Small Baby Unit Before and After

In observance of Prematurity Awareness Month, meet a few graduates of the Small Baby Unit (SBU) at CHOC Children’s. The only of its kind in Orange County, the SBU focuses on caring for the unique needs of the smallest and sickest babies. This special unit is designed for babies born at less than 28 weeks gestation or who weigh less than 1,000 grams.

moanalani

Moanalani Solomon
Current age: 1
Birthday: July 14, 2015
Gestational age at birth: 28 weeks
Birth weight: 2 pounds, 13 ounces
Personality now: “Moanalani is an extremely happy baby who loves to chat with anyone who will listen.  She can roll over and wants to show that trick off as soon as she’s on the floor. She is feisty and absolutely full of life,” says Noelani, Moanalani’s mother.
Reflections on the journey: “We got to know every family in the unit. We really became such a support group for each other. We exchanged phone numbers and birth dates of all the other babies, and asked ‘How did you get here?’ and ‘What’s your story?’ You become family. You’re here for the same purpose. That’s what we really clung to,” Noelani says.

small baby unit

Lucas Zaragoza
Current age: 1
Birthday: June 16, 2015
Gestational age at birth: 24 weeks
Birth weight: 1 pound, 8 ounce
Personality now: “Lucas is always happy, loveable, mischievous, very alert, and curious,” says Heather, Lucas’ mother.
Reflections on the journey: “The nurses told us we’d be very hands on, take his temperature, change his diaper, hold him. They said, ‘It’s OK, we’ll walk you through it.’ They’re part of our family now. We don’t know we would be without CHOC and the nurses and doctors and everyone who had a hand in Lucas’ care,” Heather says.

small baby unit
Jeremiah Zazueta
Current age: 6
Birthday: March 22, 2010
Gestational age at birth: 25 weeks
Birth weight: 2 pounds, 4 ounces
Personality now: “Jeremiah, known as J.J., is a kindergartner full of life and personality. He is very outgoing and friendly. He enjoys playing T-ball, singing, reading, and playing with Hot Wheels. In other words, he’s a typical active boy,” says Maria, Jeremiah’s mother.
Reflections on the journey: “At that moment, you just want them breathing. The doctor said if he cries when he’s born, that’s a good thing. I heard a whimper like a kitten and that gave me peace. The doctor said he’s a feisty one – he was moving his arms. This one’s a feisty one,” Maria says.

small baby unit

Parker Evans
Current age
: 4
Birthday: Sept. 29, 2012
Gestational age at birth: 23 weeks
Birth weight: 1 pound, 1 ounce
Personality now: “Parker’s battle to survive despite the odds seems to have established a bold defiance of the day-to-day challenges that life presents. Every task, no matter how simple or complex, is something that she routinely and emphatically proclaims, ‘I want to do it all by myself!’ The smallest of her peers and behind in her physical development, Parker seems to be the only one not to notice. She has a zest for life and is intent on taking full advantage of the chance she has been given,” says Kristina, Parker’s mother.
Reflections on the journey: “We ended up falling in love with the Small Baby Unit, the nurses and the consistency. Everyone in that unit made a huge difference,” Kristina says.

small baby unit

Faith and Brayden Kohrs
Current age
: 3
Birthday: Nov. 26, 2012
Gestational age at birth: 24 weeks
Birth weight: Both 1 pound, 10 ounces
Personality now:  “We love their amazing hearts, helpful spirits and beautiful souls. They are truly our two little blessings. The kiddos love to travel. They do really well on road trips. Going out with Grandpa Kohrs on his boat in Lake Havasu is always a blast. Faith loves to dance. Brayden loves blocks and Legos. They both love Mickey Mouse Club House, music and books,” says Marydith, the twins’ mother.
Reflections on the journey: “We love the wonderful, wonderful Small Baby Unit staff. They are the reasons we have our babies today. They are just amazing,” Marydith says.

CHOC Walk in the Park: Meet Team Timmaree

By Debbie Hicks, CHOC Walk in the Park participant 

At 7 years of age, our daughter Timmaree was diagnosed with a rare form of eye cancer called orbital rhabdomyosarcoma. In the process of enduring extensive chemotherapy treatments, she lost her hair, but never lost her faith, smile, resilience, and trust in us as parents to ensure she received the best possible care. We turned to the Hyundai Cancer Institute at CHOC Children’s.

