The moving way CHOC supports families of pediatric organ donors

Dozens of staff lined the hallway making the route from CHOC Children’s Hospital’s pediatric intensive care unit to its surgical center, offering silent support as a hospital bed came down the aisle.

A family followed alongside the bed, preparing to give the child it carried a last kiss goodbye before their final act of bravery after a life-ending illness or injury: donating an organ to a stranger in need.  

This somber ceremony is CHOC’s “Walk of Honor,” a practice designed to honor CHOC families’ courageous and selfless decision to donate their child’s organs upon their death.

“Our PICU nurses recognize the pain and loneliness these families feel when leaving the hospital without their loved one and are determined to make their last walk out a dignified one,” says Alisa Brown, the PICU’s nurse manager, who helped launch the practice.

As the anniversary of CHOC’s first Walk of Honor approaches, Alisa will speak later this month at the annual symposium for OneLegacy, a nonprofit organ donation advocacy group based in Southern California that works closely with CHOC.

At the upcoming symposium, Alisa will discuss CHOC’s Walk of Honor and a complementary flag-raising ceremony, and how both have impacted CHOC families and staff alike.

Support leaving the hospital

The flag ceremony bookends the Walk of Honor, ensuring that families are supported both when bringing their child to the operating room and when leaving the hospital to begin a new reality without their child.

After they say their final goodbyes and their child is pronounced deceased, the family is escorted by CHOC’s team outside. There, a distinctive flag is raised to commemorate their life-saving gift. A reading and moment of silence punctuate the ceremony. The family also receives a flag to take home.

The OneLegacy and Donate Life flag flies outside CHOC Children’s Hospital to commemorate a patient’s life-saving gift of organ donation.

“This is our way of ensuring that these families are not walking out of the hospital alone and that they are thanked and honored for their courageous gift before leaving CHOC Children’s Hospital for the last time,” Alisa says.

The flag flies outside the hospital for a week, serving as a reminder to all who pass below of a CHOC family’s ultimate gift.

“When people see that flag outside, it reminds us why we’re here,” Alisa says. “It’s easy to get caught up in what’s going on in our lives, but this puts everything in perspective.”

Easing grief

The PICU’s goal is to provide the opportunity for organ donation to all families whose child may be eligible.

“One organ donor can save five different lives and it’s something so healing for these families,” Alisa says. “It helps with grieving process. It’s just a really powerful thing.”

The Walk of Honor and flag ceremonies are a small way for CHOC to thank and honor these families and their selfless gift.

Ceremonies are held only with a family’s permission, and the CHOC team works to make them as personal as possible. For example, one family’s ceremony included the child’s favorite music.

“For the families, it changes their memory,” Alisa says. “A mom told me, ‘You gave me a positive memory from the worst day of my life.’”

The surprising impact on staff

The ceremonies have had an unexpected impact on CHOC staff as well.

Processions draw staff from all over the hospital campus and from a range of disciplines, including clinicians, dietary workers, environmental services staff and administrative employees.

“After we did the first ceremony, I had 30 emails and texts from colleagues saying thank you for letting them be part of it,” Alisa says. “We did this to honor the families and to thank them for their courageous gift, but it’s turned out to be a huge, impactful thing for the entire organization. It’s made us more cohesive.”

Both CHOC Children’s Hospital and CHOC Children’s at Mission Hospital recently earned silver recognition for their efforts to increase organ, eye, and tissue donor registrations, through the 2019 Workplace Partnership for Life (WPFL) Hospital Organ Donation Campaign.

CHOC Children’s Hospital in Orange and CHOC Children’s at Mission Hospital both earned silver recognition through the WPFL Hospital Organ Donation Campaign.

The WPFL is a national initiative that unites the U.S. Department of Health and Human Services, Health Resources and Services Administration (HRSA), and the organ donation community with workplaces across the nation in spreading the word about the importance of donation.

Learn how to become an organ donor.

Music therapy in a mental health setting

Music therapy has been part of CHOC Children’s specialized therapeutic programming for more than 10 years. The program has grown recently, due to increased awareness of its effectiveness and a rising need among CHOC patients. We sat down with Kevin Budd, a board-certified music therapist in CHOC’s Mental Health Inpatient Center, to discuss the benefits of music therapy in an inpatient psychiatric setting.

Q: What comprises music therapy as a practice?

A: Music therapy is the clinical, evidence-based use of musical interventions to accomplish individualized goals. This occurs within a therapeutic relationship between a credentialed professional who has completed an approved music therapy program and a patient. During music therapy, we address physical, psychological, cognitive and/or social functioning challenges for patients of all ages. Essentially, music is the tool that helps support a patient’s non-musical need.

Q: How does music therapy support clinical goals?

A: A patient’s clinical goal is the starting point for determining which musical intervention will be most effective. In the Center, these goals could include: mood regulation, self-expression, self-esteem, anxiety, interpersonal effectiveness, treatment motivation, positive coping skills and others. There’s no one-size-fits-all treatment when it comes to music therapy and mental health. We might work towards a patient’s goals several different ways, such as through focused music listening, songwriting, song discussion, group instrument playing, music and relaxation, singing and more.

