From patient to advocate: Trinity’s journey with cleft lip and palate

After a normal pregnancy and healthy delivery, Trinity was diagnosed at birth with cleft lip and palate, birth defects that occur when a baby’s lip or mouth do not form properly during pregnancy.

Her parents, Krisha and Jason, didn’t know much about these conditions at the time. They were quickly referred to the CHOC Children’s Cleft and Craniofacial Program, which includes a team of multidisciplinary specialists including plastic surgeons, otolaryngologists (ear, nose and throat), dentists, and more. Krisha and Jason relied on their CHOC team for help, education and resources regarding their daughter’s diagnosis.

Trinity underwent her first in a long series of surgeries when she was just 10 weeks old. Although it’s been a decade since that day, her parents still remember waiting for Trinity to emerge from that first surgery.

“In that first surgery, minutes felt like hours,” says Krisha. “Having to give up your 10-week-old baby knowing that they’re going to look different when they come out—it was a scary situation.”

Although Krisha and Jason knew their little girl was in good hands at CHOC, they were understandably worried about her surgery. What helped was memories of Jason’s own experience as a CHOC patient when he was a child.

“It’s been over 30 years since I was a CHOC patient, but I still remember that CHOC took really good care of me,” he says. “Even then, I remember CHOC being a really neat place. It’s so family-oriented.”

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Trinity at CHOC Children’s Hospital, before a surgery.

Over the last ten years, Trinity has returned to CHOC for more surgeries, check-ups and other care. This has included surgeries to improve the appearance and function of her lip and palate, multiple ear tube procedures, and a palate expander. She’s also undergone multiple bone grafts where bone is taken from her hip and grafted into her mouth and gum line. She has had multiple ear tube procedures, a palate expanded etc. Future surgeries include jaw surgery, nasal surgery, orthodontia, and potentially additional lip and palate repairs.

“People assume that cleft lip and palate is just a cosmetic deformity, but it’s so much more than that,” Krisha says. “Trinity sees a wide variety of specialists, including a craniofacial plastic surgeon, a craniofacial orthodontist, an otolaryngologist (ENT), a speech pathologist, an audiologist, and more.”

Becoming part of her own care team

As Trinity has gotten older, she’s taken a more active role in her care—especially when interacting with Dr. Daniel Jaffurs, medical director of plastic surgery and craniofacial services at CHOC.

“Dr. Jaffurs acknowledges Trinity first when he walks in the room, before he speaks to us as parents. He explains everything on her terms, and then he will address us as parents.”

This confirms to Krisha that Dr. Jaffurs knows that Trinity is the most important person in the room and has helped foster the bond between doctor and patient.

“Dr. Jaffurs is my favorite doctor,” Trinity says. “He’s really nice. When I was little, I was afraid of doctors, but I’m not afraid anymore.”

A lifelong love of music

Children with cleft lip and palate often have trouble speaking clearly because the structure of their mouth and nasal cavity makes it hard to produce certain sounds. Although Trinity underwent speech therapy when she was younger to normalize her communication abilities, anytime she sang, it always came out clear. She also taught herself to play piano when she was just 8 years old.

“Whenever I have surgery and I don’t feel good right after, I put on music and then I start to feel like my normal self again,” Trinity says.

Always the performer, Trinity also participates in school musicals and dreams of being a professional musician someday.

A budding advocate

Trinity has become an advocate for other craniofacial patients.

“She’s always made her story known,” says Krisha. “She’s had situations in school where other kids ask questions about how she looks, and instead of getting mad, she brings in her baby book and says, ‘I’m going to tell you why I’m different.’”

Before performing a song at an annual picnic that brings together craniofacial patients and families, she gave an impromptu speech about confidence to the 400-person crowd.

“If someone makes fun of you because of how you look, get back up again and don’t let them bother you anymore,” she told the crowd. “You are special, and you were born exactly who you were supposed to be.”

This message was in line with what her parents have been telling her since she was born.

“I never wanted her to forget where she came from,” Krisha says. “Even though she was undergoing all these surgeries, I wanted her to know that she was beautiful and perfect the way she was born.”

