“The national recognition for CHOC’s cancer program is well-deserved. There’s nowhere else I’d rather have gone through treatment than CHOC,” says 17-year-old Sydney Sigafus, CHOC patient and cancer survivor. “Everyone who works at CHOC cares about you as a person, not just a patient. I was included in every decision and conversation about my care.”
The Best Children’s Hospitals rankings were introduced by U.S. News in 2007 to help families of children with rare or life-threatening diseases find the best medical care available. Only the nation’s top 50 pediatric facilities are distinguished in 10 pediatric specialties, based on survival rates, nurse staffing, procedure and patient volumes, reputation and additional outcomes data. The availability of clinical resources, infection rates and compliance with best practices are also factored into the rankings.
“We understand how scary it can be for parents whose children are dealing with life-threatening illnesses or injuries. That’s why we are committed to the highest standards of care, safety and service,” says Dr. James Cappon, CHOC’s chief quality officer. “While we are proud of our accolades, including being named a best children’s hospital, we remain focused on preserving the magic of childhood for all kids, whether they are seriously ill or healthy, or somewhere in between.”
The American Association of Critical-Care Nurses (AACN) recently conferred a gold-level Beacon Award for Excellence in the pediatric intensive care unit (PICU) at CHOC Children’s Hospital. This is the third ...
Johanna and her husband Graham were expecting a healthy baby. Already parents to one little girl, they were looking forward to expanding their family.
At Johanna’s 33-week anatomy scan, she and Graham were thrilled to learn they were expecting a girl, but shocked to learn she might have club foot, a birth defect where the foot is twisted out of shape or position. They learned there was a chance it could be due to a neurological defect since everything else was showing up as normal.
“We started mentally preparing ourselves for our baby to have a club foot,” Johanna said. “We had another anatomy scan, but they couldn’t say for certain what was going on.”
On January 26, 2018 Johanna delivered a baby girl named Angelina via c-section. A neonatologist was in the delivery room in case Angelina needed immediate medical attention after birth. She was having trouble swallowing and was monitored in that hospital’s neonatal intensive care unit (NICU).
Three days later, a CHOC neonatologist rounding at the delivery hospital recognized that Angelina needed a higher level of care and a bigger team of specialists. He suggested that she might need an MRI to give doctors a better look at her brain, and determine if her condition was neurological.
“Even though I’d never been to there, I knew that when it was an option to go to CHOC, you go to CHOC,” Johanna said.
Their older daughter Genevieve had been born at St. Joseph Hospital in Orange, next door to CHOC Children’s Hospital.
“I was so freaked out before I had my first child, because of all the things that can go wrong during childbirth. I delivered Genevieve at St. Joseph because I liked knowing that CHOC as right next door if we needed them” Johanna said. “When they gave us the option to send Angelina to CHOC, there was no question—we just immediately went.”
Angelina was admitted to CHOC’s NICU and evaluated by neonatologist Dr. John Tran, of CHOC’s neurocritical NICU. Special rooms of CHOC’s NICU are designated for the neurocritical NICU, where neonatologists and neurologists have the expertise and equipment to carefully treat babies with neurological issues.
An MRI showed that Angelina had polymicrogyria, a condition characterized by abnormal brain development. Johanna and Graham had never heard of this condition and had a hard time processing the diagnosis. Then they met with Dr. Donald Phillips, a pediatric neurologist at CHOC.
He explained to the family that typically, the surface of the brain has many ridges and folds, called gyri. In babies born with polymicrogyria, their brain surface has too many folds that are too small to process information received, which leads to problems with body functioning, similar to the effect a stroke can have on the brain.
Dr. Tran explained the spectrum of care for polymicrogyria. Some patients are nonverbal, some go to school, and some even live with this condition and never know. It was too soon to tell where on that spectrum Angelina would fall.
