The benefits of music therapy: Antonio’s story

A typically happy and energetic Antonio began to feel isolated during an extended hospitalization. His music therapist Rebekah helped him feel more social, while providing “normalized” experiences for Antonio and his family.

At CHOC, music therapy is just one of the specialized therapeutic programs offered through the Cherese Mari Laulhere Child Life Department.

When Antonio was a baby, he was diagnosed with an immune system disorder called chronic granulomatous disease (CGD), which meant his white blood cells couldn’t properly fight bacteria and infections. He got sick more than other kids and took twice-daily medications, plus injections three times per week. Antonio was 9 years old when doctors determined he was a good candidate for a bone marrow transplant, so that his body could learn to make infection-fighting blood cells. His infant brother was a perfect match and served as his donor.

After a bone marrow transplant, the immune system is very weak, and patients are typically kept in isolation with limited visitors and other precautions in place in order to protect their fragile health. Antonio spent about six weeks in isolation.

At first, he was skeptical of music therapy, but he came around quickly.

“When I first went to Antonio’s room, he was playing video games in bed. He didn’t look at me or respond to me, so I told him I would simply tell his mom who I was and what music therapy was about, and he could listen if he wanted to,” Rebekah said. “By the time I sang the second line of his favorite song, he transitioned from lying in bed to sitting up, smiling and singing along with me. His mom played along with an avocado shaker, his infant siblings were both shaking maracas. The feel of the room had been transformed”

Since hospitalizations also impact siblings and parents deeply, Rebekah strives to include families in music therapy sessions whenever she can. After their initial session, Antonio was eager to engage in any musical experience that Rebekah suggested.

“In the middle of a long hospitalizations, there would be days Antonio was in a funk and the only thing he wanted to do was play video games,” his mom Maria said. “But when Rebekah came to his room, he would immediately turn off his video games, smile, happily get out of bed, and interact with her.”

At first glance, music therapy might look like simply singing or playing instruments, but the evidence-based work of a board-certified music therapist supports a patient’s clinical goals. In the medical setting these goals may range from promoting symptom management, like pain or nausea; increasing emotional expression related to diagnosis and hospitalization; or normalizing the hospital environment and promoting typical developmental milestones.

Antonio and Rebekah have a jam session in Seacrest Studios.

Some of Antonio’s goals for music therapy included decreasing isolation, increasing engagement in preferred activities, and managing stress and anxiety. Children who remain engaged with their environment typically respond to stress in a more positive way. By creating songs about Antonio’s favorite foods and hobbies, he can focus on the healthy aspects of himself—a reminder that he is more than his diagnosis, treatment or hospitalization. These goals were established to counteract the potential negative impacts that a prolonged isolation and hospitalization can bring.

Sessions were filled with creativity, laughter and smiles – from Antonio, his siblings and his mom. Some days, he and Rebekah wrote songs about Antonio’s favorite things.  Other days they wrote about his mom or favorite nurses. During music therapy, Antonio also frequently created original music through playing ukulele, drums and guitar. Since young patients often don’t get to make many decisions, they worked in opportunities for Antonio to feel autonomous and “direct” the other band members (his siblings and mom).

“Music therapy cheered up my son while he was in isolation,” Maria said. “It makes me happy that CHOC has things like this for kids when they can’t leave their rooms.”

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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.

Tavik_after_CPAM_surgery
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.

tavik-dr-yu-cpam-surgery
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.

tavik-birthday-cake
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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    My daughter’s journey from seizures to surgery

    By Celeste P., mom of CHOC Children’s patient Camila

    When my daughter Camila was going through epilepsy surgery, I read stories about other kids’ success, and gleaned hope from them. As much as I learned from her doctors and nurses, it was helpful to read a parent’s perspective. I now share our journey in the hopes that it will be a source of comfort to other parents.

    A mother’s instinct

    During my pregnancy, an ultrasound showed that my baby had heart abnormalities. Camila underwent an MRI after she was born, and the imaging confirmed she had tuberous sclerosis complex (TSC) — a disorder that causes growths in multiple organs including the brain, heart, kidney and lungs.

