“Normalizing” the hospital experience is the process of making things like medical equipment and procedures feel less strange or foreign. By doing this, patients and their family members can feel more at ease while at the hospital and will be able to focus on what is most important: feeling better.
Child life specialists have bachelor’s degrees in child life, child development or a related field of study. They also have at least 600 hours of training in a child life clinical internship under the direct supervision of a certified child life specialist. Certified child life specialists have successfully completed the Child Life Professional Certification Exam.
Music therapy is one part of child life. CHOC’s music therapists use music to address physical, emotional, social and cognitive needs of patients of all ages. They can teach patients how to play instruments or even write songs to express themselves or cope with their emotions. Music therapy can help patients manage stress and fear and increase communication.
Child life works with siblings, too. Since a patient’s diagnosis or health journey can impact the whole family, child life specialists can work with siblings to decrease anxiety surrounding diagnosis, treatment or hospitalization by using play and explaining treatment in language appropriate to a sibling’s age and development.
At CHOC, you’ll find child life specialists embedded into virtually every area of the hospital. Outside of CHOC, you could work with a child life specialist in a variety of settings including dental offices, disaster relief, various nonprofits, military services for children, public health, hospice, pediatric summer camps and more.
Child life is an evidence-based profession. This means that child life services – whether they be play-focused or to help a child psychologically prepare for treatment – are backed by research.
Child life is not a billable service. That means that hospitals are not reimbursed for the care and services provided by child life specialists. CHOC recognizes the value child life brings to the patient and family experience and environment of care and funds their crucial work through donor support and other means.
Technology is a key piece of child life’s work. They use virtual reality (VR) headsets, iPads, apps, and CHOC’s in-house radio and broadcasting station Seacrest Studios, to serve patients and families.
Child life offers an abundance of programs for patients, siblings and families. These include everything from medical clowning in partnership with Healthy Humor; Turtle Talk an interactive and entertaining show created by The Disneyland Resort; specialized therapeutic programs including music, art and pet therapy; grief support groups and more.
CHOC’s child life team is big! The team is comprised of 50 people across two campuses. This mighty brigade includes child life specialists, music therapists, a special programs coordinator who coordinates visits and events, school teachers, a clinical education coordinator, an AYA program coordinator, activity specialists and a media programs coordinator.
Child life specialists love celebrations. They regularly help patients and families in the hospital celebrate milestones like birthdays, holidays, graduations, prom, last chemo treatments, weddings and more.
For parents of children who need specialty care on top of their typical visits with pediatricians, CHOC’s growing Primary Care Network offers seamless integration with more than 30 specialty areas represented by CHOC’s mighty brigade of pediatric specialists.
Lea, age 4, has seen a CHOC specialist since before she was born. Lea was diagnosed in utero with hydronephrosis – a treatable condition in which urine gets trapped in the kidney and drains slower than it should into the bladder. A routine ultrasound flagged fluid in Lea’s kidney, and her mom was referred to CHOC’s urology program for a fetal consultation.
Dee Dee, Lea’s mom and a longtime CHOC employee, knew her daughter was in good hands.
“The urologist explained everything in a way that was easy to understand,” Dee Dee recalls. “I was comforted knowing that this condition was common, my daughter would be OK, and that they would continue to monitor her and manage the condition after she was born.”
Dee Dee chose to deliver at St. Joseph Hospital in Orange for its proximity to CHOC. Doctors weren’t concerned that Lea’s hydronephrosis would cause her any immediate harm, but it gave the first-time mom peace of mind knowing that CHOC was right across the street.
Specialty care with CHOC’s urology program
Lea returned to CHOC’s urology program after she was born for additional testing and monitoring.
Urologists confirmed the prenatal diagnosis and also diagnosed Lea with vesicoureteral reflux or VUR, where urine flows backward. Lea’s VUR is due to wide ureters – tubes located between the bladder and kidney, and essential to proper urine flow – and valves that are too small to efficiently direct urine flow.
Some children with VUR grow out of it without the need for medical intervention. This is less common in children with higher grade openings between the kidney and bladder, as is Lea’s case. Doctors explained to Dee Dee and her husband Pat that over time, VUR can lead to infections in the kidneys. Eventually, a high number of these possible infections can lead to kidney damage.