Trinity continues to increase craniofacial awareness in her community. She often shares her story with her classmates and once even spoke to her school board about her surgeries.

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Trinity with her family.

Trinity and her family find value in connecting with other craniofacial families. Their decade-long relationship with CHOC’s craniofacial team has given them an inside look on how CHOC and the department have evolved.

“The craniofacial program at CHOC has grown so much in the past 10 years. It’s incredible to see what they can do,” says Krisha. “This program has changed our lives for the better.”

The importance of community support

Support from their community means the world to Trinity and her family.

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Trinity paints a picture frame in a playroom at CHOC Children’s while recovering from surgery.

“Donors have a big role. They help CHOC be up to date on everything,” says Jason. “CHOC is constantly evolving and in terms of the latest technology and procedures. It’s neat to see everybody coming together to make all this accessible for families like us.”

To Trinity’s family, CHOC is an essential part of the community.

“It changes families’ lives,” says Krisha. “It definitely does. It changed our lives.”

Trinity plans to keep on singing, inspiring others and returning to CHOC to continue her treatments.

“Hands down, CHOC makes everything better,” she says. “CHOC is the friend you never knew you had.”

Learn more about CHOC's Cleft and Craniofacial Program

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A years-long search for a diagnosis: Colton’s story

Ever since six-year-old Colton Pena was a baby, he got sick more than other kids. His parents Josh and Devon knew Colton had low immunoglobin levels and was immune-compromised, but they were determined to find more answers.

“I encourage all parents to advocate for their children,” Devon says. “If you believe there is an issue with your child, go with your gut.”

When the Pena family relocated to Orange County, Colton got horrible mouth sores. His new pediatrician ordered blood work that showed Colton was severely neutropenic. This meant that he had extremely low levels of neutrophil, a version of white blood cells, which help the body fight off infection.

His pediatrician referred him to CHOC Children’s team of pediatric hematology experts. Under the care of pediatric hematologists Dr. Loan Hsieh and Dr. David Buchbinder, Colton underwent a bone marrow biopsy to rule out leukemia, but his team still wasn’t sure why his neutrophil counts were so low.

Over the next three years, Colton’s care team worked diligently to find a diagnosis, and ultimately, a treatment plan. That time was filled with multiple bone marrow biopsies and hospitalizations for high fevers. Devon, a licensed vocational nurse, quit her job as a school nurse to care for Colton full-time.

“CHOC’s hematology team was been so great about trying to find out what was going on with Colton. There were a lot of minds working together to figure out why his immune levels would be low, then level out, then go back down,” Devon says.

Josh, a police officer, likens the doctors’ work to detectives working to find a break in a complicated investigation.

“We got to the point where we just wanted to know if it was good news or bad news. That way, we would know how to help him,” Josh says.

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Colton during a stay at CHOC Children’s Hospital.

Colton should be in first grade, but due to health issues he missed so much school last year that he is repeating kindergarten.

“Last year, Colton was at CHOC more than he was home,” says Devon. “We came weekly to check his neutrophil count and for other appointments, anytime he spiked a low-grade fever we had to visit the Emergency Department to check his neutrophil, and he was hospitalized more than five times.”

Colton struggled emotionally with his illness, so his hematology team referred him to CHOC psychologist Dr. Cindy Kim.

“I could see his anger related to his illness, and he was having a hard time coping with the recent death of his grandfather,” Devon recalls. “I felt especially with my medical background it was important for him to talk about it. Sometimes it’s hard to talk about your feelings with a parent.”

For a few months, Colton and Devon met weekly with Dr. Kim as he learned to work through the anger and emotions.

Colton tried bone marrow stimulant injections to try and help his body make more neutrophil. When that didn’t work, his hematology team suggested genetic testing.

The results identified a rare variant mutation in Colton’s genes. This particular mutation is a recent discovery and more research is needed to fully understand its scope.

Armed with the results of Colton’s genetic testing, Dr. Buchbinder started Colton on infusions of immunoglobin—a protein in the body that plays a role in supporting the immune system. Immunoglobulin therapy is used to decrease symptoms of a number of autoimmune disorders.

