My son’s journey with congenital pulmonary airway malformation (CPAM)

By Monica Cruz, mother of CHOC Children’s patient Tavik

When my fiancé Ryan and I found out we were having another baby, we were excited but also a little overwhelmed. Our firstborn son Raiden was barely a year old and very strong willed. We weren’t quite ready for another, but we knew we could manage.  We had no idea the journey that lay ahead of us and our new baby, but today we are so grateful that he’s healthy and happy.

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I am so grateful that my son is happy and healthy, after surgery to remove his CPAM.

During an ultrasound when I was 26 weeks, my OB/GYN found a mass on the baby’s lung. They said it was likely congenital pulmonary airway malformation (CPAM). CPAM is a mass or lesions of abnormal lung tissue that forms during pregnancy. The mass or lesions can vary in size. It is usually only in one lung and does not function as normal tissue. We did two more ultrasounds to confirm the diagnosis, and then we were referred to a maternal-fetal medicine specialist (MFM).

Our MFM confirmed that our baby, who we named Tavik, had CPAM.  The cause of this condition is unknown and only 1 out of 25,000 pregnancies are affected. Research shows that this abnormality is not related to anything the mother did or didn’t do during pregnancy. Some think it may be caused by genetics, but there isn’t enough research to confirm this. CPAM was previously referred to as congenital cystic adenomatoid malformation (CCAM).

There was still a lot of time left in my pregnancy, so Tavik’s lungs had more time to grow—but so did the mass. On the ultrasounds, we could see that his heart had been pushed off to the right side. This was a lot to take in and made the next few months extremely stressful.

Babies in the womb who have CPAM are also at risk for hydrops fetalis, or hydrops. When a fetal lung mass pushes on the heart and blood vessels, the heart has trouble pumping blood. If the heart can’t keep up with the baby’s needs, fluid builds up around the lungs and in the belly, a condition called hydrops fetalis. After the baby is born, the fetal lung mass can cause problems because it can get infected (pneumonia) or take up room so that the healthy lung lobes can’t fill with air. I had ultrasounds every two weeks until Tavik’s due date.

Prenatal counseling

We knew Tavik would need care after he was born, so our MFM referred us to Dr. Peter Yu, a pediatric general and thoracic surgeon at CHOC who has special training and expertise in fetal conditions.

My fiancé and I went to CHOC and met Dr. Yu, who explained everything that was going on with the baby in utero, and what would happen after he was born.

The good news was that most babies with CPAM are born with no symptoms and can go home after a few days in the hospital. Surgery to remove the mass on the lung usually comes a few months later, when the babies are bigger, and better able to handle anesthesia. If CPAMs are not removed, they can cause breathing problems or serious lung infections, and sometimes they can even become cancerous later in life.

Dr. Yu was honest with us and educated us that there are some babies who do have complications at birth due to the CPAM and can need immediate surgery after delivery. Not knowing what that outcome would be was one of the hardest things I’ve ever had to process.

Dr. Yu was so knowledgeable and made us feel more at ease about our baby’s diagnosis. We knew that Tavik was in great hands.

Tavik’s birth

Tavik was born on Nov. 15, 2018 weighing 7 lbs., 10 oz. and 21 inches long. We were so lucky and beyond happy that he came out without any complications, and that he didn’t need immediate surgery. Unfortunately, later that night when the doctors came back to check in on us, they noticed he was working extra hard to breathe. They weren’t sure if this was related to his CPAM. He was admitted to the neonatal intensive care unit (NICU) at the delivery hospital and was given oxygen and put on CPAP (continuous positive airway pressure). CPAP delivers constant air pressure into a baby’s nose to help the air sacs in the lung stay open and prevent sleep apnea.

During our NICU stay, doctors performed a chest X-ray and ultrasound to get a better picture of the mass in his lung. They noticed he also had an abnormal blood vessel carrying blood to the lung mass.

Tavik spent eight days in the NICU before he was healthy enough to go home. The doctors determined that his breathing troubles at birth were not caused by the CPAM. He just had some residual fluid from the C-cection.

Two weeks later, we had an appointment with Dr. Yu so he could meet Tavik and we could make surgery plans. A few weeks after that, Tavik had a CT-scan so Dr. Yu could see exactly what was going on inside Tavik’s lung. That gave Dr. Yu a more precise roadmap for surgery.