Music therapists rely on assessment, treatment planning and evaluation to determine whether a patient’s current music therapy methods are meeting their needs. Without treatment goals, there could be no effective music therapy.

Q: What is an example of using music therapy to address a clinical goal?

A: If a patient’s clinical goal is to increase identification of positive coping skills, we might work on lyric analysis within the patient’s preferred style of song. We could discuss triggers, resilience and negative life situations in the song. After this discussion, we could rewrite the chorus of the song, including identification of a negative situation and a positive coping skill to help address it. The patients can then be encouraged to share what they created—by singing, spoken word or other creative means.

Within this exercise, not only has the patient used a creative medium to identify a negative situation and how to cope with it; they have also built confidence after completing and sharing their creation, felt more connected with others in the group by being vulnerable and feeling validated, improved their mood and increased their treatment motivation.

Q: What kind of impact have you seen in mental health patients who have participated in music therapy?

A: Sometimes it’s hard for patients to verbalize past trauma or express their struggles. But with music therapy, they can discuss a song that relates to their current situation—whether it is bullying, family problems, hopelessness, anxiety or another stressor. During this process, patients may be able to process and verbalize more, since the lyrics are an easier gateway for expression.

During group ukulele playing, patients who have difficulty with interpersonal relationships can cohesively and successfully play music together in a positive, supportive space without the need to talk. They can work on distress tolerance and problem-solving skills while persevering through a challenging task—and by the end, they have improved self-esteem.

In any setting, music instantly affects our bodies—mentally, physically and behaviorally. It’s amazing how one musical intervention can address multiple goals.

Q: What is unique about music therapy in an inpatient psychiatric facility?

A: Music therapy can look different in the inpatient psychiatric setting than in other areas of the hospital. Within the Center, goals for music therapy are focused on combatting the reasons why a patient is admitted—these could include suicidal ideation, depression, anxiety or other factors keeping a patient from participating in a healthy way in daily life. The goal of the MHIC is to stabilize these patients and provide them with as many resources as possible to cope with their mental health challenges.

Music therapy does just that and provides opportunities for patients to learn, process, practice and discover new skills through tailored music interventions. The MHIC offers opportunities for a diverse group of kids and teens to express themselves in a supportive, safe and validating environment. Individual music therapy sessions are available to patients in the Center who need additional one-on-one support to complement their other treatment.

Q: Why did you want to become a music therapist? Why a mental health setting specifically?

A: I’ve gone through my own mental health challenges throughout my life, and I always found that music validated my journey. Music helped me distract myself and process my feelings. Music met me where I was in the moment and gave me hope. It also gave me a platform to express myself in ways I didn’t know how to otherwise.

When considering career paths, I wanted to find a way to harness the role music had played in my life in a therapeutic way. After receiving my undergraduate degree in music, I developed a special interest where psychology and music intersect—the space where music therapy truly breathes. I pursued my graduate degree in music therapy and then became a board-certified music therapist.

I feel humbled and fulfilled to be able to support kids and teens at CHOC with the tool of music. By creating an authentic therapeutic alliance, I can support them through a harsh and challenging time in their lives. I am thrilled to be on the front lines of the music therapy program at CHOC Children’s, and I look forward to supporting its growth and success in treating pediatric patients.

Learn about Specialized Therapeutic Programs at CHOC

Testicular Cryopreservation bringing hope to CHOC cancer patients

Young male patients undergoing treatment for some cancers or blood disorders at CHOC Children’s have another hope for fertility preservation.

The Hyundai Cancer Institute at CHOC Children’s is the only program on the West Coast offering testicular cryopreservation as an option for young male patients unable to bank sperm but who would like to take steps to preserve future fertility.

Under the program, testicular tissue is biopsied and stored in liquid nitrogen at temperatures close to absolute zero for future use. Recent research indicates these biopsies contain stem cells, leading to the possibility of generating sperm in the future, says Dr. Carol Lin, an oncologist at the Cancer Institute, and Lisa Klimpel, an oncology nurse practitioner.

CHOC was among a group of U.S. and Israeli institutions to participate in an eight-year study wherein a network of centers used standardized protocol and centralized processing and freezing to collect and store biopsies.

In total, 189 patients provided samples. A quarter of each sample was used for research and the rest stored for future use. These patients ranged from ages 5 months to 34, with an average age of about 8.

Recently published in the journal Human Reproduction, the study, of which Klimpel is a co-author, found that centralized processing and freezing of testicular tissue from multiple sites is feasible and could accelerate recruitment.

A generation ago, cancer survivors had few options to have biological children. Today, many solutions exist, however many oncologists, despite these advancements, still don’t discuss fertility preservation with their patients, particularly young patients. 