    The growths in her brain associated with TSC often cause seizures. In the days after Camila was born, I noticed the right side of her body seemed to twitch, and my instincts told me she was having seizures. I mentioned it to her nurse, but she dismissed my worries.

    We were sent home as if everything were normal, but my gut told me something was wrong. That’s when I called CHOC Children’s. Ahead of our appointment with a CHOC neurologist, I kept a journal to track Camila’s episodes, including what her body did and how often it happened.

    The journey begins

    We met Dr. Lily Tran, a pediatric neurologist with special training in epilepsy, when my daughter was a few months old. Over the next few years, we tried several different treatment options including the ketogenic diet, steroid treatment and countless medications.

    Camila_monitoring
    Camila undergoing monitoring

    Most treatments would follow the same pattern — the seizures would stop for a couple months, but then they’d come back stronger than they were before. Any progress Camila made during those seizure-free months would disappear, and she’d regress even further.

    My husband and I just wanted to do everything possible for our daughter to have the best outcome.

    Before surgery

    Over the next few years, our lives revolved around trying to find a treatment that would stabilize her seizures. As open and willing as we were to try new treatment, this disease was relentless. Just before Camila’s fourth birthday, her condition finally regressed to the worst point it had ever been.

    She stopped eating, was having 15 to 20 seizures per day, and was constantly throwing up. We had to pull her out of school. We couldn’t leave the house because she could no longer hold her head up, and I was scared to put her in her car seat. I had to take a leave of absence  from my job because my daughter’s health was deteriorating so badly.

    We weren’t living anymore; we were in survival mode.

    I had been pushing for surgery for a couple years but had wanted to try every other treatment option before we got to that point. When Camila stopped eating, smiling and going to the restroom, I was done trying treatment.

    Dr. Tran confirmed through a series of tests that Camila was a candidate for surgery.

    dr-lily-tran-choc-childrens
    Dr. Lily Tran, a pediatric neurologist and epileptologist at CHOC Children’s

    Guides on our journey

    Before we met Dr. Joffre Olaya, a pediatric neurosurgeon at CHOC, Dr. Tran said, “I’ve worked with a lot of neurosurgeons in my career, and Dr. Olaya is amazing. I wouldn’t put your daughter in his hands if I didn’t trust him.”

    joffre-olaya-md
    Dr. Joffre Olaya, pediatric neurosurgeon at CHOC Children’s

    We knew surgery was the right decision, and that we had a good team in place, but as a mom I was still worried.

    Camila’s care team at CHOC walked us through the whole process from surgery to recovery. Since most of Camila’s seizures originated from the left side of her brain, the plan was to disconnect the right and left sides of her brain and remove a portion of her left temporal lobe. This essentially “quieted down” the left side of her brain.

    Camila’s care team answered all our questions. Although their job was to care for my daughter, they did a good job caring for us as parents, too.

    Any lingering worries I had subsided when I happened to meet the mom of another Dr. Olaya patient at a grocery store in the weeks before surgery. What started as a stranger complimenting my daughter’s blanket turned into sharing stories and experiences and ended with total peace of mind.

    I needed another parent to tell me it was going to be OK. She told me not to be scared and reminded me that we were in good hands with Dr. Olaya. That woman also put me in touch with another mom whose child had undergone the same surgery Camila was scheduled for. Being able to connect with a parent who understood exactly what I was going for meant the world to me.

    Recovering from epilepsy surgery

    Camila’s surgery lasted more than six hours.

    While she recovered in the hospital, Dr. Olaya visited her every single day to check on her. He had a wonderful bedside manner.

    Deciding to put our daughter through brain surgery was the biggest decision my husband and I had ever made, and I don’t know if we would’ve been as comfortable with that decision without Dr. Tran and Dr. Olaya.

    Camila spent a month at CHOC recovering from surgery, and then she moved to a rehabilitation facility. Extensive rehabilitation is needed to help the brain continue healing after surgery. While she was there, she developed hydrocephalus— fluid buildup within the brain. This prompted a trip back to CHOC for a surgery to drain the fluid, and a one-month hospital stay to recover from surgery.  We went back to CHOC for another surgery to drain that fluid and month-long recovery.

