Families giving back: Spotlight on BraveOnes Foundation

Rose & Jeff Kunze and Kendra & David Rosales have been longtime friends. They have seen each other through thick and thin, but never imagined having to support one another through the loss of a child.

Rose and Jeff’s son Hendrix  was admitted to CHOC’s neonatal intensive care unit (NICU) when he was born, due to genetic challenges.

BraveOnes family photo
Hendrix and his parents

Though Hendrix faced many health obstacles, it was clear that he was a fighter from the beginning. However, after a brave battle, Hendrix passed away from organ failure due to infantile spasms shortly after his first birthday. After he passed away, test results showed he had a very rare genetic disorder called OTUD5.

Creating a legacy

 What do you do when your best friend loses their child? This was a question Kendra kept asking herself. Both families were searching for a way to honor Hendrix. “You can either choose to be angry, upset and frustrated or you can choose to be grateful,” Kendra recalls. So, spurred by the love and gratitude they felt for Hendrix, the couples banded together to create the BraveOnes Foundation.

BraveOnes team photo
A BraveOnes Foundation team photo, taken before the COVID-19 pandemic.

The group has made it their mission to create childhood joy. The Kunze and Rosales families reflected on what brought hope during their darkest days while Hendrix was undergoing treatment and decided to bring some of that hope and joy to other children and families going through similar experiences. They have focused on two initiatives — funding a new neurology playroom at CHOC Hospital in Orange and providing meaningful meals to families.

 Providing childhood joy even during treatment

 During Hendrix’s short life, CHOC’s Neuroscience Institute — including to the first children’s hospital in California to be named a Level 4 epilepsy center — became his home away from home.

Because of Hendrix’s seizures, he underwent a lot of testing, which limited his ability to leave his hospital bed or room. Telling a growing child they have to stay in bed for extended periods of time can be challenging for clinicians and parents alike, and, can take a toll on families. The Kunze family had longed for a change of scenery for Hendrix, even if it was simply in another room where it would be safe for him to play.

Because of this experience, the BraveOnes Foundation’s first initiative was to fund a new neurology playroom. Through their extensive community and tribe of supporters, they quickly reached their fundraising goal of $120,000 for the specialty playroom. These funds will allow CHOC to expand the current playroom on the neuroscience unit, install wireless electroencephalogram (EEG) monitoring capabilities, offer enhanced sensory play with a tactile wall, install padded floors for added comfort for patients experiencing seizures, and purchase neuro-friendly toys for children of all ages.

“Imagine instead of needing to stay in your room for EEG monitoring, having a portable monitoring unit —you’re plugged into a backpack that allows you to move and continue your testing while also being in a room that has swings and sensory floors,” Kendra says.

Their vision for the playroom — planned in collaboration with CHOC experts — was to provide a space where children are not confined to their beds but can play and regain some of their childhood.

 Hope on a plate

Keenly aware of the struggle families face when they have a child in the hospital, and the sense of normalcy a catered meal can provide, the Meaningful Meals Program within the BraveOnes Foundation was created to provide dinners to families in CHOC’s neuroscience unit on a monthly basis.

Rose recalls a particularly difficult day when Jeff was at CHOC with Hendrix and the sense of relief he felt by receiving a free bagel. “He said, ‘I got a bagel and coffee and I feel like I can conquer the world,’” Rose recalls. “It was as if they had given him hope on a plate.”

Meaningful Meals quickly became a reprieve for families and relieved them of having to leave the hospital floor to get food so they could focus on supporting and making memories with their children. To date, BraveOnes has provided 1,500 meaningful meals to families at CHOC.

Creating joy during a global pandemic

Throughout the COVID-19 pandemic, BraveOnes started providing morale-boosting meals to hundreds of CHOC’s front-line caregivers.

The remodel of the neurology playroom is currently on hold due to the pandemic, but the BraveOnes Foundation still wanted to bring joy and light to children and families at CHOC. Through a generous donation during the holiday season, the group purchased enough Xbox gaming consoles for each patient room on CHOC Hospital’s fifth floor.

Hendrix’s legacy lives on as the BraveOnes Foundation continues to spread childhood joy.

Of her son’s legacy, Rose says, “I don’t ever think of Hendrix as a tragedy, but rather turning the unfortunate things he went through into joy. He showed us that there can be joy after heartbreak.”

Infant head shape problems and helmet therapy: What parents should know

Slight imperfections in a baby’s head are normal after birth, but as babies grow, a misshapen head could be a sign of something else.