Timmaree bonded with pet therapy dogs during her time at CHOC.
Timmaree bonded with pet therapy dogs during her time at CHOC.

To help pass the time during her lengthy hospital stays, Timmaree enjoyed painting rocks. Her first piece of art was a butterfly. She drew a cancer ribbon and then began doodling around it. She excitedly shouted out, “This is a cancer ribbon butterfly!” Timmaree’s rock painting quickly caught the attention of CHOC doctors, nurses and volunteers, as well as other patients, who lined up outside her room to get a glimpse of her special creations. Timmaree never intended on selling them, but many people made generous donations in hopes she would buy something extra special for herself.

After fighting a tough and courageous battle for nearly two years, Timmaree passed away on Dec. 21, 2008, just eight days after turning 9. She was a hero to thousands of people who had the opportunity to meet her, helping change people’s perspectives about life. Many feel honored they have one of Timmaree’s limited edition painted rocks with her signature.

A selection of Timmaree’s limited edition painted rocks.
A selection of Timmaree’s limited edition painted rocks.

Timmaree is with us in spirit. To celebrate her legacy and to brighten the day for patients, we bring the Team Timmaree Rock Craft Day to CHOC the last Sunday of every month. By hosting garage sales and bake sales, we raise money to provide 250 rock painting kits each month — for a total of 18,000 kits since we started seven years ago. In addition, we have proudly participated in the CHOC Walk in the Park since 2007. Our team, donning t-shirts with Timmaree’s butterfly art, has raised more than $260,000.

The 2016 CHOC Walk marks our team’s 10th anniversary, and we can’t think of a better way to honor Timmaree and CHOC than serving as an ambassador family. CHOC was our “home away from home” for two years, during which time we witnessed inspiring miracles and courageous battles. For that reason and so many others, we look forward to joining thousands of walkers at the Disneyland Resort on Oct. 30, 2016. Together, we’ll take steps in support of CHOC and the children and families they serve.

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Son’s Epilepsy Journey Inspires Mom to Help Others

The spread inside a conference room in CHOC Children’s neuroscience unit would be a welcomed sight for any parent: a box of glistening bagels, jugs of steaming coffee, and a warm smile from Kathy Lear.

Whether it’s by offering nourishment or a kind word of encouragement, Kathy stands ready to help a fellow parent of a child contending with epilepsy or other complications.

“We’re trying to do these breakfasts once a week,” she says. “It’s nice to help out.”

After all, it’s a journey that Kathy’s intimately familiar with.

After her son Matthew’s typical birth and toddlerhood, signs that something was amiss appeared in kindergarten. Suddenly, Matthew would start ignoring his parents. Thinking it odd, they made an appointment with the pediatrician.

But before the appointment rolled around, Matthew’s school called one afternoon. Administrators were concerned that he had experienced an absence seizure – a type wherein someone suddenly stares off into space.

At CHOC, an electroencephalogram confirmed that Matthew was indeed d having seizures. He was diagnosed with epilepsy on Halloween 2008, just days before his sixth birthday.

Matthew began care under Dr. Mary Zupanc, director of CHOC’s pediatric comprehensive epilepsy program. The years that followed would be marked by a series of attempts to control Matthew’s seizures, including antiepileptic medication, a special diet and two epilepsy surgeries.

The epilepsy surgeries were palliative procedures, which would partially control the seizures, but not cure the epilepsy or stop all of the seizures. Inevitably, the seizures, although less frequent and less severe, would start again.

Ultimately, Dr. Zupanc recommended implantation of a new type of vagus nerve stimulation device, which sends electrical signals to Matthew’s brain to stop the seizures. Implanted by CHOC neurosurgeon Dr. Joffre Olaya, the device has brought relief to Matthew and his family.

“It disrupts any seizures that might be starting,” Kathy says. “It’s caused a dramatic increase in his ability to respond to us. It has made just a world of difference.”

epilepsy

Matthew now has quarterly visits to the hospital. Now 13, Matthew is doing well, attending special education classes in middle school, and participating in several sports through a recreational league.

