CHOC Included Among Nation’s Best Children’s Hospitals in U.S. News Survey

CHOC Children’s has been named one of the nation’s best children’s hospitals by U.S. News & World Report in its 2017-18 Best Children’s Hospitals rankings.

CHOC ranked in seven specialties: cancer, diabetes/endocrinology, neonatology, neurology/neurosurgery, orthopedics, pulmonology and urology, which earned a top 20 spot on the coveted list.

According to U.S. News, the Best Children’s Hospitals rankings were introduced in 2007 to help families of children with rare or life-threatening illnesses find the best medical care available.

The 11th annual rankings recognize the top 50 pediatric facilities across the United States in 10 pediatric specialties.

The U.S. News Best Children’s Hospitals rankings rely on clinical data and on an annual survey of pediatric specialists. The rankings methodology considers clinical outcomes, such as mortality and infection rates, efficiency and coordination of care delivery and compliance with “best practices.”

“At CHOC Children’s, we are steadfastly committed to delivering high-quality, safe and reliable health care to our patients,” said Dr. James Cappon, CHOC’s chief quality officer. “Recognition from U.S. News of our excellence in these seven subspecialties validates our efforts, but also provides our patients and families with even more assurance of our commitment to excelling in all areas of care.”

“The pediatric centers we rank in Best Children’s Hospitals deliver exceptionally high-quality care and deserve to be recognized for their commitment,” U.S. News Health Rankings Editor Avery Comarow said. “Children with life-threatening illnesses or rare conditions need the state-of-the-art services and expertise these hospitals provide every day.”

Learn more about survival rates, adequacy of nurse staffing, procedure and patient volume, availability of programs for particular illnesses and conditions and more. 

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CHOC Walk in the Park 2017: Why I Walk – Team Miranda

Seven years ago, Miranda woke up screaming in the middle of the night from unbearable head pain. She couldn’t move or recognize her parents, and then she collapsed.

Miranda’s parents rushed her, a 10-year-old at the time, to a local hospital. Physicians there initially told them to wait three days for observation.

Dr. Jason Knight, a CHOC Children’s pediatric critical care specialist and medical director of CHOC’s emergency transport services, was on call at that hospital that day, and met with Miranda’s parents, Regina and John.

An Emergency Transport to CHOC

“Dr. Knight explained what was happening better than anyone else at the hospital,” Regina remembers. “He suggested we transport her to CHOC so she could be seen by pediatric specialists. We were scared to move her, so we asked Dr. Knight if he would transport Miranda if she were his own daughter. He said yes, and we trusted him.”

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Dr. Jason Knight, critical care specialist, chair of the department of medicine, and medical director of emergency transport services at CHOC Children’s

Dr. Knight recalls, “As the physician covering the local hospital that day, it was my responsibility to assure that Miranda received the appropriate care in a timely manner. As soon as I assessed her condition and reviewed the CT scan of her brain, it was clear to me that Miranda needed to be transferred to CHOC immediately. I contacted Dr. Michael Muhonen, a pediatric neurosurgeon at CHOC, and coordinated Miranda’s transfer to CHOC.”

Scans revealed she had an arteriovenous malformation (AVM), a tangle of weakened blood vessels that had ruptured and started to bleed in her brain. Upon arrival at CHOC, Miranda immediately underwent neurosurgery with Dr. Muhonen, medical director of the neuroscience institute at CHOC.

“Miranda was critically ill upon arrival to CHOC. She reminded me of my own three daughters― innocent, beautiful and vulnerable. It was with this in mind that I approached her operation― do what it takes to keep her brain alive and functional,” recalled Dr. Muhonen.

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Dr. Michael Muhonen, medical director of the neuroscience institute and director of neurosurgery at CHOC Children’s

After a successful four-hour surgery, Miranda was placed in a medically-induced coma for several days. Her parents didn’t know if she would survive.

“When Miranda was in a coma, I told Dr. Knight that I wanted to take a photo of her so that I could show her when she woke up, but that I didn’t want to take it if she wasn’t going to make it,” recalls Regina. “For a few days, he wouldn’t let me take the photo because he wasn’t sure if Miranda was going to survive. Then one day, Dr. Knight told me it was ok to take a photo of her, and I knew that meant she was going to make it.”