“We realized that if we were going to need specialty care for our daughter, we wanted a pediatrician in the CHOC network to fit into that puzzle,” Dee Dee says. “CHOC is the best partner in caring for our child.”
Lea has remained under the care of CHOC urologists, who continue to monitor her VUR. This has included two voiding cystourethrograms (VCUG). With this test, doctors insert a catheter and dye to fill Lea’s bladder, then take X-rays of fluid flowing in real time. Tests of any kind can be stressful for young kids, so child life specialists from CHOC’s Cherese Mari Laulhere Child Life Department have been present for each of these tests with Lea. Child life specialists are experts in normalizing the hospital environment for kids, but by being an extra source of comfort, they often put parents at ease, too.
“Child life has been amazing with Lea,” Dee Dee recalls. “During one VCUG, the child life specialist asked about Lea’s favorite song. At the time, it was “Wheels on the Bus” so that’s what she sang with Lea. I joined in the song, and before I knew it, every single clinician in the room was signing along to “Wheels on the Bus.” I remember thinking that even though the radiologist was so smart and so focused on performing the test, he was not above singing this song. He knew that is what my daughter needed in that moment to feel comfortable.”
Shortly after Lea’s first birthday, she underwent a procedure called a Deflux injection, where, under anesthesia, doctors injected a protein or ureter material to make the wall of Lea’s ureters thicker, hoping to close the gap and ensure proper urine flow, helping to continue avoiding UTIs.
Lea’s care team – including her parents – remain on high alert for a urinary tract infection or UTI, as a high number of these can contribute to kidney damage. Lea took preventive antibiotics until she was potty trained to help avoid UTIs.
As part of CHOC’s growing health system, pediatricians in CHOC’s Primary Care Network not only have full access to any medical records from their patients’ specialty care visits, they can also see notes from recent visits to other providers, meaning they have the latest information on their patients’ medical history.
This coordination was especially beneficial for Lea and her parents on a recent weekend when Lea had a suspected UTI. Although common in children, with Lea’s VUR, potential UTIs are cause for concern.
Thanks to Saturday morning hours at Lea’s pediatrician’s office, they were able to get a last-minute appointment.
“With Lea’s condition being relatively rare, I’m used to explaining it to people,” Dee Dee says. “But when we saw Dr. Ball, he already knew her medical history and was very familiar with her condition. We typically see Dr. Williamson in that office, and she is well-versed in Lea’s health, but seeing Dr. Ball was seamless. It was such a relief not to have to explain anything to a new-to-us provider.”
A urine sample is a routine and necessary part of testing for UTI. These can be hard for children and parents alike, but Dee Dee felt grateful that Dr. Ball and his staff were patient with Lea.
“The whole staff was really patient with us, even though we were the last appointment of the day. They just kept coming in and checking on us to see how we were doing,” Dee Dee says. “The office also felt very safe during COVID-19; everyone was masked, and everything was clean.”
Ultimately, Dee Dee and Lea headed home with instructions to drink more fluids to help Lea produce a urine sample, and a plan to head to CHOC’s urgent care in Orange when Lea was ready. During this time, Dee Dee called CHOC’s urology team to confirm their course of action.
“I called the urologist on call, and even though it wasn’t Dr. Stephany, who we typically see and who is most familiar with Lea, the doctor who called us back had already looked at Lea’s chart and read Dr. Ball’s notes from that morning,” Dee Dee says. “He reassured us we were doing the right thing and validated my choice to bring her to CHOC’s urgent care.”
Lea continued drinking fluids to help produce a urine sample. When Dee Dee and Lea got to CHOC’s urgent care, they saw Dr. Vivi Tran, a CHOC pediatrician. Dr. Tran likewise could see Lea’s complete medical history and Dr. Ball’s notes from that morning, as well.
“I didn’t need to explain a thing,” Dee Dee recalls. “Dr. Tran was already up to speed, and that was such a weight off my shoulders.”
CHOC pediatricians know kids, and they know that rushing a child – especially to do something like produce a urine sample – will often have the opposite effect. Dr. Tran checked in with Dee Dee and Lea periodically, and even brought Lea an apple juice to help her produce a urine sample.