“He’ll never be off his medication, but we do hope that we might have seizure freedom again,” Kathy says. “He’ll never not have to deal with epilepsy.”

Between his surgeries, seizure monitoring and other visits, Matthew’s time in the hospital totaled at least six months, Kathy estimated. And without the support of their family, friends and community, the journey would have been nearly impossible for the Lear family, Kathy says.

“We as a family couldn’t have done it without the support of our family and friends,” she says. “It really does take a village. Between bringing us meals, visiting in the hospital, coming back and forth to sports practices – just little things like that really helped.”

That support network has also helped give Kathy the time to make it a priority to help others who are also dealing with epilepsy.

She’s a parent representative on one of CHOC’s clinical practice councils, which help evaluate and improve patient care. Kathy also serves on CHOC’s Family Advisory Council, a diverse group of adult family members who meet regularly to provide input on decisions, initiatives and discussions.

That role brought her to the recent breakfast in the neuroscience unit. Made possible by a grant, the spread is hosted by CHOC’s Patient- and Family-Centered Care team, which supports CHOC’s philosophy that patients and families are part of the care team.

The breakfasts are designed to offer support and comfort to families who find themselves on the unit for days at a time, often while their children are undergoing testing or experiencing other complications.

“Sometimes it’s as simple as parents asking where they can find toothpaste. I tell them that we can definitely help,” Kathy says with a laugh.

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CHOC Nurse, Patient Share Love of Music

Music has been a bright spot for Christine throughout her entire life – and especially while undergoing treatment at the Hyundai Cancer Institute at CHOC Children’s.

And when CHOC nurse Erika Crawford heard Christine playing a familiar song on a piano while receiving chemotherapy treatment one day, she spoke up.

“I told her I knew that song on the ukulele, and that we should play together,” Erika recalls.

Since then, the pair has regularly jammed together while Christine, 17, is in CHOC’s Outpatient Infusion Center. Inspired by Erika, Christine started learning the ukulele and the pair will tinker on songs together.

They even gave their duo a name: E.C. Teal, which incorporates their initials and the color they both happened to wear one day.

Because infusions can take hours, music helps Christine pass the time and take her mind off her condition.

“I’ve always loved music,” she says. “Going through cancer made me realized just how much I loved music.”

Erika began playing the ukulele only a year ago. She was previously learning the guitar and thought its smaller cousin might help her learn faster. And now, it serves as another way for her to connect with patients like Christine.

“It’s fantastic,” she says. “It’s the best part of the job.”

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Lessons Learned During a Senior Year Spent Fighting Cancer

aya

By Claire Nakaki, CHOC Children’s patient

Hello there! My name is Claire Nakaki. I am a freshman in college, but a little over a year ago, I was a soon-to-be high school senior when I was diagnosed with osteosarcoma, a type of bone cancer. I was a healthy, active volleyball player and I could not understand why this had happened to me. The initial shock was debilitating; cancer had never been something I saw in my future and certainly not my present. I began chemotherapy the month before school started, knowing that I was going to be completing my senior year of high school from a hospital bed. However, after my head and heart had cleared from the turmoil that my diagnosis had brought upon me, I realized that the upcoming year was really just a year. While cancer was something that I knew was going to affect me for the rest of my life, I refused to let it control my life. My surgeon Dr. Nassif asked me before my big surgery (which removed the tumor and replaced the bone with a prosthesis) to set some goals for the upcoming year. Two prominent goals immediately came to mind: I wanted to walk at graduation with my class, on time, without a walker, a wheelchair, or crutches, and I wanted to attend a four-year university after that. These goals did not seem far off, but I unknowingly delved into the hardest year of my life.

I found myself wanting to meet other patients my age almost immediately, begging the Child Life staff to introduce me to any other teens on the floor. I found so much comfort in knowing that there were other teenagers like me experiencing something similar. While no one’s story is identical, discussing the things we do have in common definitely helps soothe an anxious mind. I attended an AYA (Adolescent and Young Adult) support group meeting in my first few months of treatment and then the next following few months, then as often as I could. I had no idea it was even a support group until almost six months in. It felt more like a group of friends who coincidentally have this one big thing in common rather than a solemn meeting to talk about our hardships. Sure, we occasionally brought up things we were going through when someone needed support, but other than that it was just a safe space to be accepted with open arms. This AYA group has become like a second family to me, a fun group of people in all different stages of treatment and survivorship with whom I feel comfortable discussing anything and everything with. I do not know where I would be in my survivorship without this group of people, as well as the entire Child Life staff and AYA facilitators.