Surgery day

When Tavik was three months old, he underwent surgery at CHOC Children’s Hospital. It was scary to hand over my baby for surgery, but looking back now, everything seemed to go so smoothly and quickly.

family before cpam surgery
Ryan and I with Tavik before surgery to remove his CPAM.

During the three-hour surgery, Dr. Yu removed the affected part of Tavik’s lung and repaired the blood vessel. While surgery was in progress, a member of Dr. Yu’s team came out to the waiting room every 30 minutes to provide an update to Ryan and me.

When surgery was over, Dr. Yu came out to let us know that he had removed half of Tavik’s left lung, sealed off the artery, and everything had gone smoothly. He showed us photos of what he had been looking at through his scope during surgery.  He did this to also give us a better understanding of what had been going on inside of our son. It was really neat to see.

Dr. Yu performed the surgery thoracoscopically, using minimally invasive instruments. Only three very small incisions had to be made in Tavik’s abdomen to remove the entire mass. Tavik only has three tiny incisions on his left side. It’s mind-blowing to think that you can safely remove half a baby’s lung through three tiny incisions. Since Tavik had this surgery as a baby, the remaining portion of his lung will be able to grow and compensate for what was removed as he grows.

Tavik_minimal scarring_cpam
Dr. Yu performed the surgery thoracoscopically, using a microscope and two tools. That means only three very small incisions had to be made to remove the entire mass.

Tavik spent only three nights in the hospital. The first two days after surgery were hard for Tavik; he was groggy from the anesthesia, and he made some sad sounds, which was a little heartbreaking for us to hear as parents. Thanks to the awesome rooms at CHOC I was able to stay with Tavik the entire time, both day and night. During this time, I stayed with Tavik, while Ryan and Raiden stayed close to CHOC at the Ronald McDonald House. We had stayed there during our unexpected NICU stay, and they invited us back during Tavik’s surgical stay. Without them, our family wouldn’t have been able to stay together and so close to Tavik.

By the third day after surgery, Tavik was alert, smiling and getting right back to his happy self. It’s seriously amazing how fast babies heal! I was a little nervous getting ready to leave on the fourth day. The doctors constantly reassured me by telling me that he was healing wonderfully and that he was in great shape to head home. They were right. By the next day, Tavik was doing even better—he had no pain or discomfort and his incisions were already fading. You would have never known that he just had a major surgery.

A few weeks later, we had a follow-up appointment with Dr. Yu, who confirmed everything still looked great and Tavik was now CPAM-free.

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Tavik with his surgeon, Dr. Peter Yu.

Tavik today

Although Tavik underwent a major surgery as a baby, looking at him now, you’d never know what he had been through. You can barely see his scars, and he’s growing like any little boy should—he’s in the 80th percentile for height and weight. His prognosis is great, and we look forward to a normal life with him.

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Tavik enjoying cake at his first birthday party.

My son is such a sweet, loving, happy boy with a little bit of spice to his personality. He absolutely loves music and always wants to play in the water. He has so much fun going on walks with his older siblings Leila and Raiden.

Tavik is our little miracle baby! He has kept us on our toes since before he was born and continues to do so today. He’s always making us laugh and smile.

We are so blessed and are so grateful that he is healthy.

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    Fighting through GERD: Bowie and Finley’s story

    From the very beginning, Melissa and Kris knew their twins were fighters—they were also a surprise; the couple hadn’t been sure if they were going to be able to have more children.

    “We knew these twins had a purpose and a reason. From the very beginning of their lives, they were a miracle all around.”

    Melissa experienced hyperemesis gravidarum also known as HG, a rare condition characterized by extreme nausea and vomiting. Most pregnant women experience morning sickness, but less than 3% experience HG, which can lead to near-constant vomiting, dehydration, weight loss and malnutrition.

    “From the second I was pregnant, I was extremely ill. The three of us shouldn’t have lived through my pregnancy, but we did,” Melissa says. “The twins are little fighters. From the womb until now, they’re just little fighters.”

    Her body was so depleted that she was put on extended bedrest and hospitalized on and off throughout her pregnancy. She needed a PICC line, or peripherally inserted central catheter, for two-thirds of her pregnancy. PICC lines are sometimes needed when intravenous (IV) medications are required over a long period of time.

    “The babies were getting all their nutrients from me, and I was so sick. It was really scary,” she says. “One night while on hospitalized bedrest I needed four blood transfusions. My body was shutting down. The babies were ok through everything—the blood transfusions, me getting IVs, copious amounts of potassium, medications, everything. They just kept going.”