“CHOC made this as stress-free as possible for Lea and me. We were there for three hours trying to get Lea to produce a urine sample, and never once did I feel rushed,” Dee Dee recalls.
Lea’s UTI test was ultimately negative, and she had a regularly scheduled appointment with her urologist the next week.
“The seamless coordination of care between Lea’s pediatrician’s office, her specialist and urgent care was unmatched. We could never find that anywhere else. I didn’t have to bring anyone up to speed on what was happening or my daughter’s medical history. They had access to her records and the latest information on her case,” Dee Dee says of her daughter’s experience. “I also know our positive experience wasn’t just because I’m a CHOC employee; everyone receives a high level of care.”
Since joining CHOC’s marketing department in 2013, Dee Dee has had a firsthand look at CHOC’s patient- and family-centered care and has worked closely with a number of CHOC specialists. This recent experience with her daughter gave her a greater understanding of and appreciation for CHOC’s system of care.
“We write about various conditions every day and provide education on CHOC’s coordinated system of care. I already knew these things were true because of my job, but then I experienced it myself as a mom and I truly understood how beneficial these things are,” Dee Dee says. “It seems like the scariest thing in the world, to have a child who needs CHOC’s care, but it’s actually the most comforting thing.”
Practicing physical distancing and being away from school, sports and friends can be difficult for families. During this time, it’s important to offer children and teens and abundance of opportunities for play and to spend meaningful time together.
Daya Tamayo grabbed the electric clippers and prepared to go to town.
“Could you remove the white hair too?” joked Jaime Serna, a CHOC staff member.
Daya beamed as she began to give a buzz cut to Jaime, her close confidant and a patient engagement coach and educator in nursing administration at CHOC.
Jaime was making good on a promise he made to Daya over a year ago, when Daya was diagnosed with stage-four rhabdomyosarcoma, a rare type of cancer that forms in soft tissue.
“Daya, when you get bald, I’m going to get bald with you,” Jaime told her at the time.
Jaime, a longtime CHOC employee, is beloved by many CHOC patients thanks to his years as a phlebotomist who could make blood draws less painful and scary.
Not wanting to wait to lose her hair, Daya cut her own long black hair before starting chemotherapy treatment. After she completed her first round, Daya danced on her bed.
“I’m a warrior!” she shouted.
A brief trip home
After rounds of chemotherapy and radiation following her initial diagnosis, Daya and her mother, Deisy Saldana, her brother Alan, and other relatives who for months had rotated visiting her at CHOC and staying at the Ronald McDonald House returned to their home in Catalina.
Daya, an athletic seventh grader with a love for swimming, basketball and baseball, felt well enough to enjoy ziplining and other outdoor and ocean activities.
Then, her conditioned worsened. Her cancer spread throughout her body, including to her brain.
Daya returned to CHOC.
Making good on a promise
As Daya approached the end of her life, she never forgot the promise Jaime made to her, and she made fulfilling it one of her last wishes.
Jaime recently let Daya, 12, shave his head inside her hospital room.
Daya’s support system
A few days after his haircut, Jaime, sporting a salt-and-pepper buzz cut, visited Daya.
Daya briefly opened her eyes and gave Jaime a thumbs up before closing her eyes again.
Then into the room walked Clare Loper, a child life specialist in CHOC’s Cherese Mari Laulhere Child Life Department, a group that works to normalize the hospitalize environment for children and families. Child life specialists can also offer new diagnosis education and support, and ever since Clare provided diagnosis education to Daya when she was first admitted to CHOC, she has supported Daya’s family.
Soon, three other CHOC associates came to visit Daya: Theresa Coronado, oncology care manager assistant; Racquel Rearos, case coordinator; and Noemi Beas, case coordinator assistant.
They shared fun stories about Daya as they viewed dozens of photos plastered throughout the room, including ones of her quinceanera celebration that was held earlier this fall. The ceremony traditionally marks a girl’s coming of age, which in happy times comes when a girl turns 15.
Daya’s 13th birthday is Feb. 18, 2021.
Daya had plans to make YouTube videos about beating cancer to encourage other young patients. She loved to deliver food to them on the oncology floor.
A diehard Dodgers fan, word about Daya’s cancer battle reached the team’s dugout during the recent World Series. Dodger player Cody Bellinger texted Daya a special video greeting.