Ever since starting these infusions, Colton has been like a different kid, Devon says. He’s only been hospitalized once, he’s able to attend school regularly, and he only needs to visit CHOC monthly for lab work. Since his immune system is healthier, his parents feel more comfortable letting him play outside, his favorite hobby.

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Now that he is much healthier, his parents feel more comfortable letting him play outside, his favorite hobby.

Dr. Buchbinder gave Colton’s family the option of coming to CHOC monthly for infusions or doing them weekly at home. Given Devon’s background in nursing and her history of caring for children with autoimmune disorders who needed similar injections, the family opted for at-home infusions. A home health nurse provided training, and now Devon administers Colton’s infusions every Sunday afternoon.

“Colton’s whole motto is ‘Be brave, show courage.’ His bravery has made my journey as a parent and caregiver so much easier. I’ve never had to deal with his fear or worry,” Devon says.

Colton, pictured here with dad Josh, has a motto: Be brave, show courage.

Throughout his journey, Colton has become an advocate for giving back to other kids at CHOC. He organized several fundraisers to purchase bright, lively hospital gowns so that other patients could wear their favorite theme or animal. He’s even participated in magic shows to spark joy among other patients.

Last Christmas, Colton told his parents he didn’t want to ask for too many gifts, so that he could donate more toys to kids at CHOC.

“Colton has the kindest heart. He loves helping other kids who are sick and helping make their day,” says Devon. “Giving back has been something that has redirected his own feelings into something positive.”

Josh’s colleagues at Huntington Beach Police Department, inspired by Colton’s bravery and commitment to help others, have supported his fundraising efforts. Officers organized fundraisers to help Colton purchase more unique hospital gowns and organized a toy drive to benefit CHOC patients hospitalized over the holiday season.

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Living with juvenile arthritis: Mackenzie’s story

The first 11 months of Mackenzie’s life were like most other children. But as she was on the cusp of learning to walk, her parents Danielle and Victor noticed that she used her baby walker with a bit of a gimp.

They took her to urgent care, where a doctor ordered X-rays and noticed she was favoring her left leg. He suspected a toddler fracture—a hairline crack in the shin bone, about which not a lot can be done, and common among wobbly toddlers—and sent them home.

Journey towards a surprise diagnosis

Wanting more peace of mind, Danielle and Victor followed up with Mac’s pediatrician who referred them to an orthopedist, a doctor who specializes in bones, joints and nerves. That specialist was able to rule out the toddler fracture, but suspected Mac’s issue may be joint-related, and referred her to a pediatric rheumatologist, a doctor who specializes in the swelling and pain in muscles and joints.

“As a parent, you are your child’s advocate,” says Danielle. “Even with the right team and resources, there is still effort on the parent’s part.”

By that time, Mac had lost range of motion and could no longer straighten her leg.

“It’s terrifying when your kid has a health issue, especially when they are too young to tell you what hurts, or what’s wrong,” Danielle says.

Thankfully, the pediatric rheumatologist they met with at CHOC was able to provide a definitive diagnosis, and quickly. After blood work and a physical examination, Mac was diagnosed with an oligoarticular juvenile idiopathic arthritis (JIA). This is the most common form of juvenile arthritis, and usually affects toddlers’ knees. JIA is an inflammatory condition that develops when the immune system’s normal regulations don’t work perfectly, and inflammation occurs in the tissues surrounding joints. This results in swelling, stiffness, pain and limited movement.

“When we got to CHOC, we were so worried, but the doctor pointed us in the right direction and alleviated our fears,” Danielle recalls.

Although arthritis affects nearly 300,000 kids and teens in the U.S., it’s commonly thought of as an ailment that only affects grown-ups.

“At first, I didn’t tell anyone that Mac had arthritis. It wasn’t something that I put out there. It wasn’t that I was embarrassed, but I was scared and didn’t love talking about it,” Danielle recalls. “But then I had an epiphany—I wasn’t going to help her or anyone else by not talking about it. I needed to raise awareness that it affects infants and kids, too.”