“Caring for babies with neurological conditions can be difficult. Not only are you medically treating a newborn baby, but you are also counseling a family and giving them an uncertain prognosis,” says Dr. Tran. “In the neurocritical NICU, our first goal it to treat the baby’s underlying condition. The second goal is to educate the most important members of our care team― the parents. We know that the NICU is not a part of the birth plan, but our job is to help alleviate some of the anxiety that comes with uncertainty. We strive to optimize the potential of our patients, whatever it might be, as they go home.”
The diagnosis was a lot for her parents to take in.
“We knew we were getting the best care for our daughter, but it was such heavy news,” Johanna said. “Even with a typical kid, we don’t really know what their life will be like. Every life is a gift. Once I started going towards that mentality, I realized that nothing is certain, even with typical kids.”
At her delivery hospital, one of the red flags that Angelina needed a higher level of care was that she kept crashing when she was breastfeeding.
“It made me freaked out to feed my daughter,” Johanna said.
Soon after coming to CHOC, Angelina began swallowing therapy. When someone experiences swallowing difficulty, they are at risk for food or liquid entering their lungs, called aspiration, which may lead to pneumonia. Karin Mitchell, a speech and language pathologist who specializes in the NICU setting, worked with Angelina on swallowing safety. Karin guided baby Angelina through exercises for her mouth and tongue to learn how to properly swallow saliva. Then, they could work on breastfeeding support and syringe feeding.
Angelina couldn’t move her legs when she was born, and her parents weren’t sure if she ever would. Thanks to physical therapy, today she can bend her legs more than 90 degrees.
Throughout their stay in the NICU, Johanna and Graham were thankful to have the ability to sleep overnight in their daughter’s private room. Because Angelina was born during flu season, her 3-year-old sister couldn’t visit the NICU. Her parents would stay at CHOC all day, go home to do their older daughter’s bedtime routine, and then one parent return to CHOC to sleep alongside their new baby.
“We had the privacy we needed, and I felt comfortable doing kangaroo (skin to skin) care,” Johanna said. “I hadn’t planned on my baby staying in the hospital, and at least having our own room, and even something as small as being able to watch TV gave me a small sense of normalcy.”
Johanna and Graham also appreciated the sense of normalcy provided by a Super Bowl party thrown for parents on the unit. An infant CPR class offered on the unit helped them feel more prepared to eventually take their baby girl home.
For big sister Genevieve, CHOC offers an innovative webcam system so family members can be together and bond with their newborns when they can’t be at the bedside. The system allows families to see real-time, live video of their infant remotely, from anywhere they can securely log onto the internet.
“CHOC had a lot of things in place, like the secure camera in Angelina’s room, to make things easier on us as a family,” Johanna said.
A month after she was born, Angelina got to go home for the first time.
“We were so ready to take her home, and finally be together as a family,” Johanna said. “But it was still a little nerve-wracking. We bought four different types of baby monitors; we were used to seeing her surrounded by machines.”
A few weeks later, Angelina began swallowing therapy twice per week and physical therapy three times per week. Now 15 months old, the amount of progress she has made has made her parents proud.
She couldn’t move her legs at birth, but a year later she is rolling and reaching. Her parents credit her CHOC physical therapist Lauren Bojorquez.
“Lauren didn’t just think of what Angelina was doing now; she was always thinking ahead about what would benefit her in the future,” Johanna said.
For example, Lauren and Angelina worked on rolling because it would eventually help her learn to sit. When babies roll, it helps develops muscles that will later help them sit.
Meanwhile, Angelina was working with CHOC speech and language pathologist Annie Tsai to learn how to cough, swallow, and accept food by mouth. Swallowing therapy focused not on quantity of food consumed but on quality of how the child feeds or swallows safely. Angelina’s work with Annie focuses on movement, strength and coordination within the mouth to prepare for eventually swallowing food.
Angelina still receives most of her nourishment through a feeding tube, also called a g-tube. The tube can stay in a patient’s stomach for months or years and allows the child to receive fluids, medicines and nutrition when they can’t take in enough nutrition by mouth. Every few months, Angelina sees gastroenterologist Dr. Jeffrey Ho for follow-up appointments for nutrition, feedings and g-tube care. Dr. Ho remains in close contact with Annie, her speech and language pathologist.