Sometimes, helmet therapy can help correct a baby’s misshapen head. We spoke with Dr. Suresh Magge, medical director of neurosurgery at CHOC, to answer some of parents’ most common questions about whether helmet therapy is right for their child.

Dr. Suresh Magge CHOC neurosurgeon

“In the vast majority of infant head shape issues, the baby has what’s known as positional plagiocephaly, also known as deformational molding of the skull. In these cases, we first try conservative measures, such as supervised tummy time while the child is awake. If the head flattening is still significant, a cranial molding helmet is an option to help the cosmetic correction,” Dr. Magge says.

Head flatness due to positional plagiocephaly can occur when a baby spends a significant amount of time lying on one particular side of the head.

“I want to reassure parents that the vast majority of the time, a flat area on their baby’s head is simply a sign of positional plagiocephaly, a condition that can often be corrected with conservative measures, and sometimes helmet therapy as well,” Dr. Magge says.

Of all babies with head shape problems, Dr. Magge adds, a small percentage have a condition called craniosynostosis. In this condition, a child’s skull fuses too early, causing problems with head growth. Learn more about craniosynostosis. In these cases, surgery is necessary to correct the deformity, and a helmet may be used after surgery.

What can parents do to prevent flat spots on their baby’s head?

You should always put your baby to sleep on his or her back. Follow your pediatrician’s advice on supervised tummy time while the baby is awake, which can help your baby strengthen his or her neck muscles and reduce the time spent on their back.

I am concerned about my baby’s head shape. What should I do now?

If you have specific questions about your baby’s head shape, speak to your pediatrician. Your child’s pediatrician will check your baby’s head regularly. If you or your doctor notices any problems with the shape, the doctor will feel your child’s head and take measurements. They can also refer you to a pediatric neurosurgeon for further examination and continued monitoring.

Why is my child being referred to a pediatric neurosurgeon for their head shape?

It can be daunting to hear your pediatrician say they’re referring you to a pediatric neurosurgeon, but it doesn’t have to be. Being referred to a pediatric neurosurgeon doesn’t mean your baby needs brain surgery. Pediatric neurosurgeons are experts in diagnosing, treating and managing conditions related to the heads and spines of babies, kids and teens.

At CHOC, we can assess your baby’s head using different tools, including a special laser scanner, which is eye-safe and radiation-free. You can see a pediatric neurosurgeon and — if needed — a cranial helmet specialist in a single appointment, and we will form a treatment plan with you.

What will my baby’s doctor do about the head shape?

When babies have some flatness on their head, if diagnosed early, doctors will likely try to treat it with conservative measures including supervised tummy time and/or physical therapy. If those measures fail to correct the head shape, it may be time to think about helmet therapy.

Babies 1 to 4 months old are too young for helmets. If a baby 4 to 6 months of age still has flatness after conservative measures have been attempted, helmet therapy may be considered. The older a baby gets, the more their skull has grown and formed, making a helmet slower to work.

Is helmet therapy required?

Helmet therapy for plagiocephaly is always a choice; it’s never mandatory. It can be helpful in the right situation, but it’s not always needed. The head shape does often get better, with or without the use of a helmet.

Helmet therapy is a choice some parents make, along with their child’s doctor, to try to cosmetically improve the shape of a child’s head.

With your pediatrician, or a pediatric neurosurgeon, you can discuss your baby’s specific case and the pros and cons of helmet therapy.

How is torticollis related to plagiocephaly?

Sometimes, babies with develop torticollis, or a stiff neck which causes a head turning preference. This can lead to the baby spending more time on one side of the head, which can cause positional plagiocephaly. Supervised tummy time also helps to strengthen the muscles in a baby’s neck. Your child’s doctor may prescribe physical therapy to help to relax the baby’s neck muscles.

How long will my baby need to wear a helmet?

Your child’s doctor and helmet orthotist will make a recommendation based on your child’s unique case. Most babies who undergo helmet therapy do so for a few months.

Window falls and children: Lauren’s story

With a New Year’s Eve party a few hours away, Ruth Chi sent her 5-year-old daughter, Lauren, upstairs for a quick nap to ensure she’d have the energy needed later to ring in 2018.

Ruth had just turned her attention back to party prep in the kitchen when she heard yelling upstairs. Suddenly, her eldest son ran past her and into the adjacent backyard.

Lauren had fallen from her second-story window and landed on the concrete patio below. Her brother cradled her in his arms.

“I ran outside the screen door and saw my son hugging Lauren, who was on the ground,” Ruth says.

Crying only slightly, Lauren seemed miraculously unharmed. Ruth carried her daughter inside and examined her body from head to toe. She didn’t see any blood or notice any obviously broken bones. Lauren could understand her mother’s instructions, was responsive and could speak.