    Life after epilepsy surgery

    These days, Camila is doing amazing. Before surgery, I would have to look at old photos of my daughter to remember what her smile looked like. The first time I saw her smile after surgery, it made everything worth it.

    Camila_birthday
    Camila celebrating her 5th birthday

    Although her seizures returned a few months after surgery, they were less frequent and less severe than before surgery. We didn’t want to put her through another surgery, but fortunately we’ve been able to keep seizures at bay through other treatments.

    As the parent of a child with special needs, we had learned over the years to find our version of normal. We had gotten used to Camila’s feeding tube – a necessity because she was unable to eat by mouth due to her developmental delay caused by TSC, and her frequent seizures. We had normalized frequent trips to the doctor and kept a bag in the car for emergency hospital visits. That was all normal for us.

    We never pictured being able to do things that typical families do all the time: going to the grocery store or the mall, being away from home for more than two hours, traveling, or sleeping well at night knowing your child is safe. Now, those are all realities for us.

    Besides regular checkups, we haven’t had to go back to the hospital since we were discharged from surgery recovery.

    Pre-surgery, Camila wasn’t able to go swimming because of her frequent seizures. Now, she loves going to the pool and playing with other kids.

    We had never let ourselves dream of traveling with my daughter, but we recently took family trips to Disney World and Mexico.

    Camila_swimming
    Camila swimming on vacation

    Camila is back in school, and recently won awards for being the most involved and most improved.

    All we want is for my daughter to be happy; everything else is just the cherry on top.

    My advice to other moms

    To another parent reading this whose child has epilepsy, know that you are not alone.

    Know that it’s OK not to have all the answers. You will want to be strong for your kids, but this is a scary time. It’s OK to feel scared and sad. It’s OK to have bad days. Allow yourself the space and time to feel upset or sad about your situation.

    I’m eternally grateful for the epilepsy mom I met in the grocery store, and the parent she introduced me to as well. In addition to those sources of support, my daughter’s care team helped me get involved with a support group for epilepsy parents. We help one another navigate the medication and treatment process from a parent perspective – something that at times can feel overwhelming. I would encourage any parent who has a child with epilepsy to seek out a similar group.

    You and I may be strangers, but we’re really not — we’re family.

    Learn more about the CHOC Epilepsy Program

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    • Sudden unexpected death in epilepsy: What parents should know
      By Dr. Lily Tran, pediatric neurologist and epileptologist and medical director of CHOC’s comprehensive epilepsy center Sudden unexpected death in epilepsy (SUDEP) occurs when someone with epilepsy suddenly dies unexpectedly and ...
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      At CHOC Children’s, we understand the challenges families face when a child experiences a seizure. Our Comprehensive Epilepsy Program is a national leader in pediatric epilepsy care, offering cutting-edge diagnostics, ...
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      Seizures are mysterious. They’re hard to predict and they can’t be seen, except with special tests of the brain. So, what causes seizures?

    One family, two NICU stays

    Each year, one in 10 babies in the U.S. are born prematurely. For the Cushing family, that statistic is two in two. Eleanor and Spencer’s eldest son, James, was born at just 24 weeks gestation. Their newest addition, Walter, was born at 31 weeks.

    Today, both boys are doing well, thanks to respective stays in the CHOC Children’s small baby unit (SBU), a special unit within the neonatal intensive care unit (NICU) that focuses on caring for the unique needs of the smallest and sickest babies.

    Big brother James

    James Theodore was born at a local hospital weighing just 1 pound 6 ounces. He was transferred to CHOC when he was 1 day old and spent four and a half months in CHOC’s SBU.

    james-birth-small-baby-unit
    James, shortly after his birth.

    James’ SBU stay – July to November – was filled with myriad health challenges, in addition to his goals of gaining weight and learning to breathe on his own. During his hospitalization, James fought off a bloodstream infection, was intubated multiple times to help him breathe, underwent a minor cardiac procedure and eye surgery, and worked through feeding challenges. By the time he graduated from the SBU, his weight was up to 6 pounds. He was discharged with supplemental oxygen and a pulse oximeter to monitor the oxygen levels in his blood and had multiple follow-up appointments to track his progress.