Mac, 14 months old at that point, underwent a corticosteroid injection. These injections are an effective treatment for oligoarticular arthritis, and work by decreasing inflammation in the joint into which it is injected. Because she was so young—and fidgety like most kids her age— she was sedated for the injection. She also underwent serial casting, a process where clinicians straighten the knee while a child’s cast is drying. The temporary cast is removed after a few days and then a new cast is applied with the knee a bit straighter each time.

toddler-juvenile-arthritis-cast

“Mac has been brave since day one,” Danielle says. “The machine used to cut off her casts was loud, but my kid is afraid of nothing.”

These injections are kept to a minimum to reduce problems that can come with prolonged steroid use, like joint damage.

Juvenile arthritis treatment and remission

JIA often goes into remission, which can last for months, years or even a person’s lifetime. Mac’s JIA went into remission for two years before her parents noticed that she was having trouble walking.

Her original rheumatologist had relocated out of state, so her care was transferred to pediatric rheumatologist Dr. Andrew Shulman.

“We fell in love with Dr. Shulman the first time we met him,” Danielle says. “He calmed our fears. He made us believe we could get through this. He explained things in a way we could understand. I don’t think we could be in better hands.”

Mac and Dr. Shulman hit it off right away. In part, because she loved his signature bow-ties so much.

Three-year-old Mac underwent another steroid injection after her flare-up at age 3. Since her muscles were weak, she also underwent physical therapy to gain back strength. This triggered another two years of remission.

A few months before her sixth birthday, Mac started complaining of pain in her right ankle. Previously, her arthritis had only affected her right knee. This flare-up required two corticosteroid injections in her knee and ankle, which so far have re-induced remission.

“The easier thing about having a 6-year-old with arthritis than a 1-year-old with arthritis is that she is so much more articulate at this age,” Danielle says. “I can ask if she hurts because she fell on the playground at school, and she can help me rule that out as a potential source of pain. Now that she’s older, it’s easier to identify pain as an arthritis flare-up rather than something else.”

When she experiences a rare arthritis flare-up, her first line of dense involves naproxen, an over-the-counter anti-inflammatory drug. If more consistent flare-ups become a reality, or if additional joints start suffering, Mac may need more regular medication, in the form of Humira, a bi-weekly at-home injection that protects against over-active inflammation pathways in the immune system.

“Anytime we have a flare-up or questions, Dr. Shulman is always available to us,” Danielle says. “Having a child in pain is terrifying to a parent, and to have your doctor call you back the same day is nice.”

It’s hard to predict if arthritis in children will go away on its own or become a lifelong ailment.

choc-juvenile-arthritis-patient

“We may have had her last flare-up and she might be fine for the rest of her life. Or, her future could be systemic medication and joint replacements; I have no idea,” Danielle says. “Raising awareness and funds for research and a cure, that’s what makes me feel better about it.”

Mac’s family and friends are now active with the local chapter of the Arthritis Foundation.

Day-to-day life for a child with JIA

Mac’s day-to-day life is much the same as any other six-year-old. She loves swimming lessons, play dates, gymnastics and ballet. She’s also fluent in Mandarin, loves science and math, and is taking Spanish lessons at summer camp.

Her love for staying active is key to her overall health; muscle strength and endurance can help reduce joint pain and fatigue.

“We don’t want Mac to grow up with the stigma that there is something wrong with her,” Danielle says. “We tell her that she can do anything she sets her mind to.”

Maintenance

Mac sees Dr. Shulman every three months for a check-up. She occasionally wakes up feeling stiff, but a special heating pad to warm up her joints helps.

Since children with JIA can experience uveitis, a form of eye inflammation, Mac has regular check-ups with a pediatric ophthalmologist for monitoring.

Even with doctor’s appointments and occasional flare-ups, six-year-old Mac has no fear of doctors or hospitals.

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“The people and environment at CHOC are so inviting. The colors, the calming effects, the videos and books and toys in the waiting rooms—everything makes it easier on the kids, and the parents, too,” Danielle says. “Everyone from the people in Dr. Shulman’s office to the team who draws blood, is amazing. They give Mac toys to distract her from the poke, and that raises her comfort level.”