“Being able to eat in a typical manner is always the goal,” says Dr. Ho. “Every baby and child are different. Right now, we are focusing on what we can do to better optimize her potential to orally feed.”
Now, Angelina can sit in a highchair, bring her hands to her mouth, accept small tastes by mouth and better clear her congestion especially when she’s sick.
“Something I hadn’t realized before Angelina was how big a part food plays in our culture. As people get older, going out to eat or meeting for coffee is a social activity. I was sad that she wouldn’t get to have those same experiences,” Johanna said. “When she started to accept tastes by mouth, it made me think of her in the future, and being able to go out with friends and at least taste something, and still participate socially.”
To further practice feeding therapy at home, Angelina has a mesh pacifier typically used to soothe teething babies. Her parents often put the same foods in her pacifier as the rest of the family is eating. So far, there hasn’t been a food she’s tried that she hasn’t liked.
Angelina’s paternal grandma was an adult speech and language pathologist by training. When Angelina started speech therapy, she updated her license and certification to help her granddaughter at home. She comes to some of her sessions at CHOC and learns from Angelina’s care team.
Also participating in therapy is big sister Genevieve, who helps hold the pacifier and can even spoon-feed her baby sister, with a little bit of help.
“I am super grateful for CHOC,” Johanna said. “That’s why our family started participating in CHOC Walk when Angelina was born.”
These days, Angelina likes playing with toys, playing with her big sister, and listening to all types of music.
“I had a lot of preconceptions about disabilities and special needs,” Johanna said. “Having a child with special needs is not what I thought it would be. It’s better than that.”
Rocio Macias was driving when her 4-year-old daughter, Isabella, coughed from the backseat.
“Are you OK?” Rocio asked.
“I’m OK,” Isabella answered with a giggle.
While likely mundane for many parents, this exchange ...
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.
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.
“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.
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.
“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.”
By Marina Birch, registered nurse, neonatal intensive care unit, and graduate of CHOC Children’s RN Residency in Pediatrics program
Nursing school taught me many things, but nothing compares to what I have learned during the CHOC Children’s RN Residency program. Experiencing uplifting days and watching your patients heal helps you see the difference you make in patients’ lives. I hadn’t realized how one amazing day will inspire you to come back to work after you have a rough day.
My patients and their families have taught me lessons I would never have learned by myself. During one shift, I had the privilege of caring for a sweet baby girl who was admitted to the NICU a few hours after she was born. Her mother had barely been able to hold her before the baby began having trouble breathing and was intubated. During my day with her we were able to pull out her umbilical vessel catheter, something that allows blood to be drawn for the baby without repeated needle sticks. In addition to this making the baby more comfortable, this allowed her parents to dress her in a onesie for the very first time. I still remember the pastel onesie that read “Little Miss Sunshine.” We then were able to allow her loving parents to hold her without an IV pole attached to her or a machine breathing on her behalf. Her parents had been waiting for this moment for a long time.
That is one of my all-time favorite days at work because the look on her parents’ faces is something I will always remember. They had wide eyes and massive smiles while holding and looking down at their little one. Something so simple as holding and dressing their child was a huge event they had been waiting for since she was born. Giving parents opportunities to hold their child and emphasizing these moments are what they will remember about their time at CHOC.
By Amanda Paragas, registered nurse, CHOC Children’s cardiovascular intensive care unit
The CHOC Children’s RN Residency Program is a 17-week program that is specifically customized to meet the requirements of the ...
Olivia was unexpectedly born two months premature and spent the first seven months of her life in the CHOC Children’s neonatal intensive care unit (NICU). During some moments of their extended NICU stay, her parents weren’t sure if they would ever get to take their baby girl home.
From the day she was born, Olivia had been exposed to a high level of stimulation in the hospital setting. Despite the NICU’s environment of healing, the beeping of machines, and steady flow of clinicians in and out of her room had overwhelmed Olivia and made her weary of physical touch.