The only thing amiss that Ruth noticed were faint red marks on the side of Lauren’s body and a small bump on the right side of her head. Not wanting to take a chance, Ruth brought her daughter to closest emergency room despite Lauren’s protests that she might miss the party.

After a few tests and just 20 minutes or so, the team at the hospital prepared the family to be brought by ambulance to CHOC Hospital’s level II pediatric trauma center. Critically injured children from across the region are transported and transferred to CHOC for the pediatric expertise only a children’s hospital can provide. CHOC’s trained trauma team cares for children and their unique physiological, anatomical and emotional needs with protocols and equipment designed for pediatric patients.

At CHOC, Lauren and Ruth were met by a team of experts who performed more tests and scans. Lauren was the 22nd patient to be treated at CHOC that year for having fallen from a window. The following year, CHOC would go on to see 15 such patients, and in 2019, an additional 24 patients. And in the first 10 months of 2020, CHOC has treated 18 patients who tumbled from a window, says Amy Waunch, CHOC’s trauma program manager.

The no. 1 reason why children fall from windows is furniture placed below, Amy says – and that is exactly what happened with Lauren.

With warm weather a near constant in Southern California, Lauren opened her locked bedroom window. The curious 5-year-old climbed atop her bed and pushed her head against the window screen to survey a nearby park.

The window had a safety mechanism in place to prevent it from being opened too wide, but children can slip through gaps any wider than 4 inches, Amy says.

All those factors, combined with Lauren’s size and strength, allowed her to push through the screen and plummet out the window and onto the ground.

The most common injuries resulting from a window fall treated at CHOC are head injuries like skull fractures and intracranial bleeding, followed by extremity fractures, Amy says.

Lauren, however, seemed just fine. She and her mother passed the time waiting for test results by talking and playing games.

But the family received sobering news at about 9 p.m. that night, when Lauren was diagnosed with an epidural hematoma, a type of traumatic brain injury when blood builds up between the outer membrane of the brain and the skull. This can create pressure on the brain’s tissue and can be deadly.

Lauren would need surgery right away, CHOC experts told the family, who quickly agreed. Lauren was taken to the operating room.

After about an hour, Ruth and her husband were reunited with Lauren in the post-anesthesia care unit.

“She responded well when we talked to her,” Ruth recalls.

After a three-day stay at CHOC’s main hospital campus, Lauren and her family headed home.

After several neurosurgery follow-up appointments, Lauren began treatment with pediatric neurologist Dr. Sharief Taraman. Additionally, Lauren underwent neuropsychologic assessment to determine whether the injury affected her cognitive function.

Today, three years later, Lauren is a happy and healthy 8-year-old with no signs that she survived a near fatal accident. In fact, Ruth even needs to remind her fearless daughter to be careful sometimes.

And she’s not stopping with reminders. The furniture has been rearranged in Lauren’s room, and Ruth continues to caution her friends about the dangers of children and window falls.

“Never say never, I tell people,” Ruth says. “I never would have thought this would happen to me or my family or my daughter. It’s almost impossible. Well, it happens.”

Navigating an epilepsy diagnosis and surgery: Geni’s story

Life was proceeding right on schedule for self-described “drama kid” Genevieve Masson. The 16-year-old, who goes by “Geni,” went to class, hung out with friends and spent time rehearsing musical theater at her high school.

“It was really a normal, not-so-exciting life,” she says.

school photo before epilepsy diagnosis
Life looked typical for Geni, pictured here in her eighth grade photo, before her first seizure.

But two years ago, when Geni was 14, something changed. A small lesion that had been in her brain since birth began making itself known. One night, she woke up and couldn’t move. She figured she was caught in a moment of sleep paralysis and didn’t give it too much thought.

Things quickly turned far more serious. A few days later, Geni was feeling tired at school and decided to take a nap in her coach’s office. That’s when she had her first full-on seizure.

Geni has no memory of what happened next, but those around her became alarmed as her body shook uncontrollably. A teacher called 911 and the next thing Geni knew, she was in an emergency room.

An MRI revealed nothing, as did visits to pediatricians. But not only did the seizures continue, they were occurring more often. The more severe ones occurred at night, while less noticeable ones were happening many times a day. Ultimately, she was diagnosed with epilepsy, but she wasn’t receiving the expert care she needed at nearby hospitals.

“I remember the day she had her first seizure. It was December 18,” says Susan Masson, Geni’s mom. “By that January, there were a couple more. It got to be about 15 to 20 a day. We knew we needed to be at CHOC. We needed to be at a place where we could be with an epileptologist.”