Mac’s family, based in Orange County, feels lucky to have their care team so close to home.

“Some people have to drive long distances to see a qualified rheumatologist, and we are lucky to have our team so close to home,” Danielle says.

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My journey with scoliosis: Casey’s story

By Casey Kent, CHOC Children’s patient

I was 10 years old when I found out that I had scoliosis. It runs in my family, and my pediatrician had been keeping a close eye on my spine, so I wasn’t too surprised. And at first, it didn’t really influence my day-to-day life.

Growing up, I played a variety of sports and after my diagnosis, I continued moving my body and staying active with tennis, softball and soccer. I eventually fell in love with cheerleading and dance.

After my diagnosis, my pediatrician referred me to Dr. Francois Lalonde, a pediatric orthopaedic surgeon at CHOC. I saw him twice per year to monitor the curve in my spine. It was getting more pronounced, so by the time I got to middle school, I started wearing a scoliosis brace to try to improve the curvature of my spine. Some people must wear their braces all day, but I only had to wear mine at night while I slept. After two years of sleeping with my brace on, Dr. Lalonde determined it hadn’t significantly improved the curve in my spine, so I didn’t have to wear it anymore and we just continued monitoring the curve. I was never embarrassed of this brace, but when friends came over for sleepovers during my middle school years I would have to explain to them what this brace was in my room. So, I was just extra cautious about who I let spend the night at my house.

During this time, I knew the curve was getting worse, but I only had mild discomfort, so I wasn’t in much pain. When I was 16, Dr. Lalonde and his colleague Dr. Afshin Aminian, another pediatric orthopaedic surgeon at CHOC, let me and my parents know that the curve in my spine had progressed to such a point that scoliosis surgery was the only option to correct it.

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Casey with Dr. Aminian after her scoliosis surgery.

I was kind of shocked to hear that I finally needed surgery, but I knew that surgery was going to make me better— the discomfort and spinal curve would go away, and I was ready for that.

We scheduled my scoliosis surgery for a few months later, when I would be on summer vacation, so that I would have more time to recover and wouldn’t have to miss school. I had never been to CHOC Children’s Hospital before, so the hospital setting was scary in my mind. Leading up to my surgery, my parents and I were given a tour, and the staff made sure I knew everywhere that I would be during my stay. That was peace of mind for my parents because they knew what was coming. I had peace of mind knowing a lot of other girls and boys had undergone this surgery before and had good outcomes. I just felt at peace at CHOC, and I knew that everybody wanted the best for me. It wasn’t a scary place at all.

I also knew I was in good hands with Dr. Aminian. He had a very calming presence, and he made me feel good about the decision to have surgery. I was never scared that anything would go wrong because I trusted him. He had done hundreds of these surgeries before, and that helped me feel super safe.

My surgery was a few hours long, and afterwards I was brought to the pediatric intensive care unit (PICU) to recover. I was there for a couple days for observation and pain management, and then I was transferred to the surgical unit for another few days before I was discharged.

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An X-ray of Casey’s spine, before (left) and after (right) scoliosis surgery.

I’d never been in the hospital or had surgery before, so I didn’t know what to expect for my recovery. I thought I would be awake or in pain, or maybe I’d struggle finding things to do and I’d feel bored. But my body was tired from surgery, so I honestly slept most of the time I was in the hospital.

One day on the surgical unit, I was having a hard day, and when another girl recovering from scoliosis surgery heard that, she sent me a flower. It completely cheered me up.

A few things that made my hospital stay more comfortable were bringing my favorite snacks for when I had an appetite and bringing a comfortable blanket from home. Before my surgery, my mom bought a couple pairs of inexpensive workout shorts and cut the lining out; I had something comfortable to wear in the hospital, and not having to deal with the shorts lining made it easier to use the restroom. Because I slept a lot, I kept my hair up in a bun so it wouldn’t get tangled. Although I had brought my smartphone and tablet to keep myself entertained, I found that I didn’t use them as much as I thought I did. I know some other patients who love reading brought books to pass the time. Volunteers would pop in and out of my room from time to time, offering to bring board games, video games or movies, which was nice. Although CHOC was a new environment to me, I felt so comfortable there that I was never scared. All the staff was really amazing, especially my nurses and Dr. Aminian.