    Showing signs of gastroesophageal reflux disease (GERD) 

    A few days after they were born, Bowie and Finley started showing signs of gastroesophageal reflux (GER). This occurs when a small amount of acidic stomach fluid or food in the stomach goes back up into the esophagus or swallowing tube. Two-thirds of healthy infants experience gastroesophageal reflux.

    When the reflux causes intolerable discomfort or complications, children may be experiencing gastroesophageal reflux disease (GERD). Nurses at the delivery hospital told the parents the babies were spitting up and throwing up more than they should be. By the time they went home a couple days after they were born, they had lost a bit more of their birth weight than they were supposed to. Melissa and Kris’ older children Scotlynd and Kingston had GER when they were younger, so they thought they knew what to expect.

    Bowie and Finley Lyman’s first photo with their parents.

    Most cases of GER resolve without medication. In rare cases, treatment of GERD requires surgery.

    “The older kids just got through it and was never life-threatening,” Melissa said. “With the twins, it went from ‘all babies spit up, they will be ok like their siblings’ to failure to thrive and life-threatening episodes.”

    Each twin had life-threatening episodes of GERD. Melissa recalls an especially frightening night with Finley.

    “After one middle of the night feeding, Finley threw up and that time, I wasn’t sure if she was ok. I went back in her nursery to check on her and she wasn’t breathing. It was the most terrifying moment. She was limp. I screamed for my husband. We tried everything to wake her up.”

    Their pediatrician referred them to CHOC pediatric gastroenterologist Dr. Greg Wong. The two physicians worked together to improve GERD symptoms. Despite trying to change feeding times, amount and type of formula, and medication, the symptoms just weren’t going away. 

    For Bowie and Finley, pictured here, GER runs in the family. Their older siblings had experienced GER but unlike the twins, they didn’t suffer from GERD or require surgery.

    “We wanted to stay within the CHOC network. That was important to me because our older son had been treated at CHOC, and we fell in love with the CHOC family,” Melissa says. “We know how not only wonderful and caring they are, but from a medical perspective too. We wanted the best for them and we felt CHOC was the best.”

    Bowie and Finley’s path to surgery

    The family hadn’t wanted to prematurely jump to surgery as an option, but in the end, it was the right decision. They were referred to Dr. Peter Yu, a pediatric general and thoracic surgeon at CHOC.

    “Dr. Yu made us feel so comfortable. He really knew what he was doing,” Melissa said. “The CHOC team felt that we had exhausted all other options, and that surgery was the best option for the twins.”

    Bowie and Finley underwent surgery when they were about 6 months old. Dr. Yu performed a minimally invasive procedure known as laparoscopic Nissen fundoplication to repair the twins’ GERD. At the same time, he repaired their hernias.

    “They are not identical babies, but they had identical surgeries,” Melissa says.

    Surgery was performed on one baby at a time. Afterwards, they were brought to recovery rooms right next to each other, so one parent could be with each twin, and they could be close by.

    “Before surgery, the babies were so sickly,” Melissa said. “After surgery, they are completely different babies.”

    The twins are now feeding, growing and thriving. One of many benefits of this surgery has been less laundry. Melissa and Kris used to have a full hamper of laundry every day because the twins went through clothes and sheets so often.

    Celebrating holidays in the hospital

    Melissa’s birthday was the day after surgery.

    “It was another birthday spent in the hospital, but it put things in perspective,” she said. “The best gift I could’ve gotten was for them to be healthy and thrive again. You think about the important things, and everything else fades away.”

    Helmet therapy and physical therapy

    Part of the family’s efforts to control the twins’ side effects of GERD had been to keep them in one position to limit their acid reflux. Because of this, they weren’t able to do tummy time which helps prevent flat spots on the back of the head.

    After surgery, Finley and Bowie wore helmets for three months that helped correct the growth and shape of their skull.

    Because of GERD, the twins’ backs were strong, but their cores and trunks were weak. They are in physical therapy to strengthen their bodies and help them roll and move around using the correct muscles.

    A message to other moms

    Melissa’s advice for other moms taking care of babies with GERD is to just keep asking questions and remember that every baby is unique.

    “There are a lot of levels of GERD, and I didn’t know how severe it could be until it happened to us,” she said. “I learned not to compare my babies to anyone else’s. Every kid is different.”