    Throughout a lengthy hospitalization, CHOC staff made sure the Cushings still had the opportunity to celebrate traditional milestones with their new baby – including his first Halloween. He was dressed up as Winnie the Pooh – in a Build-A-Bear costume, since typical Halloween costumes were still too big for him. His parents and nurses donned coordinating outfits to round out the Hundred Acre Wood characters.

    James is now 3 years old. He’s smaller than other kids his age and has a slight speech delay, along with a new prescription for glasses. But despite his early start in life, James is doing well.

    Each year on James’ birthday, the Cushings return to CHOC’s SBU to visit the doctors and nurses who cared for him during his early days.

    James visit_Dr. Bhakta
    Each year on his birthday, James visits the CHOC staff who cared for him as an infant. He’s pictured here with his dad Spencer (left) and Dr. Kushal Bhakta, medical director of CHOC’s SBU.

    “Despite James’ life-threatening obstacles, the SBU team was able to care for our son and save his life,” Eleanor says.

    Little brother Walter

    Due to her existing medical issues, Eleanor knew she would likely deliver early with any additional pregnancies. When she and Spencer were ready to add another child to their family, they switched medical plans so that she could eventually deliver at St. Joseph Hospital in Orange, right next door to CHOC’s expert neonatologists and other pediatric specialists.

    Walter Rudolph was born at 31 weeks gestation and admitted to CHOC’s SBU, just like his older brother. At birth, he weighed just 3 pounds, 7 ounces. Walter’s goals in the SBU focused on growing and gaining weight. Six weeks after birth – and two weeks before his original due date – he was discharged from the hospital. In that time, he had grown to 5 pounds, 11 ounces.

    walter_small baby unit
    Eleanor holds her newborn son Walter, alongside smiling big brother James.

    During Walter’s SBU stay, he was cared for by many of the same doctors, nurses, and developmental and respiratory therapists who cared for his older brother.

    “When James was born, it was so nice to see so many familiar faces from our first SBU stay,” Eleanor says.

    These familiar faces included Dr. Kushal Bhakta, medical director of CHOC’s SBU, and Dr. Michel Mikhael, a CHOC neonatologist.

    “Our medical team was not only super smart, but they were also warm and compassionate,” Eleanor says. “There was always a theme with staff; they were always asking, ‘Do you have any questions? Can I get you anything?’”

    Eleanor and Spencer are both nurses by trade, but at CHOC they got to focus on just being parents.

    “Because of our medical backgrounds, we knew what the machines and monitors were doing, but we didn’t have to worry about any of that. We got to focus on just being parents,” Eleanor says.

    walter-nicu-graduation
    Walter, on his graduation day from CHOC’s NICU. His graduation cap was knit by CHOC volunteers, and his graduation certificate showcases his impressive growth in the NICU.

    With two NICU stays behind her family, Eleanor’s message to CHOC staff is a simple one.

    “Thank you to everyone who walked us through this journey,” she says. “We are a stronger family because of it.”

    Learn more about CHOC's small baby unit

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    From CHOC mom to CHOC employee

    “You look like you could use a good cup of coffee,” Maria would say from time to time to a tired parent at CHOC Children’s at Mission Hospital. “Oh yes!” they’d reply as she’d make them a cup.

    Maria understands that a warm cup of coffee doesn’t just help sustain a parent who’s running low on sleep, but also gives them back a small sense of normalcy while their child is hospitalized.

    Maria, a former department assistant in the administrative offices of CHOC at Mission who recently transferred to the laboratory at CHOC Children’s Hospital in Orange, knows this all too well. Her son Nehemiah, who is now a happy and healthy 11-year-old boy, was born with a heart condition and spent the first four months of his life at CHOC.

    “If I see a mom struggling, I would try to do my best to be there for them because I understood what they were going through” she says. “They’re comforted knowing that someone understands.”

    Delivering next door to CHOC

    Thanks to a prenatal ultrasound, Maria and her husband Juan knew there was a problem with their son’s heart. But doctors told them they wouldn’t know the extent of the problem until he was born. Maria chose to deliver her son at St. Joseph Hospital in Orange so that they’d be next door to CHOC, and he would have close access to any specialized care he might need.