The Massons felt lucky to live fairly close to CHOC, home to one of the nation’s premier epilepsy centers for young people. CHOC’s Comprehensive Epilepsy Program was the first in California to be named a Level 4 epilepsy center by the National Association of Epilepsy Centers, the highest level available. That distinction means that CHOC has the professional expertise and facilities to provide the highest level medical and surgical evaluation and treatment for patients with complex epilepsy.

It was at CHOC that the Massons met Dr. Maija-Riikka Steenari. A pediatric neurologist, Dr. Steenari is an epilepsy specialist, also known as an epileptologist.

dr-maija-steenari-epileptologist-choc
Dr. Maija Steenari, pediatric epileptologist at CHOC

“It’s a fascinating field,” Dr. Steenari says of pediatric neurology and epilepsy. “The combination of working with brains and kids together is the best fit for me.”

What exactly is epilepsy? Basically, parts of the brain go haywire and emit unwanted electrical signals that can cause convulsions and seizures of varying strength. As Dr. Steenari describes it, it’s “a clump of brain cells that don’t quite work the way they’re supposed to, or a cluster of cells in the wrong place. They’re really irritable. They’re known to cause trouble.”

Epilepsy can be the result of brain injury, stroke or, in Geni’s case, a slight anomaly that was present since birth.

November is National Epilepsy Awareness Month, a time to remind people that epilepsy is both fairly common — nearly 25% of the population will experience recurring seizures in their lifetime — and it’s often treatable.

Like others diagnosed with epilepsy, Geni’s first option was medication. She was prescribed anti-seizure medicines, but they didn’t work.

Geni undergoes EEG monitoring at CHOC
Geni underwent EEG monitoring at CHOC to measure electrical activity in her brain.

“Medication works about 60 to 70% of the time,” Dr. Steenari says. “But adding more medications doesn’t always work. A second medication only works about 10% of the time. So, can we do something else to help them with their seizures? That’s where surgery comes into play.”

Having seizures meant that Geni was missing a lot of school, would not be able to drive and couldn’t be left alone. But her family and friends rose to the occasion and helped when they could. And Geni did her best to be a regular teenager.

“I was trying to lead a normal life,” she says. “I would still go to rehearsals.”

Geni needed two surgeries, the first one to determine exactly where the problem was. Dr. Joffre Olaya was her pediatric neurosurgeon.

Geni’s hospital room before epilepsy surgery
When Geni spent time at CHOC, her friends made special decorations for her room to show their support and cheer her up.

“We have these grids that we can put on the surface of the brain,” Dr. Steenari says. “We can map where the seizures are coming from within a few millimeters. We could make a very detailed map.”

The lesion was right next to the part of Geni’s brain that controls language. If her surgeon didn’t have an exact spot to operate, she could lose the ability to speak or write. But Geni was willing to take the risk. Each seizure could cause more damage to her brain and Geni wanted them to stop.

“The doctor said each seizure would do damage to my brain,” Geni said. “I don’t like having constant damage to my brain done. If surgery can take me back to where I can’t write or speak well, I was willing to take the chance.”

Geni prepares for surgery
Geni was all smiles leading up to her second epilepsy surgery.

The second surgery came a few weeks later. Doctors successfully removed the lesion, but Geni faced a number of challenges after surgery that her family was told ahead of time were possibilities. Geni lost automatic movement of her right hand, so she couldn’t do with her right hand what other people do without thinking about it. She was 15 at the time, so before surgery, she had long ago mastered writing without thinking about how to shape each letter. After surgery, she knew how letters should look, but she couldn’t make them. She also couldn’t tie her shoes, brush her hair or teeth, button or zip her clothes, or feed herself.  But Geni and her family treated these more like challenges than setbacks, and occupational therapy helped.

welcome home signs epilepsy surgery
To welcome Geni home after epilepsy surgery, her siblings decorated her bedroom.

“A few weeks after surgery, we went to the library and we got some preschool books on how to write. It was quite frustrating, but luckily, my brain still knew how to do it. It just needed to create new pathways. As soon as I did it, it got easier,” Geni says.

workbooks to help regain skills after epilepsy surgery
Preschool workbooks helped Geni re-master writing after epilepsy surgery.

Talking was hard after surgery, too. Geni would know what she wanted to say, but finding the right words took a little more time than it used to.

“Surgery had knocked over her file cabinet of words,” Susan explains of her daughter’s struggles post-surgery, which got better with speech therapy.

Geni’s family was with her every step of the way. It was heart-wrenching for her parents to see their daughter suffer, but they’re proud of how she handled her journey.

