were a welcome distraction and source of positivity during Sydney’s treatment.

I try to be positive all the time. I have a great support system, which includes my family, my friends, my doctors, my nurses and child life.

On the day of my surgery, I set a goal to be able to walk back into school for the start of my junior year. A few weeks ago, I accomplished that goal! I’m starting to think about colleges, and I’m looking to study kinesiology. I want to become a pediatric physical therapist and an athletic trainer.

I’ve learned a lot from this journey. My family and I have been incredibly blessed by my care team and other families who have taken us under their wing, and I want to repay them by doing whatever I can to help motivate other patients who may be struggling to stay positive.

Learn more about the Hyundai Cancer Institute at CHOC Children's

Related posts:

CHOC Patient Benefits from World’s Smallest Pacemaker

Sofia Rodriguez and CHOC Children’s cardiologist Dr. Anthony McCanta are making medical history. The petite 12-year-old recently became the smallest and youngest patient to receive the Micra® Transcatheter Pacing System (TPS). The innovative physician, who specializes in pediatric electrophysiology, joins an elite group of doctors in the world who have implanted the device, and is likely the first to do so in a child.

pacemaker
The Micra® Transcatheter Pacing System is about the size of a vitamin.

About the size of a vitamin, Micra TPS, which was approved by the Food and Drug Administration last year, provides the most advanced pacing technology at one-tenth the size of a traditional pacemaker. And unlike traditional pacemakers, the device does not have cardiac leads, which are the wires that carry electricity from the pacemaker to the heart and the other way around. This activity occurs between 100,000 to 200,000 times in most children, eventually putting a strain on the leads. The leads can then break or stop working properly, requiring a new device to be implanted.

In addition to being leadless, the Micra TPS is small enough to be delivered through a catheter and implanted directly into the heart instead of a surgical “pocket” under the skin. This offers patients a safe alternative to conventional pacemakers without the complications associated with leads — all while being cosmetically invisible.

Sofia’s story

Diagnosed shortly after birth with a particularly complex form of tetralogy of fallot, a rare and serious heart condition, Sofia had her first open-heart surgery before turning 1 month old and a second, to implant a traditional pacemaker, when she was 6 months old. Abdominal surgery followed, as did a diagnosis of DiGeorge syndrome, a chromosomal disorder that affects the development of several body systems.

Sofia tackled each health challenge with a fierce determination to survive and, more than that, to enjoy her childhood. Her parents and the team at the CHOC Children’s Heart Institute supported her every step of the way, equally committed to her quality of life.

When the pre-teen needed a new pacing system (the cardiac leads from the first device had broken), Dr. McCanta advocated for the Micra TPS. He knew the benefits it would bring to Sofia, and other CHOC patients.

“The immediate benefit to Sofia is that she does not have another scar on her upper chest. The long-term benefit is she has no cardiac lead in her vein that could break, become infected or cause a blood clot,” explains Dr. McCanta. “When you consider the course of her entire life, the benefit of reducing complications of pacing is almost immeasurable.”

Sofia’s parents are proud of the part she played in the medical milestone. “She’s always been special, and here’s just one more thing that demonstrates how special she truly is,” says Sofia’s dad, Edgar. “We are thankful for people like Dr. McCanta and so impressed with the new technology. We feel truly blessed.”

pacemaker
Sofia and her dog, Yoda

When she’s not on her computer, Sofia loves watching videos and listening to Latin music. She’s outgoing with lots of friends and a bright future ahead of her.

Learn more about the electrophysiology program at CHOC

Related posts:

How a Bone Marrow Transplant Changed My Life

Every three minutes, someone is diagnosed with a blood cancer, like leukemia or lymphoma. As many as seventy percent of these patients don’t have a compatible match in their family, and must hope to find an unrelated donor. You can help these patients increase their odds by joining the Be The Match Registry®, an international registry of potential matches for those seeking a bone marrow transplant. Today, meet six CHOC Children’s patients who have benefited from a bone marrow transplant.