    Shortly after Nehemiah was born, doctors performed an echocardiogram, a common and safe procedure that helps doctors look at how the heart is working. Dr. Anthony Chang, a pediatric cardiologist who is today CHOC’s chief intelligence and innovation officer, was present at Nehemiah’s birth.

    “I was so scared for my son, but I felt like he was in good hands,” recalls Maria. “Dr. Chang explained Nehemiah’s condition and that he needed to be transported to CHOC for emergency surgery. He said it was a race against time.”

    Nehemiah was born with interrupted aortic arch and ventricular septal defect, a condition with a large hole in the heart and blockage of the main artery feeding the body. Normally a hole in the heart would be considered bad news, but that hole helped him live because it allowed blood to circulate until corrective surgery could be done.

    When Nehemiah was two days old, he underwent his first in what would become a series of heart surgeries, performed by Dr. Richard Gates, CHOC’s medical director of cardiothoracic surgery and co-medical director of CHOC’s Heart Institute.

    After Nehemiah recovered from surgery in the cardiovascular intensive care unit (CVICU), he was transferred to CHOC’s neonatal intensive care unit (NICU). He had a feeding tube to help him eat, but as a step towards going home, he needed to work on eating on his own.

    Nehemiah spent his first Christmas in the hospital, and his parents weren’t sure when they would be able to bring their baby home.

    The day after Christmas, Nehemiah’s condition worsened when he contracted a blood infection called septicemia. Babies under 3 months can contract this because their immune systems haven’t developed enough to fight off overwhelming infections that originate elsewhere in their body. Once he was stabilized, his care team opened his chest so they could administer a vacuum-assisted closure (VAC) to help soak up the infection. A suction pump device connected to a tube with a foam sponge on the end, which was placed into Nehemiah’s chest to soak up the infection. His dressings were changed regularly for several weeks until the infection was gone. Once he recovered, his care team closed his wound and he was transferred back to the CVICU.

    It takes a village

    It would be another few months before Nehemiah would be able to go home. During that time, CHOC became home for his family. Juan would shuffle back and forth between hospital and the family’s home, bringing Nehemiah’s siblings Ethan and Giovanni, who were 3 years old and 10 years old at the time, to visit their baby brother. Maria’s mom would help the family and visit as well. During Nehemiah’s months-long hospitalization, Maria stayed by his side and never went home.

    “It took a village to get my little guy through this ordeal,” Maria said.

    A four-month hospital stay

    Before Nehemiah was discharged after more than four months in the hospital, his parents received education and training from his doctors and nurses, so they would be able to care for him at home. He was discharged with a feeding tube, oxygen tank and medication.

    “We were so excited to finally bring him home. In a sense, it was like we all got to finally go home,” Maria recalls. “My other two kids had essentially been living with their grandma, I had been at the hospital, and my husband had been going back and forth. We were finally together under one roof.”

    Nehemiah’s heart was fragile, so as he grew up he would sometimes get sick more easily, and more severely, than his brothers and friends.

    “If he would get sick with just a little cold, he would go from zero to 10,” Maria says.

    Sometimes that would include seizures, which lead to two hospitalizations.

    A second heart surgery

    Nehemiah has undergone one additional surgery to repair a blockage that developed between his heart and great aortic artery, called a subaortic membrane.

    “After his last heart surgery, his seizures stopped, and he started becoming normal,” Maria said.

    These days, Nehemiah, who loves sports and music, visits CHOC every six months for check-ups with Dr. Chang to see how his heart and arteries are progressing as he gets older.

    “His team always wants to know as he is growing, are the arteries growing with him? Eventually, he’ll need another procedure someday,” Maria said.

    Despite semi-frequent trips to CHOC, Nehemiah is not afraid of doctors because for him, doctor appointments are second nature, according to Maria. Nehemiah has spent so much of his life in and out of CHOC that he refers to it as “My CHOC.”

    A few years ago, when Maria was looking for a new job, her personal connection to CHOC was a big factor in her search, she says.

    “I felt like CHOC was somewhere I’d want to work because I had so many positive experiences here as a mom. Everybody was very friendly. The nurses were good with all my kids, and with me too,” she said. “I remember that little things went a long way, and I try to bring that to my work here now.”

    Learn more about the Heart Institute at CHOC Children's

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