“I cry every time I remember how hard this was, and then I laugh at how much Geni thought it was simply annoying what she had to relearn. These kids are fearless little warriors,” Susan says of her daughter. “She’s a bubbly, vibrant, friendly girl. People love her. I don’t think it ever occurred to her that there was another way to manage through this. The limitations of life when you’re living with epilepsy can be staggering, but we didn’t have time to realize them. As soon as it came up, it ended. We got hit by a Mack truck and then it ended.”

Geni and family in 2019 before surgery
Geni and her family on vacation in 2019 before her epilepsy surgery.

Today, Geni has been seizure-free for 14 months. And while her right arm tires easily and she still sometimes has trouble finding the right words to say, someone meeting her for the first time wouldn’t notice.

Geni back on stage after epilepsy surgery
Geni was back on stage a few months after epilepsy surgery.

“I have my driver’s permit and I’m learning how to drive,” Geni says. “That’s where I am right now. I’m working on a project for my film class and also an online play “Clue.”

Geni should continue to improve with time.

“She’s made remarkable recovery,” Dr. Steenari says. “She’ll continue to get better. If we had let those seizures continue, she would have ended up being much worse in the future.”

CHOC neurosurgeon reflects on 2020, community impact

Dr. Joffre Olaya, a CHOC pediatric neurosurgeon, was recently named one of Orange County’s 25 Most Influential by Modern Luxury magazine. In this Q&A, he shares more about what he’s learned from 2020, the privilege of caring for a vulnerable population, and his work with as medical advisory chair for Make-A-Wish Orange County and the Inland Empire.

dr-joffre-olaya-choc-pediatric-neurosurgeon
Dr. Joffre Olaya, a CHOC pediatric neurosurgeon
How would you describe your mission?

As a husband and father, my personal mission is to keep my family safe, healthy and happy. As a pediatric neurosurgeon and physician leader, I want those same essential things for everyone else in the community. I support CHOC’s mission to nurture, advance and protect the health and well-being of children, as well as Make-A-Wish’s mission to create life-changing wishes for children with critical illnesses.

How does your work help the community?

I take pride in working alongside the incredible team of clinicians at CHOC’s Neuroscience Institute. Every day, we have the privilege of caring for the most vulnerable population. Shouldering this responsibility propels us to deliver the best possible care to our patients facing neurological disorders. I’m humbled that parents entrust us every day with their children’s medical care. I’m excited about the leading-edge technology at our fingertips making pediatric neurosurgical procedures safer and less invasive.

I also value my role as medical advisory chair for Make-A-Wish Orange County and the Inland Empire. From treatment to making a wish come true, I am involved in every step of a child’s journey inspiring hope. I’m a firm believer in the mind-body benefits of a wish — it truly brings a renewed energy to a child and is a critical part of their healing process.

What do you hope the world learns from these challenging times?

I hope we all realize how resilient we truly are as a community. Medical providers have quickly adapted to new guidelines amid a pandemic to continue providing safe, quality care for patients. Parents and caregivers have taken on additional responsibilities while trying to keep their families safe. Our community is learning to juggle even more than we already were.

What is your 2020 motto?

Appreciate the little things. Our lives have changed from having the freedom and safety of going anywhere, seeing anyone and doing anything. Now, for everyone’s safety, we go only where necessary, limit social interaction, — even from family, — and restrict our activities to keep our community healthy. I have learned to “stop and smell the roses.” I appreciate Sunday breakfast with my kids, a morning walk with my wife before work, the beauty of nature during those walks, and the refreshed feeling after getting a good night’s sleep.

What do you recommend to those that want to follow in your footsteps?

Set a goal, make a plan, find mentors and work hard to achieve your dream. Having grown up in poverty, I never would have imagined doing what I get to do today as a pediatric neurosurgeon. I love what I do and couldn’t imagine doing anything else. I have the opportunity to help others on a daily basis. I believe that devoting my life to helping others is the most rewarding thing I can do with my life.

What has been your silver lining this year?

The pandemic has forced us as a society to slow down. Personally, this has given me the opportunity to prioritize what is truly important. I have focused on spending more time with my family and taking care of my own health. Having limited travel options, I have truly enjoyed spending more time outdoors and hiking locally.

What does the world need more of now?

Hope. It is a scary time right now with people feeling threatened with their health and personal safety. After the realization of the pandemic, society has learned that our sense of reality can change in an instant and things are uncertain. Working at CHOC and with Make-A-Wish I have learned to appreciate how much hope can improve the outcome of a person’s life.