I am often asked if the experience was difficult and if I am sad that I missed my senior year of high school. I always have the same answer. Yes, of course it was difficult. I had no idea how difficult it would be. And I am painfully aware that my treatment went much smoother than most. I stayed on the same treatment plan and had very few bumps along the road. I am sure that my classmates enjoyed their senior year at school, but I would not trade this past year for any other situation. I truly mean that. I have learned so much from the genuinely kind and empathetic people that I met at CHOC, both patients and staff members. I reiterate time and time again that I feel so lucky to have had 17 years of life before cancer entered my life and I know that I have many more to come. I met so many younger kids during my stay at CHOC, mainly just a “hello” in the hallway, but there were a small few that I really got to know personally. These kids hold such a special place in my heart. I served as somewhat of a mentor to a few, due to my age and stage in my treatment, what kinds of procedures I had undergone, and what kinds of machines I was attached to. The kids I got to know made such a huge impact on my general attitude towards life and I truly hope that I made a positive impact on them. One piece of advice that I want everyone who goes through cancer to grasp is that no matter how bad you feel or how hard it is to meet your daily goals, your journey is always just one day at a time. It is so important to remind yourself that every day is just 24 hours. All you have to do is just get through the day. Take every step of the way just one day at a time. Soon enough, you will begin to see the light at the end of the tunnel.

aya

As I mentioned in the beginning of the post, I am now a first-year college student, which means that yes, I did meet my goals. I finished the last step of my treatment and was released from the hospital on June 9th and walked at my graduation without a wheelchair, a walker, or crutches one week later. I was accepted to college in the middle of my treatment, and completed all of my required courses in order to attend in the fall. I achieved these goals with a year of incredibly difficult work and with the unconditional support from my family, friends, and CHOC staff. There will always be things I cannot do because of what happened to me and I still go to physical therapy twice a week and have to take extra precautions in almost everything I do, but I am so happy to be back in the real world, living my new normal.

 Learn more about the Hyundai Cancer Institute at CHOC Children’s.

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Living with Arthritis: Carson’s Story

Seventeen-year-old Carson comes from a close-knit family of athletes and had been playing baseball for a decade when consistent, unexplained pain left his family stumped and looking for answers. Countless physical therapy and orthopedic appointments, plus endless X-rays, filled the next 18 months. When an MRI of his spine lead the radiologist reading his images to assume they were from a middle-aged person who’d played a lifetime of contact sports, rather than a 15-year-old boy, finally the family had a clue that Carson’s pain was not just an overuse injury.

At the time, pre-diagnosis, he was traveling a couple hours roundtrip every few days for orthopedic appointments related to wrist, elbow and shoulder pain.

He was ultimately referred to Dr. Andrew Shulman, a CHOC Children’s pediatric rheumatologist, and finally Carson’s family had the answers they’d been seeking for years. Carson was diagnosed with Juvenile Ankylosing Spondylitis, a form of arthritis that affects the spine and sites where muscles, tendons and ligaments attach to bones in the body. He was also diagnosed with Pain Amplification Syndrome, a condition in which patients develop abnormal pain sensitivity. The nervous system processes normal sensations from movement and environmental experience as pain signals. Carson’s family had never heard of Pain Amplification Syndrome before he was diagnosed.

“Dr. Shulman is such a powerful presence in my life,” says Carson. “The way that he explains things, he makes everything so much easier to understand. He relates directly to me.”

juvenile arthritis

Looking back as far as eighth grade, a lot of Carson’s issues were tied to this condition. He had tried everything from water therapy to hypnosis, but nothing was working. Then Dr. Shulman recommended acupuncture and Carson’s mom Andrea says Ruth McCarty, director of Chinese medicine and acupuncture at CHOC, was ‘unbelievable in getting Carson to a good place.’

Carson’s care team also includes physical therapist Robin Beauregard and pediatric gastroenterologist Dr. Mitchell Katz.

Carson’s family is also a key component of his care team.