At CHOC, however, discussions about fertility preservation with cancer patients early into diagnosis and treatment are a matter of course, as the program works to ensure a meaningful survivorship, says Dr. Lin and Klimpel.

Learn more about referring to the Hyundai Cancer Institute.

Flu season roundup: Resources to share with families

With the 2019-2020 flu season already here, it’s important to have some go-to prevention resources on hand for patients and families.

These articles cover prevention, signs and symptoms, and important information about the influenza vaccine.


6 ways to keep your kids safe from the flu
Essential steps families should take to avoid and protect from the virus


14 myths and misconceptions about the flu vaccine
This US News & World Report article explores common myths about the important vaccine

Facts & Tips

How to tell if your child has a cold or the flu
Help parents distinguish between the two despite similar symptoms

Stomach flu vs. influenza
Teach families to spot the key differences between gastroenteritis and influenza

What every parent should know about emergency departments during flu season
Tips for families and patients who face a trip to the ED during a busy flu season

CHOC offers Schroth Method physical therapy treatment for scoliosis

Two CHOC pediatric physical therapists, Ruchi Bagrodia and Adam Shilling, answer questions about the Schroth Method, a physical therapy treatment option for patients with idiopathic scoliosis. The non-invasive approach can improve symptoms and, in some cases, can even prevent the need for surgery. Bagrodia and Shilling are among a limited number of specialists in the nation who are certified in the Schroth Method.

Ruchi Bagrodia and Adam Shilling, Schroth Method-certified physical therapists at CHOC

What do you want referring physicians to know about the Schroth Method?

Schroth is a research-supported, conservative treatment method used for individuals with Adolescent Idiopathic Scoliosis. Treatment is provided by physical therapists who have completed a rigorous nine-day course and obtained a Schroth certification. The goals of Schroth treatment are to improve posture, prevent curve progression, decrease the likelihood for surgery, reduce pain, increase body awareness (proprioception) and strengthen the postural muscles.  

How does Schroth Method differ from traditional physical therapy? What are the benefits?

Traditional physical therapy can be helpful for improving trunk and core strength, range of motion and pain. However, it usually fails to address the three-dimensional changes of the trunk caused by an individual’s unique scoliosis.

With Schroth treatment, each person is guided through specific postural corrections to achieve the most optimal spinal position possible as well as strengthening exercises to maintain this posture during everyday activities. The benefits include improved postural alignment and awareness, a more balanced body position, decreased pain, improved efficiency of breathing and increased trunk and core strength.

Is the Schroth Method a new program?

The Schroth Method was first developed by Katherina Schroth in Germany in the 1920s. In 1968, the Barcelona Scoliosis Physical Therapy School was founded, which follows the original Schroth principles, providing three-dimensional treatment based on breathing and muscle activation. Since then, it has continued to gain attention worldwide due to successful, research-supported outcomes.

Are there certain types or degrees of scoliosis that the Schroth Method is effective for?

A wide range of patients benefit from the Schroth Method. At CHOC, we aim to help patients stop the progression of their curve and avoid surgery. Treatment can also be beneficial for those who have already had surgery to improve strength and body awareness. In addition to looking at curve severity, orthopaedic doctors and Schroth-certified physical therapists will consider the patient’s age and skeletal maturity, as these three factors help indicate likelihood of progression.

What does the Schroth Method entail? Is there a typical course of sessions patients can expect?

The treatment is designed and progressed based on an individual’s specific scoliosis. It involves facilitation techniques for elongation and de-rotation of the spine in different positions, as well as exercises aimed to increase proprioception (body awareness) and strength of postural muscles.

Sessions usually include a brief proprioceptive warm-up followed by postural exercises to promote elongation and de-rotation of the spine in specific areas. Next, the patient is challenged to maintain their newly achieved postural alignment during functional activities and everyday movements, such as getting up off the floor, standing from a chair or climbing stairs.

Most individuals would benefit from attending weekly Schroth Physical Therapy for up to 12 weeks and are also expected to perform a specific home exercise program at least five days per week to achieve best outcomes.

Can the Schroth Method be used in place of traditional physical therapy? Of other scoliosis treatment?

The Schroth Method is specific to treating scoliosis, and not all physical therapists are Schroth Certified. It involves specialized treatment sessions with a physical therapist and supports collaboration with a medical team including the orthopaedic doctor, orthotist and sometimes a psychologist. The Schroth Method is often used in conjunction with bracing when recommended by an orthopaedic doctor. In some cases, it can even prevent the need for spine surgery.

What are the outcomes of Schroth Method treatment? How does it differ from outcomes of other physical therapy methods for scoliosis?

The primary outcome measure for those seeking to avoid surgery is a decrease in Cobb Angle, which is measured on X-rays. Additional outcome measures include self-postural alignment, muscle strength and endurance, balance, shoulder range of motion, height, chest circumference, functional lung volume, pain management and quality of life.

Learn about referrals to CHOC's Orthopaedic Institute