    She added that this experience taught her that trials are temporary, and things will get better.

    “Even in the heart of it when you can’t get through another day, and you have to take it minute by minute,” she said. “I always say it’s only temporary. It might not get better right away, but it will.

    Celebrating milestones

    Last Mother’s Day, Melissa was on bedrest in the hospital, days away from giving birth to her twins. This year, she’s looking forward to celebrating her family being complete—and healthy.

    The Lyman family

    “You have to look back and see where you’ve come from to see how wonderful it is. Last year wasn’t this way. I spent last Mother’s Day with them in the hospital preparing to give birth,” she recalls. “It’s amazing to see how far we have come in a year. We are moving forward, and we can truly enjoy them and enjoy our time as a whole family.”

    The twins’ first birthday falls right after Mother’s Day. The family is planning a big celebration in their neighborhood.

    “We want to include everybody that was there for them from my pregnancy through the first year of life,” Melissa says. “We want to celebrate that they made it and thank everyone for their help. Everything has been so up and down and up and down, and now were in the clear.”

    VIDEO: CHOC Docs answer common questions about surgery

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    Stella’s Journey with Bronchopulmonary Sequestration (BPS)

    By Sharlene Ramsingh, mom of CHOC Children’s patient Stella

    My daughter Stella first came to CHOC Children’s when she was just a baby, but our journey really started before she was even born. At my 20-week ultrasound, my husband Havinder and I were so excited to find out the sex of our baby. We were having a girl!

    That excitement quickly turned into a feeling of unease when the physician noticed an abnormal growth in the baby’s lung area. From that point on, we had to go back to the doctor’s office for monthly and eventually weekly ultrasounds to monitor the size of the mass. After additional imaging, doctors diagnosed her with bronchopulmonary sequestration (BPS). This means that abnormal tissue or a cyst formed outside her lung but wasn’t connected to her airway.

    It was determined that the size of the mass wouldn’t affect delivery, and I was able to carry her to term and proceed with my birth plan. When Stella was born, there was a room full of doctors and nurses in case she wasn’t breathing. Time stood still when she came out and the room was so quiet. Everyone was waiting to hear her cry. And when she let out a tiny little sound, it felt like everyone in the room exhaled at once.

    Despite the mass on her lung, she was healthy, so we got to take her home a few days after she was born. Stella’s first few months of life were filled with a series of appointments and tests. When we met Dr. Peter Yu, a pediatric general and thoracic surgeon at CHOC, he was able to give us confirmation that Stella needed surgery to remove the mass. At that point, Stella had grown bigger and stronger and was better prepared for the anesthesia required for surgery. We knew that our daughter was in good hands with Dr. Yu. He was patient, caring and we really felt like our daughter was the most important thing to him.

    stella-mom-BPS-surgery
    Sharlene with her daughter Stella on the morning of surgery to remove her bronchopulmonary sequestration (BPS).

    Stella was just five months old when she underwent surgery at CHOC Children’s Hospital. Thankfully, surgery went perfectly, and the whole team was great. The pediatric anesthesiologist was amazing and able to deal with my daughter’s small veins.

    Before Stella’s diagnosis, I had never heard of BPS. During my pregnancy and up until the surgery I was part of a private Facebook group for parents of babies with BPS. Their success stories helped me manage the stress and anxiety that I experienced during this time. I was also able to ask questions to moms who went through the surgery and who had healthy kids. My husband and I were very private about her condition during my pregnancy, and only told our parents and siblings. We were dealing with our own emotions, and we just didn’t feel up to having to explain BPS over and over again. When it did come up, we would say she a birth defect that lead to a growth in her lungs, and that it would need to be removed.

    These days, Stella is doing amazing. She sprints around the house with her five-year-old brother on a daily basis, and she has a voice that will make the windows shake. She goes to swim lessons every week.

    stella-after-BPS-surgery-with-dog
    Stella continues to thrive after surgery to remove her bronchopulmonary sequestration (BPS).

    The worrisome portion of my pregnancy and Stella’s surgery seem like such a distant memory. You would never know by looking at my daughter that she ever had any complications.

    My advice to new parents facing an unexpected diagnosis is to take things one step at a time. Don’t get caught up in the negative thoughts that may happen and trust your child is in good hands with Dr. Yu and at CHOC. Always remember that this too shall pass.