“Dealing with these diagnoses is a team effort,” says Carson. “My dad carries me up the stairs when my Pain Amplification Syndrome flares up and I can’t walk, and I squeeze his hand during Humira injections. My mom helps me mentally, and she’s made this so much easier to manage. Dr. Shulman has given us a path forward.”

Despite still making his school’s baseball team while fighting a dual diagnosis, Carson could no longer cope with the week or two of pain that came with playing a single inning. Now he works out daily in a gym whether he’s experiencing a flare up or not, which helps with both diagnoses. To fill the void that competitive baseball left, he often plays catch with his friends and former teammates.

“Carson’s journey with arthritis is a powerful one. It speaks to the importance of diagnosing arthritis, and the outcomes we can achieve with therapy,” says Dr. Shulman. “His experience shows that multi-disciplinary care has been transformative.”

Learn more about rheumatology services at CHOC Children’s.

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CHOC Patient Named Calif.’s Children Miracle Network Hospitals Ambassador

Eight-year-old Jordin has sickle cell disease, a disorder that means her red blood cells are misshapen, which can lead to reduced blood flow to many parts of her body, and frequent hospital stays at CHOC Children’s for pain management. But for her, it’s also been an opportunity to fundraise and raise awareness of sickle cell disease.

CHOC is proud to be part of the Children’s Miracle Network Hospitals family, a national network of corporate partners and programs whose fundraising allows CHOC to help kids like Jordin, and offer exceptional care and state-of-the-art treatments and technology for patients and families with the most complex needs in pediatric medicine.

Recently named a Children’s Miracle Network Hospitals Champion, Jordin will spend the next year traveling the country and raising awareness of the needs of children’s hospitals throughout the nation, including those of CHOC.  Each year, one child from every state is honored with this ambassador position.

Jordin’s ambassador tour kicked off with a trip to Washington, D.C. where Champions shared their inspiring stories to encourage charitable support for children’s hospitals, including attending Senate meetings on Capitol Hill. The end of her year as ambassador will conclude with a trip to Orlando, Fla. as the ambassadors reunite to thank and further inspire those who support the children’s hospitals the Champions depend on.

Jordin CMNH
Jordin’s family joined her on her ambassador tour to Washington, D.C.

Jordin’s history with CHOC runs deep. When she was 3 years old, Jordin was admitted to CHOC for complications of sickle cell disease. Her care team suspected acute chest syndrome, one of the most common causes of death in sickle cell patients. Due to technology constraints at the time, tests were sent offsite for evaluation and getting results could take up to a week.

As they awaited the results, Jordin’s family made a commitment to help other kids fighting sickle cell disease.

“During that week, we realized that we needed to step up and do something for CHOC, so no other families had to wait this long,” said Jordin’s mom, Karen.

Karen recruited family and friends with event planning, social media and fundraising experience to form Jordin’s Journey, a group of people dedicated to fighting sickle cell disease, and helping Jordin. They raised $32,000 to secure a Sebia Electrophoresis machine, which helps monitor and treat blood disorders efficiently at CHOC.

When she grows up Jordin wants to be a doctor so she can help other children the way she’s been helped.

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Living with Scoliosis: Jessica’s Story

During a routine check for scoliosis during physical education class in seventh grade, a teacher noticed a slight curve in Jessica’s spine. A trip to her pediatrician soon followed. X-rays showed a thirty degree curve and since that was considered slight, follow-up imaging was recommended for a year later. By that time Jessica’s curve worsened by 15 degrees, and she was referred to Dr. Afshin Aminian, pediatric orthopaedic surgeon and director of the CHOC Children’s Orthopaedic Institute.

Bracing was initially recommended to try to prevent Jessica’s curve from getting worse.

“People my age don’t know that much about scoliosis even though it’s so common,” says Jessica. “I only had to wear my brace at night while I was sleeping, so no one ever really saw it or had the opportunity to tease me because of it, but they still asked questions, like was it comfortable or not.”

Although Jessica was vigilant about wearing her brace as instructed, her curve worsened by another twenty degrees, to nearly 70, and surgery was recommended. As a lifelong dancer, and a member of her high school’s competitive dance team, Jessica was initially worried that having surgery to correct this significant curve would affect her flexibility.

scoliosis
Jessica’s spine, before and after surgery.