“Hi Daya, it’s Cody,” the star player said. “Everyone in the Dodgers clubhouse is rooting for you. We’re going to do everything we can to win this World Series for you, so stay strong, and we’re all rooting for you.”
The Dodgers made good on their promise to Daya, too.
Deisy said she and Daya talked about her last wishes. One of them was not returning home.
“I want to stay with my family at CHOC,” Daya had declared.
Another was cutting Jaime’s hair.
Another was Daya’s desire to be cremated.
“She wanted me to take her in a locket everywhere I go,” Deisy says.
After a long and heroic battle with cancer, Daya passed away in November.
“I knew it was going to happen,” Deisy said of losing Daya. “But I just don’t want to accept it. I don’t ever want to accept it.”
Theresa said Daya has made a big difference in her life. As a last message to Daya, she added:
“You are a warrior, a true definition of a fighter. You are the strongest and toughest girl I know. I love you to pieces.”
Jaime said Daya had the power to instantly lighten the mood in her hospital room.
“She never gave up,” he said. “No matter what happened to her, she didn’t show pain. She taught us all to be strong and not to be afraid.”
We understand how important it is to visit loved ones during a hospitalization, especially a child’s. However, for the safety of our patients, families, physicians and staff, CHOC strictly enforces limited visitation on our campus during times such as flu season and the COVID-19 pandemic.
Our pediatric psychologists and child life specialists have teamed up to offer families the following creative ways to stay connected throughout a hospitalization:
Phone calls and video chats are often the easiest ways to stay in touch with a hospitalized loved one. If a patient does not have access to a smart device, the Cherese Mari Laulhere Child Life Department can make special arrangements.
Explore new apps to stay in touch – does the child or teen in your life love using WhatsApp, Messenger, Google Hangouts, Snapchat or other apps? Download their favorite app as an easy way to stay in touch their preferred way.
Use the voice recorder on your smartphone to sing your child’s favorite song, read them a short story, or tell them goodnight or good morning. The parent or guardian who is at the child’s bedside can play the messages on your behalf.
Write to each other in a journal. The child can write a note or draw a picture, and then send the notebook home with the visiting caregiver. Any family members who are at home and unable to visit the hospital can write messages or draw photos in the notebook, and the visiting caregiver can bring it back to the hospital for the child to read.
Assign clinical family liaisons to update non-visiting caregivers or other family members on the patient’s status or call them during rounding.
Family members who cannot be at a patient’s bedside may be comforted by visualizing the space their loved one is in. CHOC has a library of experience videos that can help family members – whether preparing for a visit themselves or not – learn more about CHOC.
Setting up a CaringBridge page can help families share updates and photos with loved ones near and far.
Use Zoom’s whiteboard feature to draw pictures together, write a story or play Pictionary.
Use an online game sharing app to play your favorite board game together online. If a child doesn’t have a laptop available during their hospital stay, their child life specialist can help secure one to borrow.
Pick a craft – anything from painting to decorating a coaster – that all family members can do together via Zoom or video call.
Create a family gratitude journal, where each family member picks three things that they are grateful for every day. Share them with each other via a notebook that is carried from home to the hospital by the visiting caregiver, or with a free journaling app.
Do a scavenger hunt via video chat with different family members. You can each try to find certain items in your spaces that start with a specific letter.
Create coping boxes that kids can use when they feel sad or worried. Some items to consider adding are bubbles, coloring pages, Play-Doh and fidget spinners.
Play a virtual game of Simon Says.
Have family story time through video chat. You can do this at bedtime so family members not at the child’s bedside can participate in their bedtime routine.
Have a virtual, interactive watch party for your favorite TV show or movie using Netflix Party or Disney+’s GroupWatch. These services allow you to synchronize your show or movie with friends and family, and chat while you’re watching.
Create and send a personalized Build-A-Bear with a special “get well soon” message.
Create virtual rooms together using Google Slides. Add furniture, people and links to different activities or games. There are many helpful and free tutorials online for creating these rooms.
Create video diaries to keep each other updated on what you’re doing throughout the day – it could be something exciting or mundane. Share with each other via social media or use a free app to string together your video snippets throughout the day. There are also free apps that will allow you to create a calendar showing a photo of something fun or unique you did each day.