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Casey and her dad, during her recovery from scoliosis surgery at CHOC Children’s Hospital.

Since I was in the hospital over the Fourth of July, we decorated my room with patriotic décor to make it feel cozy and homey. That was something I never would have thought to do if my mom hadn’t suggested it, but it made me feel even more comfortable.

Overall, the pain I experienced after surgery was different than I expected. I assumed it would be jolting or constant pain, but it wasn’t like that at all. Everyone goes through recovery differently, but I don’t think the pain was something other people couldn’t handle as well, if theirs was like mine. In the hospital, my pain was well-managed by my care team. At home, it took some time to navigate how to manage my pain, but it wasn’t as scary as I had made it out to be.

When I started my senior year of high school a few months after my surgery, I found a new normal. Although I could no longer tumble or stunt during cheerleading, I stepped into the role of co-captain and found other ways to still participate. It took me a few months to get used to what I call my “new body” and the correction made to my spine, so I didn’t work out for a few months. Now, I’m back to being as active as I was before surgery. I consider fitness a crucial part of my life; I am lucky to have an able body, and I feel my best when I’m active. I chose not to continue cheerleading in college but found that I love kickboxing classes.

These days, I’m studying business at the University of Southern California, and I’d like to pursue a career on the business side of the medical field. If I hadn’t had scoliosis, I wouldn’t have realized that this is what I want to pursue for my career. I want to feel like I’m paying it forward and helping people, even if not directly as a doctor or nurse.

Scoliosis has put a lot of things in perspective for me. Having been through a spinal surgery, I label myself as determined. I’m grateful for my experience. It has helped me become a better person; It has added to my story.

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Walking for a hero: CHOC Walk teams honor lost loved ones

The CHOC Walk in the Park is more than a fundraiser and celebration of healing. For many families, this annual event is a chance to cherish the memory of a child. In solidarity, CHOC has created “Walking for a Hero,” a program to honor the children who have passed away and give their families special hero capes to commemorate the bravery that extended throughout their short but impactful lives.

The cape colors were inspired by Carter Ankeny, a former CHOC patient. One month before his 5th birthday, Carter was diagnosed with acute lymphoblastic leukemia, a rare type of cancer. His family spent much of their time dedicated to Carter’s healing, and CHOC became a home-away-from-home. After years of treatment, Carter’s condition suddenly worsened.

Even on the darkest day of their lives, the Ankenys remained grateful for the support they received from the community they had built within CHOC.

“I remember how many people came to see us on the day he passed,” remembers Carter’s mom, , Jamie.  “Nurses, doctors, volunteers —everyone that we interacted with. They didn’t have to come, but they did. We’re so lucky to have such an incredible hospital so close to us.”

The “Walking for a Hero” program became one of the many ways the Ankenys celebrate Carter and support other families who have experienced loss.

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Carter’s family participate in CHOC Walk in the Park to honor his legacy, raise awareness for childhood cancer, and give back to CHOC.

“All we want to do is share our story,” says Jamie. “We want more people to know Carter’s name and more people to recognize CHOC. We also want to spotlight childhood cancer research, so we won’t have any more outcomes like Carter’s.”

Carter’s dad, Tim, agrees.

“We’re all for anything that keeps his memory alive,” he says.

During this year’s CHOC Walk, thousands of families will walk through the Disneyland® Resort with a purpose: some to encourage, some to remember, all to honor their heroes. And once again, we will walk in memory of Carter and other brave children and honor their memories with “hero capes” as a symbol of unity for the many families walking in memory of a loved one. Through this program, we’ll raise vital support and awareness so that more patients and families in our community can find the healing, hope and comfort they deserve.

Join the “Walking for My Hero” program and get your free hero cape.

Register now

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