“It’s very common for children or adolescent patients to be hesitant or even fearful when they first hear they need surgery,” says Dr. Aminian. “We encourage all of our patients to ask a lot of questions so they really feel like they are involved in their care team. We remind them that the team of orthopaedic surgeons at CHOC uses the very latest methods in a setting that’s specially designed for kids and teens, so they are in the best hands possible.”

Jessica’s surgery was ultimately set for winter break during her sophomore year of high school.

“All of my nurses were so impressed that I was up and walking the next day, but after I went home it was harder than I thought to move around” she said.

At a check-up with Dr. Aminian a few weeks later, Jessica was healing so well that she was able to return to school three weeks after surgery, as opposed to the three month break she had expected. Thanks to her flexibility as a dancer prior to surgery, she could even touch her toes at her follow up appointment, to the surprise of her care team.

Getting back into the groove of a full school day did not come without challenges. To protect her spine as it continued to heal, Jessica had to adjust to sitting for longer periods of time, something she slowly worked up to before returning to school. She also brought a small pillow to school to make her desk more comfortable, and made arrangements with teachers to keep textbooks in class so she didn’t have to carry them around.

“For an active person like me, not being able to bend, twist or lift anything for three months was hard, but in the end it made me thankful because my recovery was temporary, and overall I am really healthy,” she says.

Jessica knew she wanted to document her recovery phase, so she asked her mom to film some footage while she was in the hospital. That eventually morphed into a series of YouTube videos educating others on scoliosis, recovery tips, and sharing her own journey with the condition. When she was diagnosed, she knew others who had scoliosis, but no one’s curve was as severe as her own, so some peer-to-peer questions were left unanswered.

scoliosis
After her own successful scoliosis surgery, Jessica now imparts wisdom on other teens suffering from scoliosis.

“I want other scoliosis patients to know that it’s going to be hard, and you will have times when you can’t do something, but I promise it will get easier if you just go at your own pace and follow your doctor’s guidelines,” she says. “I love getting messages from people that watch my videos, thanking me for helping to calm their nerves before surgery.”

Filming these videos and helping other patients has helped to fill the void that dancing left. After losing one year of practice time due to surgery and recovery, Jessica decided not to go back to dancing.

“I’m busy in different ways now,” says Jessica. “Dancing provided great memories for me, but I’m on to a new chapter now.”

Related posts:

  • Living with Scoliosis: Ellie’s Story
    Ellie was a typical seventh grade student who enjoyed playing volleyball when, during a routine physical, her pediatrician noticed that one shoulder appeared to be a little higher than the ...
  • Kids and Spine Issues
    Scoliosis is the a sideways shifting of the spine from the right or left. The cause of scoliosis is unknown, but scientists have recently identified genetic ...

Music to a Little Girl’s Ears

Penelope Grand had normal hearing from the day she was born. She loved to dance to music and she was easily woken by noises. Her parents, Luci and Paul, anxiously awaited her first word. Then, when she was about 10 months old, something changed.

“We really knew there was something wrong when I went to get her out of her crib after her nap one day,” mom Luci says. “She was calling out and fussing, she wanted out of there, and I came into the room but she wasn’t facing the door. I stood right in front of her crib and I called out her name, I clapped, but I got no response from her.”

Genetics are the cause of roughly half the cases of prelingual deafness, even when symptoms don’t appear at birth, as in Penelope’s case. Hearing tests and an auditory brainstem response (ABR) test revealed that Penelope had developed profound hearing loss in both ears. She had become essentially deaf.

“We were devastated,” Luci says. “I was preparing to hear ‘mild to moderate,’ not ‘profound.’ The air sucked out of my lungs. I wondered why. She is so sweet and loving, why did she have to lose her hearing?”

cochlear implant

Penelope’s audiologist prescribed hearing aids, but she had no benefit from them. That made her an ideal candidate for a cochlear implant, a new treatment offered at CHOC Children’s in close partnership with Providence Speech and Hearing Center. A cochlear implant is a small electronic device that is surgically implanted under the skin behind the ear, and has an electrode that extends into the cochlea in the inner ear. The implant’s electrode directly stimulates the cochlear nerves that perceive sound.

Dr. Nguyen Pham, CHOC pediatric otolaryngologist and head and neck surgeon, performed two outpatient surgeries on Penelope to place a cochlear implant on each of her ears.

“A cochlear implant can be life-changing for a child,” Dr. Pham says. “Children who would have been in the deaf community are now joining the hearing community because of cochlear implants. It is essentially restoring nearly normal hearing in these children.”

A Sense of Sound Restored

Oct. 13, 2015, was a memorable day for the Grands. That’s the day Penelope’s cochlear implant was activated, amidst her family and a crowd of supporters from CHOC and Providence.

Penelope begins to hear at 0:06.

“The first moment we knew she could hear was, well, it’s hard to describe what that felt like: joy, pride, happiness, excitement,” Luci says. “The look on her face was beautiful. We must have rewatched that video a hundred times.”

A cochlear implant does not translate sound perfectly. Those who wear an implant hear sounds with a robotic, mechanical quality. Following the implant’s activation, Penelope’s team of audiologists at Providence fine-tuned the frequencies of the electrodes—a process called mapping—until they produced the optimal sounds for her ears.

Now, she is undergoing comprehensive speech and language therapy, a crucial step in helping her interpret the sounds she hears and learn to communicate. She also uses American Sign Language.

“We are in awe of her, how much she’s already progressed,” Luci says. “She responds to her name now when we call out to her. She finally said her first word, bye bye, and she can now say mom. She has begun to dance again. She also has started singing in the car with me along to the music. We realized that she is so smart and so very happy, and her potential is endless. We are happy and grateful every day that she had this opportunity.”

Learn more about the CHOC Children’s Cochlear Implant Program.

 The Cochlear Implant Program is generously supported by Wildcard Army, in memory of Nixon Wildcard Hunter. 

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Living with Hemophilia: Nick’s Story

Nick Carebetta is an active 31 year old.  When he’s not busy managing a restaurant, he’s surfing, running or hiking.  The athlete has completed numerous half marathons and three Spartan races.  To friends and family, he’s the picture of perfect health.  In fact, people may be surprised to know Nick has hemophilia A.

A disease that prevents blood from clotting properly, hemophilia A is caused by a deficiency of a clotting protein called factor VIII.  Nick’s case is considered severe.  Patients like Nick bleed longer after an injury, and may have frequent spontaneous internal bleeding episodes in their joints and muscles.

Diagnosed with the disease when he was 3 months old, Nick experienced several bleeding episodes in his left ankle.  The pain and inflammation impacted his mobility, which left him dependent on crutches for much of his childhood.

When he was 13, he underwent a procedure called radioactive synovectomy. A small amount of Yttrium, a radioactive material, was injected into Nick’s ankle to reduce the number of cells in the joint lining.  This reduction leads to decreased inflammation, and hopefully less pain and more movement.  Yttrium is used due to its low radioactive energy levels and its ability to leave the body quickly. Nick had the procedure performed twice.  About four months after the second injection, Nick’s bleeds stopped; his pain dissipated; and his mobility returned.

Today, Nick manages his disease with help from CHOC Children’s hematology team.  During his annual check-ups, he meets with a physician, physical therapist, psychologist and nurse coordinator.

“I am so impressed with the compassionate and comprehensive care I receive at CHOC.  From the physicians, who are highly regarded in their field, to the psychologists, who care about my mental well-being, the entire team is dedicated to making sure their patients live happy, healthy and fulfilling lives, despite their disease,” says Nick.

Living with hemophilia

There is currently no cure for hemophilia.  Treatment includes clotting factor replacement therapy.  Nick gives himself shots of a clotting factor, called factor VIII, three times a week.  Depending on his level of activity, he may adjust his dose.  He also follows instructions from his CHOC care team to preserve his joint mobility and core muscle strength.  He doesn’t let his treatment or his disease interfere with his life.

“Nick is setting an example for all of our patients that hemophilia does not define who he is.  He chooses to be more,” says Dr. Amit Soni, CHOC hematologist.  “In addition to his active lifestyle, he is passionate about theater and the arts, and is leading the restoration effort of a historic theater.  He’s also incredibly altruistic in his efforts to give back to the community, whether through participating in clinical trials to advance hemophilia care for the next generation to raising money by joining in the CHOC Walk.”

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