“Even though the doctors and nurses were very gentle with her, and everything was done with her best interest in mind, it’s a natural outcome for someone who has spent their entire life thus far in a hospital to be apprehensive of physical touch,” says Leilani, Olivia’s mother.
The NICU’s developmental team quickly saw that Olivia would benefit from music therapy, and introduced Olivia’s family to Brie Mattioli, a board-certified music therapist at CHOC who specializes in the NICU setting.
Initial goals of music therapy for Olivia included pain management, learning how to self-soothe, and self-regulation. Once her pain improved, she could show more self-expression and even develop preferences for certain types of music. (Her favorite song is “Rise Up” by Andra Day.)
Sometimes Brie’s goal was to help Olivia get to sleep, which is healing. During other sessions, their goals were focused on development and stimulation.
The calming effects of music therapy was just what Olivia needed.
Afterall, she underwent her first in a series of surgeries when she was just 2 weeks old. During prenatal scans, doctors discovered that Olivia had enlarged kidneys, and at birth they discovered her stomach was enlarged as well. Surgery was a priority. Under the care of Dr. Peter Yu, pediatric general and thoracic surgeon, Olivia’s intestines were repaired. Another surgery, when Olivia was 2 months old, shortened her lengthy spinal cord.
Olivia also showed traits of Noonan Syndrome ― a rare genetic disorder that affects one in 1,000 to one in 2,500 people. Noonan Syndrome is commonly associated with physical characteristics like atypical facial characteristics and a short stature, and clinical symptoms like heart defects, bleeding problems, feeding issues, developmental delays and malformations of bones in the rib cage. Although Olivia seemed to exhibit mild physical characteristics of the syndrome, she displayed prominent clinical symptoms.
While she underwent genetic testing for Noonan Syndrome, Olivia’s care team also indicated that she was a candidate for genomic sequencing, the process for determining someone’s complete DNA sequence. Through a partnership with Rady Children’s Hospital, some critically ill infants and children in CHOC’s intensive care units have access to rapid whole genome sequencing. The research collaborative intends to decrease the time between an acute diagnosis and the implementation of effective treatment for difficult-to-diagnose cases. Olivia was genetically tested as were her parents. Two weeks later, the results came in. Neither parent tested positive for Noonan Syndrome, but Olivia did. Since neither parent was a carrier, this meant that Olivia had a uniquely altered gene that resulted in the syndrome.
“When the results came back, we were in disbelief and grieving,” Leilani recalls. “The news was unexpected and heartbreaking. We had never heard of Noonan Syndrome and we had done most of the genetic testing offered during my pregnancy. Our baby was so innocent, and she didn’t ask for any of this. I found myself fast-forwarding to the future and wondered what life would look like for her.”
Music as a journey to healing
While in the hospital, Olivia saw Brie four times a week for music therapy. The more music therapy sessions Olivia had, the more relaxed she became in a sometimes-stressful hospital environment.
“When bodies are relaxed, they heal better,” Brie says. “More opportunities for relaxation mean more opportunities for healing, positive gains and progress.”
In addition to helping patients make progress towards clinical goals, music therapy can provide a sense of normalcy to families in the midst of an emotional time.
“Music promotes a sense of positivity and peace in the room,” Brie says. “It wasn’t the nursery they planned to bring their baby home to, but it provides a sense of normalcy to families.”
The practice resonated with Leilani, who had even considered pursuing a career in music therapy in college. While pregnant with Olivia, she would frequently play music, everything from Ed Sheeran to N*SYNC for her daughter.
“My pregnancy was difficult, and music had always been a form of therapy to me,” Leilani says.
When Olivia was discharged from the NICU, her parents were given a CD specially recorded by Brie with Olivia’s favorite music therapy songs so she could continue healing at home.
“No parent signs up to be in the hospital for all those months,” Leilani recalls. “But I am so happy that CHOC was there when we needed them. CHOC was the right place for Olivia.”
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 ...