    Meet our surgeons

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    The Appendix: 5 Common Questions

    More than 700 kids are treated for appendicitis at CHOC Children’s every year. The appendectomy is one of the most commonly performed surgeries in the world. But just what is the appendix, and why does it send so many people to the emergency room with stomach pain?

    Dr. Peter Yu, CHOC Children’s pediatric general and thoracic surgeon, explains everything you’ve ever wondered about the appendix, and more.

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    Dr. Peter Yu, pediatric general and thoracic surgeon at CHOC Children’s

     

    1. What does the appendix do?

    The appendix is a small, finger-like projection that sticks out of the large intestine, located in the right side of the abdomen. It weighs about as much as an earthworm. In fact, its old-fashioned name is vermiform appendix, which means worm-like, Dr. Yu explains.

    Everyone’s appendix is different. Some are long, some are short and stubby. But one thing they all have in common is that they are not necessary for a happy, healthy life.

    “We are not sure if the appendix has a purpose. Some doctors don’t believe it does anything,” Dr. Yu says. “Some think it plays a role in the development of the immune system, and some believe it harbors ‘good bacteria’ that helps intestinal health. The bottom line, though, is that appendicitis is common, and patients do extremely well after removal of their appendix.”

    1. What causes appendicitis?

    Bacteria naturally live in the large intestine and flow in and out of the appendix. Sometimes, the opening to the appendix gets blocked. Either constipation, a hard piece of stool called a “fecalith,” or enlarged lymph nodes cause these blockages.

    The blockage traps the bacteria inside where it festers and multiplies. This leads to inflammation of the organ. If left untreated, the appendix can burst, releasing the infectious bacteria into the body.

    Symptoms of a Burst or Inflamed Appendix

    What are signs of appendicitis?

    • sudden severe pain
    • pain that starts near the belly button and moves to the lower abdomen on the right side
    • fever, nausea or vomiting

    To diagnose appendicitis, the Julia and George Argyros Emergency Department at CHOC Children’s Hospital will check your child’s blood for signs of an infection and will do an ultrasound of the abdomen. While many hospitals use a CT scan to diagnose appendicitis, CHOC radiologists and sonographers have the training and experience to make a diagnosis using ultrasound, in order to minimize your child’s exposure to radiation. If the ultrasound is inconclusive, the radiologist may conduct a CT scan.

    1. How does the surgeon remove the appendix?

    The surgeon will perform a procedure called a laparoscopic appendectomy to remove the appendix. A pediatric anesthesiologist will put your child to sleep using general anesthesia. The procedure takes about 30 minutes, though CHOC’s pediatric general surgeons can remove the organ in less than 10 minutes if needed.

    During surgery, three tiny incisions are made on the abdomen. Carbon dioxide is blown into the belly to create a dome, giving the surgeon room to work. Small surgical tools are inserted in two of the incisions and a laparoscopic camera is inserted in the third. The appendix is identified, stapled or tied off, and removed.

    The surgeon closes the incisions with surgical glue and dissolvable strips. In most cases, children will stay in the hospital for one day before the doctor discharges them. They should have no heavy activity or sports for two weeks after surgery and can usually return to school quickly, often even the next day.

    1. What do you do with the appendix after you take it out?

    Pathologists then inspect the removed appendix in the pathology department under a microscope. This inspection is important because it will confirm the diagnosis of appendicitis and rule out other conditions such as ulcerative colitis, Crohn’s disease and carcinoid. Your surgeon will update you with the results during your follow-up appointment.

    1. What if my appendix bursts?

    “Fortunately, perforated appendicitis is less common than non-perforated appendicitis, but it can happen,” Dr. Yu says. “For some, the appendix can burst quickly, and for others it does not burst at all. There are many factors that a surgeon will consider before deciding whether to operate immediately, or to wait.”

    If your surgeon decides to wait, then treatment can include antibiotics, placement of a drain in the abdomen, and nutrition through an IV if needed. Most patients improve in several days, after which the doctor discharges them. Your surgeon will then schedule your child for an interval appendectomy, which is removal of the appendix 8-12 weeks later. This gives the body time to recover from the infection and inflammation, making surgery safer and less complicated.

    The CHOC Emergency Department, equipped to treat appendicitis 24 hours a day, with pediatric surgeons ready for all situations is mainly for kids and teens.

    Learn more about appendicitis in kids and teens

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    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

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