John adds, “My family is intact today because of wonderful doctors like Dr. Knight, Dr. Muhonen and their teams. It’s just amazing what CHOC does. We are so blessed.”

The Long Road to Recovery

Miranda’s recovery process included child life specialists, physical therapy and rehabilitation. She spent one month at an inpatient rehabilitation facility followed by an additional three months of outpatient care learning how to walk and talk again.

The first year after surgery was critical. Miranda saw Dr. Muhonen every few months for checkups to monitor her brain, as well as a CHOC ophthalmologist to make sure her sight was progressing.

“The AVM and the clot were removed successfully, and Miranda has recovered with minimal long-term deficit,” says Dr. Muhonen. “My reward is not only seeing a disease-free brain on the post-operative MRI, it is the omnipresent smile and effervescent personality that Miranda still has, despite her near-death experience.”

Everything came back except her sight. She lost 25 percent of her vision in both eyes, but that hasn’t stopped her from dancing, her favorite activity since age 8. Miranda’s parents had to supervise her at all times for the first year after surgery to make sure she didn’t have a seizure (a possible side effect of brain surgery), which meant that her mom went to every dance practice and every pool party to ensure her daughter’s continued safe healing.

Giving Back to CHOC

A few months after Miranda’s surgery, her family was invited to participate in CHOC Walk in the Park by friends.

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Miranda and her family at their first CHOC Walk in the Park, just a few months after her emergency neurosurgery

“After what we went through, we felt closely tied to CHOC. We walked that year and fell in love with the event. We realized this was an affordable way to give back to CHOC,” recalls John. “My favorite memory was our very first CHOC Walk. Miranda walked alongside us, which was a huge accomplishment. A couple months before that, we weren’t sure if she was ever going to walk again. To see her walk on her own was the most memorable moment for me.”

The family’s first CHOC Walk was especially impactful for Miranda herself.

“I will never forget attending my first CHOC Walk one year after my surgery. I remember seeing other patients participating in the walk with their own team just like me, only they needed walkers or wheelchairs to have the capability of walking the entire distance. Seeing other patients that were struggling to do the simple task of walking, something that people take for granted, made me reflect back to being a patient at CHOC, where I once struggled with relearning how to walk during physical therapy,” recalls Miranda. “From that moment on, I promised myself I would always participate in the CHOC Walk and give back as much as I could, not only to represent the patients who couldn’t recover as fast as I did, but also for the patients that don’t make it. I am reminded every day by the scar on the back of my head of how blessed I am to have been a patient at CHOC.”

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Every year since her emergency surgery, Miranda’s family rallies dozens of friends to participate in CHOC Walk in the Park.

Every year since then, Miranda’s parents gather dozens of friends, family and co-workers to join Team Miranda, the CHOC Walk team they formed in honor of their daughter. They formed their team with the help of the Littlest Angel Guild, a philanthropic group that raises funds to support the mission of CHOC.

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Miranda and her family at the 2012 CHOC Walk in the Park

“We encourage people we meet to participate in CHOC Walk to help provide the best medical care for the children in our community. You never know if or when CHOC’s services will be needed for your children, for your friend’s children, for your neighbor’s children, or even a stranger,” says John, whose employer, Hill Brothers Chemical Company also sponsors CHOC Walk, in addition to the other philanthropic events benefiting CHOC. “We learned firsthand how much everyone at CHOC cares – the doctors, the nurses, the administrators, and staff throughout CHOC all genuinely care about the children and their families.”

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Team Miranda at the 2013 CHOC Walk in the Park

Experience at CHOC Inspires Future Career

Now a senior in high school, Miranda is preparing for graduation and heading off to college. Inspired by her experiences at CHOC, she is planning to major in psychiatry and dreams of becoming a pediatric optometrist.

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Why One Mom Is Thankful for CHOC This Year

By Karen Stapleton, CHOC parent and mom of Noah

Happy Thanksgiving! My name is Karen Stapleton, and my son Noah is a patient at CHOC Children’s. As I prepare to celebrate the holidays with my family, I’m grateful we can be together since we have so much to celebrate. I’m also grateful for Noah’s many doctors and nurses at CHOC because without them, my son wouldn’t be alive.

Noah’s birth story

When I was 29 weeks pregnant with Noah, we learned that he had Down syndrome. Another prenatal ultrasound showed an abnormality in his heart, and we were referred to Dr. Pierangelo Renella, a pediatric cardiologist at CHOC, who diagnosed Noah with tetralogy of fallot, a serious heart defect that causes poor oxygenated blood flow from the heart to the rest of the body. I was scared, but having been a CHOC patient myself as a child, I knew my son would be in good hands.

Karen and Noah in the NICU, shortly after Noah was born
Karen and Noah in the NICU, shortly after Noah was born

On July 27 of last year our lives changed forever— Noah was born! I chose to deliver at St. Joseph Hospital in Orange so that my son could be as close to CHOC as possible. When he was born, there were so many doctors and nurses around. I saw Noah quickly enough to give him a kiss before he was whisked away to the Neonatal Intensive Care Unit (NICU) at CHOC.

Shortly after birth, Noah’s care team also diagnosed him with Apert syndrome, a genetic disorder that causes certain bones to fuse early. For Noah, that was his skull, fingers and toes.

 

A series of surgeries begins at 3 days old

Noah’s first surgery happened just three days after he was born. Due to the complexity of Noah’s conditions, the surgery was a team effort from multiple CHOC specialties. Noah’s gastroenterologist Dr. Jeffrey Ho; his team of cardiologists Dr. Renella, Dr. Michael Recto, Dr. Anthony McCanta, and Dr. Gira Morchi; his pulmonologist Dr. Amy Harrison; his otolaryngologist Dr. Felizardo Camilon; and the entire NICU team came together to prepare him and get him through that surgery.

It was a success, and 31 days after he was born, Noah finally came home! Weekly trips back to CHOC’s clinics included visits to gastroenterology, pulmonary, cardiology and craniofacial specialists. It was another team effort to prepare Noah for a second open heart surgery that he would eventually need.

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Noah and his cardiothoracic surgeon, Dr. Richard Gates

But a few weeks later, Noah had respiratory complications, which lead to an emergency open heart surgery at just 2 ½ months old. Thanks to Noah’s cardiothoracic surgeon, Dr. Richard Gates, and Noah’s fighting spirit, he was able to come home shortly after surgery.

Celebrating Christmas at CHOC

Just days before Christmas last year, Noah had to be admitted to CHOC for respiratory failure. It was scary to see my baby sedated for 19 days. Dr. Juliette Hunt, a critical care specialist, recommended that Noah undergo a tracheostomy, where a small opening is made in his windpipe and a tube is inserted to help him breathe. Making a decision like that is hard and scary for a mom, but I had complete trust in Noah’s team, and if they knew it would help Noah breathe easier, then I knew it was the right thing to do.

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Noah celebrated his first Christmas at CHOC

After that, Noah started to thrive. He gained weight and became strong enough for his next open heart surgery with Dr. Gates. After a mere six days in the Cardiovascular Intensive Care Unit following this surgery, Noah got to come home again!

Even when Noah is doing well, sometimes it can be scary to care for him when he’s at home. During one of our hospital stays, I confided this fear in one of Noah’s favorite nurses, Karissa. She gave me specific tips on what to do during his tummy time and baths, and gave me the courage to care for my son. She encouraged me, and reminded me that CHOC wouldn’t advise me to do anything that wasn’t safe.

Noah and Karissa, a registered nurse at CHOC

Noah’s first birthday

All of this is a lot for a little baby to go through before his first birthday, but Noah has always surprised us and pulled through. Celebrating his first birthday meant more than celebrating his first year of life; it meant celebrating every fight Noah had won over the last year, and it meant appreciating a milestone that at times we thought we might never reach. We decided a super hero theme was perfect for his party because we think of Noah as our little super hero.

Noah celebrating his first birthday

After his birthday, Noah continued to flourish and grow! He started rolling over and actively playing, and he has not stopped smiling.

This progress allowed us to prepare for his next major surgery, a frontal orbital advancement, to reshape his skull and forehead that has fused too early due to Apert syndrome.

Before surgery could begin, the doctors needed to cut Noah’s hair to make a safe incision in his skull. We marked another one of Noah’s milestones at CHOC— his first haircut!

Noah received his very first haircut at CHOC from his neurosurgeon Dr. Michael Muhonen, prior to a skull surgery.
Noah’s very first haircut happened at CHOC. He received it from his neurosurgeon Dr. Michael Muhonen, prior to skull surgery.

With the expertise of his neurosurgeon Dr. Michael Muhonen and his plastic surgeon Dr. Raj Vyas, and a very short stay in the Pediatric Intensive Care Unit, Noah came home again! After yet another successful surgery at CHOC, his brain can now continue to grow.

Noah has more hurdles and additional surgeries ahead of him, but even with how much he’s fought, he continues to smile. He’s not cranky and he doesn’t cry. He’s enjoying every single day he gets to be here – and that’s the life he has taught me to live too.

If Noah’s care team ever needs a reminder of why they do what you do, I tell them: My son would not be here today if it were not for each and every one of them here at CHOC. And for that, my family will be forever grateful.

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After Years of Seizures, Overcoming Epilepsy

Deena Flores has her sights set on a big party next spring for her daughter, Mareena.

It’s not for her birthday, but rather an anniversary of sorts. By May 2017, Mareena will have lived without seizures longer than she endured them.

It’s a milestone that once seemed unreachable for the Flores family, who finally got relief from years of seizures when they found help from CHOC Children’s Neuroscience Institute.

“The seizures flipped our family. We didn’t go anywhere. We wouldn’t want to leave her with anyone. It was a deep dark hole for a few years,” Deena says. “To see her flourish and open her wings and experience life now is amazing.”

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Mareena is flourishing after epilepsy surgery.

Now 9, Mareena began experiencing seizures at around 10 months old. After a normal birth and infancy, she suddenly started rolling her eyes backward and going limp.

For years, the family went from hospital to hospital and doctor to doctor, looking for an explanation.  Walking, talking and developing normally, Mareena would grow out of it, physicians told the family.

By age 4, Mareena was enduring up to 20 seizures a day, mostly linked to sleep. Medications were not working. Deena and her husband would take turns sleeping in their daughter’s room, desperate to record every seizure in hopes of finding a pattern.

Mareena’s parents reached their breaking point in fall 2011. One morning while eating breakfast, Mareena seized, fell from her chair and hit her head on the tile floor. That was enough.  Mareena needed help badly, and they turned to Dr. Mary Zupanc  and CHOC’s comprehensive epilepsy program.

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Dr. Mary Zupanc, director of the comprehensive epilepsy program and chair of neurology at CHOC Children’s

“Within the first five minutes of the appointment, Dr. Zupanc told us that Mareena’s medication wasn’t working, and because epilepsy is a progressive disease, it was critical that we find a new solution quickly,” Deena recalled.

Mareena began undergoing extensive testing, including long-term video electroencephalogram (EEG) monitoring to determine seizure type and seizure frequency. During that time, Dr. Zupanc first broached the subject of surgical intervention to help Mareena.

“The idea of brain surgery was scary,” Deena recalled. “But at the same time, it was a relief, especially after all the years we lost while trying to convince doctors that something was wrong”.

In May 2012, the family began the process for surgical intervention, including an MRI scan of the brain to look for subtle structural changes in the brain and a PET scan, which looks at glucose metabolism in the brain.

Mareena’s case was then reviewed by a group of CHOC physicians. The physicians, including Dr. Zupanc, were in agreement that Mareena should have epilepsy surgery.  However, in order to identify the exact seizure focus, invasive EEG monitoring was required. This means that electrodes had to be placed directly on the surface of the brain. Over a series of days, Dr. Zupanc and the other epilepsy specialists determined that the seizures were coming from the brain’s left temporal lobe. Next, surgeons removed that portion of the brain.

Mareena has been seizure-free ever since. She still takes one low-dose of antiepileptic medication, but her visits with Dr. Zupanc have reduced significantly. She no longer requires long-term video EEG monitoring or other studies.

Mareena is now headed for third grade.  Though she does have some mild cognitive delays—due to the underlying cause of her epilepsy and her prior high seizure frequency, she is thriving and doing very well. Deena says people are shocked when they learn about Mareena’s history.

“She’s a walking miracle,” Deena says.

Learn more about epilepsy surgery.

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Seizure-Free at Five, Thanks to Epilepsy Surgery and ROSA Robot

Five-year-old Ian Higginbotham recently enjoyed his best summer yet. He experienced his first family vacation. He learned to swim and ride a bike. He got himself ready for kindergarten. These are milestones most kids and parents, alike, eagerly welcome. But there was a time when Ian’s parents weren’t certain their son, who was born seemingly healthy, would enjoy such happy pastimes.

Ian began talking and walking in his sleep as a toddler. When the episodes, including night terrors, increased in frequency and severity, his mom Lisa made an appointment with the pediatrician. One day, Lisa knew something just wasn’t right and didn’t want to wait for the appointment to get Ian checked out. She and her husband Derek took him to the Julia and George Argyros Emergency Department at CHOC Children’s Hospital. To her surprise, doctors diagnosed her son with epilepsy.   Ian’s “sleepwalking” and “night terrors” were actually seizures.

The family was referred to CHOC’s comprehensive epilepsy program. A national leader in pediatric epilepsy care, CHOC’s comprehensive epilepsy program offers cutting-edge diagnostics, innovative medical approaches and advanced surgical interventions. CHOC was the first children’s hospital in the state to be named a Level 4 epilepsy center by the National Association of Epilepsy Centers, signifying the highest-level medical and surgical evaluation and treatment for patients with complex epilepsy.

Ian’s neurologist Dr. Andrew Mower suspected he was experiencing complex partial seizures, which was confirmed by video EEG monitoring. Complex partial seizures start in a small area of the temporal or frontal lobe of the brain, and quickly involve the areas of the brain affecting alertness and awareness. The pattern of Ian’s seizures suggested they were originating from the right frontal lobe. Dr. Mower knew Ian and his family were in for a tough journey.

“I really don’t think the general public understands the impact epilepsy has on a child and his family. Its effects are multifaceted and extensive. Our team’s goal is to reduce or eliminate our patients’ seizures, helping improve their quality of life,” explains Dr. Mower, who placed Ian on a series of medications.

The medications reduced Ian’s seizures, but did not control them. Dr. Mower was concerned about the seizures affecting Ian’s development, and presented his case to the epilepsy team.  The multidisciplinary team agreed Ian was a candidate for epilepsy surgery. For children who fail at least two medications, surgery may be considered early in treatment versus as a last resort. Surgery can result in an improvement in seizure control, quality of life, and prevent permanent brain damage. Ian’s surgery was going to be performed by CHOC neurosurgeon Dr. Joffre Olaya.

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Ian recovering from epilepsy surgery at CHOC.

While the thought of surgery was frightening to Lisa and her husband, they were confident in the team and comforted to know their son was going to benefit from innovative technology, like the ROSA™ Robot. Considered one of the most advanced robotized surgical assistants, ROSA includes a computer system and a robotic arm. The computer system offers 3D brain mapping to aid surgeons in locating the exact areas they need to reach and planning the best surgical paths. The robotic arm is a minimally invasive surgical tool that improves accuracy and significantly reduces surgery/anesthesia time.

Dr. Olaya used ROSA to accurately place electrodes in the area of Ian’s brain suspected to be the source of his seizures. By using the robot, Dr. Olaya avoided performing a craniotomy (surgery to cut into the skull, removing a section called a bone flap, to access the brain).

“ROSA is an amazing tool that yields many benefits for our patients, including less time under anesthesia in the operating room. It reduces blood loss and risk of infections. Patients tend to recover faster than they would if they had craniotomy,” says Dr. Olaya.

Lisa was amazed at the outcome. “I couldn’t believe how great Ian looked after the placements of the electrodes with ROSA. He wasn’t in any pain, there was no swelling. It was wonderful!”

She and her husband were also amazed at how well Ian did following his epilepsy surgery.

“We got our boy back,” says Lisa. “There were no more side effects from medication and, more importantly, no more seizures!  He started developing again and doing all the things a child his age should do.”

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After epilepsy surgery, Ian has been able to do things other kids his age are doing, like riding scooters.

Ian’s care team isn’t surprised by his recovery.

“Children are resilient, and their brains are no different. In fact, the plasticity of a young brain allows it to adapt to changes and heal more easily than an adult brain,” explains Dr. Mower.

Learning to ride a bike and swim were among the first of many milestones Ian quickly reached following surgery. He enjoys playing with his younger brother and his friends. And, whether inspired by his experience with ROSA or not, Ian loves robots.

Read stories:

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.”

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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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Derek’s Story: A Landmark Procedure

Derek Young looked like any other baby when he was born in February 1994. But 3-1/2 months later, his mother Pamela noticed his head was slowly getting larger. Doctors diagnosed hydrocephalus, or fluid on the brain, and placed a shunt to drain the fluid. Fast forward 10 years when Derek needed a shunt revision. He was treated at the CHOC Children’s Neuroscience Institute and released.

CHOC Children's Neuroscience Institute

However, six months later, Derek returned to CHOC with what appeared to be a failure of the original shunt. Neurosurgeon Dr. Michael Muhonen decided to perform a pioneering procedure called a third ventriculostomy in which he made a tiny hole in the wall of the third ventricle of the brain — allowing movement of fluid out of the blocked ventricle.

As a result of this extraordinary surgery, Derek no longer required a shunt nor did he or his mother need to live in constant fear of shunt failure. An avid swimmer, this procedure allowed him to continue to pursue his passion, including completing a Catalina-to-Long-Beach swim to raise money for CHOC.

Derek is now a 6’2” 20-year-old junior at Northern Arizona University studying to be an emergency room or intensive care unit nurse, a career directly inspired from his experience with CHOC. From the compassionate, skilled nurses who made him laugh to the expert, encouraging doctors who described the procedure in terms he could understand, Derek’s experience with CHOC was life-changing.

Learn more about CHOC Children’s Neuroscience Institute.

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Meet Dr. Muhonen

Dr. Michael Muhonen, neurosurgeon and medical director of the CHOC Children’s Neuroscience Institute, strives to make sure that his team is always ready to employ the most innovative techniques using state-of-the-art equipment. His goal is to use non-invasive procedures, and, in cases where standard therapies aren’t available, to pioneer new ones, focusing on optimizing patient outcomes from surgery.

“There is less trauma to normal tissue when we can remove a three-inch tumor from a one-inch opening instead of a seven-inch opening,” explains Dr. Muhonen. “This is accomplished by aggressively using brain endoscopes and the newest stereotactic devices. We are also developing techniques to make incisions in the eyebrow, and to work under and around the brain rather than through it. We do everything we can to minimize pain, recovery time and physical evidence of surgery.”

Dr. Muhonen

But along with leading-edge surgical techniques and innovative procedures come compassion and empathy for each of Dr. Muhonen’s patients and their families. After all, he’s not just a world-class neurosurgeon, he’s also a father. When a child comes under his care, he does whatever it takes to reassure the parents that their child is in good hands.

“I strive to treat my patients and their parents as though they were my own family,” says Dr. Muhonen. “They have easy access to my cell phone and pager numbers so they have a ‘security blanket.’ At CHOC, we are all part of one big family.”

And Dr. Muhonen and his colleagues wouldn’t have it any other way.

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Kara’s Story: A Journey with Epilepsy

Heidi Sexton knew her young epileptic daughter, Kara, needed more help. Anti-seizure medications didn’t help, hospital visits were frequent, and seizures and tantrums continued.

“It was time,” Heidi recalled. “I went in to the next doctor’s appointment with my questions: What else can we try? This isn’t working.”

Dr. Mary Zupanc, director of CHOC Children’s comprehensive epilepsy program, offered her recommendation: Kara needs brain surgery.

A little girl’s long road

Though no doubt a staggering consideration, brain surgery would be the next landmark on a long medical history that belied Kara’s short three years of life.

At just 13 months old, she underwent emergency brain surgery after her frontal lobe hemorrhaged, caused by a previously undiscovered vascular malformation. The hemorrhage in Kara’s brain led to right-side hemiplegia, leaving her no use of her right hand and limited the use her right leg.

Kara underwent physical therapy and began walking at age 2. Life was relatively normal for the Sexton family until just after Kara’s third birthday, when she began acting strangely.

Kara’s body would stiffen, she’d fall down and stare off into space, Heidi recalled. It wasn’t until a visit to the Julia and George Argyros Emergency Department at CHOC Children’s Hospital that the Sextons would learn Kara was having seizures.

At the CHOC Children’s Neuroscience Institute, Kara underwent an electroencephalogram, or EEG, a test that monitors for electrical activity in the brain. Next, she spent six days undergoing long-term video EEG monitoring. From there, Dr. Zupanc, also CHOC’s neurology division chair, made an official diagnosis of epilepsy and prescribed an anti-epileptic medication.

Exploring other options

Nonetheless, Kara’s seizures continued. Kara’s three older siblings were acutely aware of their sister’s disorder, daily counting Kara’s seizures and agonizing over each hospital visit. The family began to placate Kara in hopes of staving off outbursts and tantrums, Heidi said.

“Kara had between two and four seizures a day,” she said. “It really messed with her behaviorally. She’s a lovely kid, but she suffered serious temper tantrums. It was physically and emotionally exhausting.”

A second six-day monitoring session led Dr. Zupanc to change Kara’s medication and, as a precaution, begin evaluating her as a candidate for epilepsy brain surgery.

Further tests and scans revealed that the left hemisphere of Kara’s brain was significantly injured and atrophied – likely related to her earlier hemorrhage. In addition, Kara’s new anti-epileptic medication wasn’t working.

Dr. Zupanc concluded that the next step was a hemispherectomy, a surgical procedure in which one side of the brain is removed or disconnected.

Kara

“On scans, Kara’s hemisphere was completely white,” Heidi said. “The only thing her left hemisphere was doing was causing seizures. There was no question.”

A change of course

Nearly 11 months after the seizures first surfaced, Kara underwent surgery at CHOC to remove a portion of her brain’s left side, and disconnect the remaining portion from the right hemisphere. Performed by neurosurgeon Dr. Joffre Olaya, the procedure lasted six hours.

After 16 days recovering in the hospital’s pediatric intensive care unit, Kara went home just after her fourth birthday.

Much to her parents’ and siblings’ relief, Kara hasn’t had a seizure since her surgery eight months ago. Kara still relies on an anti-epileptic medication, but she may be able to stop taking it completely or use a lower dose of medication soon if her progress continues.

Though considering a second brain surgery was daunting for the Sextons, Heidi and her husband knew the procedure was the right choice to help their daughter.

“I looked at it in a sense of quality of life for Kara,” Heidi said. “Hopefully now she’ll be able to drive one day. Continued seizures would have impaired her cognitively forever, and I didn’t want that.”

Though she still requires extensive care, Kara is doing well physically and emotionally and is looking forward to preschool.

Kara isn’t fully aware of her journey in the last year, but she understands the meaning of the scar on her head just above her ear.

“She knows now that she doesn’t have seizures and Dr. Olaya and Dr. Zupanc fixed her,” Heidi said.

Read other stories about CHOC patients:

  • CHOC Patient Inspired to Become CHOC Doc
    At 6 years old, Vanessa Avina was more interested in viewing the monitor for her echocardiography (heart ultrasound) than watching a cartoon during her doctor’s visits. Her CHOC pediatric cardiologist ...
  • CHOC Walk in the Park: Justin’s Helpers
    As it celebrates its 25th anniversary, CHOC “Walk in the Park” has raised more than $24 million to fund education, research and adoption and utilization of the latest technologies to ...
  • A Bright Future: Ian and Micah’s Story
    Even though I’ve been hanging around CHOC Children’s for a long time now, I am continually surprised by the courage, tenacity and strength of the patients I meet. It’s especially ...

 

Celebrate Doctor’s Day – Dr. Michael Muhonen

In honor of Doctor’s Day – March 30th –  we’ve been highlighting some of our doctors throughout the month of March! Check out this video with Dr. Muhonen, Medical Director of the CHOC Children’s Neuroscience Institute and Director of Neurosurgery, who shares what he is most excited about in The Bill Holmes Tower at CHOC Children’s.

Thank you Dr. Muhonen, and all of our CHOC doctors, for your dedication and commitment to the patients and families we serve!

Related content:

  • Thank You CHOC Doctors!
    The nation will formally recognize physicians on Doctors’ Day later this month – March 30, to be exact – but not a day has gone by in the last 50 ...
  • Celebrate Doctor’s Day – Dr. Gary Goodman
    In honor of Doctor’s Day, we’re highlighting CHOC Children’s doctors throughout the month of March. Check out Dr. Gary Goodman, Medical Director of the Pediatric Intensive Care Unit (PICU) at CHOC Children’s at ...
  • Celebrate Doctor’s Day – Dr. Richard Gates
    In honor of Doctor’s Day, we’re highlighting CHOC Children’s doctors throughout the month of March! Check out this video with Dr. Richard Gates, Surgeon-in-Chief and cardiothoracic surgeon at CHOC, who shares ...