Diego, age 23

I was diagnosed with pre-B Cell acute lymphoblastic leukemia on January 11th, 2009. Thankfully, I landed in a great hospital that quickly gave me hope and strength to fight. Everything was going perfect. I received one year of intense chemo and about two years of remission chemo. Unfortunately, I relapsed one month before finishing my treatment. I hated the fact that I’d have to start from zero with a whole new treatment that included radiation. I relapsed a second time a few months after receiving radiation. I would see and meet other patients who were diagnosed and finished with treatment in only a couple months. When I talked to my doctor about what the next step was, I was happy because I would be receiving the same treatment as the other patients – I would be receiving a bone marrow transplant. Even though it is a quicker treatment, it is also tougher. The first step was finding a matching donor.

I was very lucky that I found a donor in my family; my sister was a 100 percent match! Finding a donor that matches 100 percent means that your risk of side effects is lower. It was just before Christmas that we got news of the match, so on Christmas Day I gave her a card asking for one more gift – if she could be my bone marrow donor. That Christmas, the whole family cried tears of happiness.

bone marrow transplant

Tori, age 21

I have been a patient at CHOC since I was 19, when I was diagnosed with acute myeloid leukemia. After my first round of chemo, my doctors determined that receiving a bone marrow transplant would give me the best chance for remission and lessen the chance for relapse. With three possible matches found on the registry, the first person my doctors called backed out. The second person they called said yes but unfortunately the hospital they went to have tests done at made a mistake on a time-sensitive lab that would have to be redone. My doctor didn’t want me to have to wait any longer to undergo a treatment that could possibly save my life. On April 12, 2016, I received a bone marrow transplant with my dad as my donor. I have been in remission ever since!

bone marrow transplant

Aric, age 25

My bone marrow transplant was on April 14, 2017 as part of leukemia treatment. It was kind of difficult, but I was always positive and kept busy by reading, playing video games, and watching my favorite Netflix show, Stranger Things. My family would come over to play games and bring me fresh clothes. My friends would come over and chill with me, bringing things I needed to make me forget about being in the hospital. They also brought my TV from home so I could play my Xbox better. The first month hit me hard with fevers and vomiting, and it’s weird to say, but I got used to that. Now, I have passed the 100-day mark and I’m so happy and I feel better. I just need to follow my doctors’ orders and I will be okay.

bone marrow transplant

Aileen, age 22

I got diagnosed with sickle cell anemia shortly after birth. For years, I was in and out of the hospital due to my pain crises and other health-related problems. Over time all the complications built up and my bones and organs started getting damaged due to excessive amounts of medications, narcotics and blood transfusions. The doctors told me as I grew older that I would have more complications. When I turned 18, they insisted I get a bone marrow transplant. At first, I didn’t want one because I was afraid of chemo and all the obstacles it would bring. As time went on, my health got worse and my pain crises were more frequent. I would be hospitalized for weeks at a time and then once I got discharged, I’d only be home for maybe a week or two before I had to be admitted again. Once I turned 20, I made the decision to go through the transplant process. I was lucky enough that my brother turned out to be my perfect match. On August 26, 2015, I received my brother’s bone marrow. I am now cured and am happier and healthier than ever. I have not had a pain crisis since! Getting my bone marrow transplant was the best decision I’ve ever made!

bone marrow transplant

Ralph, age 24

I am a two-time cancer survivor and bone marrow transplant recipient. I was diagnosed with testicular cancer at age 14, and relapsed with secondary acute myeloid leukemia at age 19. As soon as my treatment began I was told I was going to need a bone marrow transplant. The bone marrow I received came from the umbilical cord blood of two different European children, not from a single donor’s bone marrow. This experience has taught me that even though the donation pool is great and diverse, there is still more we can be doing to help save lives, not only domestically but also overseas.

bone marrow transplant

Kamron, age 20

My bone marrow donor saved my life! I’ve been in remission ever since I received my donor’s bone marrow. I was diagnosed with non-Hodgkin’s lymphoma at 17 years old and kept relapsing post-treatment. It wasn’t until I was transplanted with a new bone marrow that I’ve been in remission the longest. Please register today and you could help save someone’s life!

Learn more about the Blood and Marrow Transplant Program at CHOC Children's

Related posts: