Batten disease patients highlight CHOC’s growing reputation as a destination for kids with rare conditions

In the yard of his home just outside Boise, Idaho, Ely Bowman loves to toss balls and play with Bobo, the family Goldendoodle. He also loves the trampoline.

“If you were to come over and just watch him,” says his mother, Bekah, “you would not believe me if I told you he was blind.”

Ely, who turns 8 in July, lost his sight when he was 6 due to the rare neurological disorder CLN2 disease, one of the most common forms of a group of inherited disorders known as Batten disease.

Kids with CLN2 disease are missing an enzyme that chews up waste products in the brain. This lack of a cellular “Pac Man” to gobble up the bad stuff eventually leads to the destruction of neurons, resulting in blindness, loss of ability to speak or move, dementia, and death – usually by the teens.

There is no cure for CLN2 disease. But thanks to genetic scientists, neurosurgeons and nurses at CHOC, there is hope for delaying progression of the disease – one that claimed the life of Ely’s older brother, Titus, at age 6 in September 2016 before a cutting-edge therapy became available at CHOC six months later.

Ely Bowman and his older brother, Titus. Both were diagnosed with Batten disease. Titus passed away in 2016 at age 6.

The therapy, Brineura, is a medication that treats the brain via a port under the scalp with a synthetic form of the missing enzyme. CLN2 patients come to CHOC every two weeks for the four-hour infusion to keep the drug working effectively.

Largest infusion center in country

CHOC since has grown into the largest Brineura infusion center in the country and the second largest in the world. Kids from all over the United States have come to CHOC for Brineura treatment since it first was offered in March 2017 following a three-year effort by Dr. Raymond Wang to get the green light for CHOC to become the second infusion site in the U.S.

Dr. Raymond Wang, director of the multidisciplinary lysosomal storage disorder program at CHOC

“When a family has a child with a rare disease,” Dr. Wang says, “and if the South Pole were the only place that was offering treatment, the family would find a way to get there. Those are the lengths that a rare disease family would go to help their child.”

CHOC now has treated 13 Brineura patients, the latest being 3-year-old Max Burnham, whose parents having been making the trek to Orange every two weeks from their home in the Bay Area since Max’s first infusion on Feb. 8, 2021.

CHOC’s Brineura program underscores its growing reputation as a destination for kids with rare diseases.

Recently, CHOC specialists started treating a 3-month-old with Hurler syndrome, another serious and neurodegenerative condition. The family drove across the country because CHOC is the only site in the world that has a clinical trial of gene therapy for their son’s condition.

Because the family will be staying at CHOC for at least through April 2021, a team of three study coordinators — Nina Movsesyan, Harriet Chang, and Ingrid Channa – helped the family get settled in at an Airbnb in Irvine.

“Our case managers and financial coordinators were crucial in getting the infant’s weekly enzyme therapy approved within a week’s time, and our excellent nurse practitioner, Rebecca Sponberg, asked purchasing to procure the enzyme drug for the baby on two days’ notice,” notes Dr. Wang, a metabolic specialist and director of CHOC’s Campbell Foundation of Caring Multidisciplinary Lysosomal Storage Disorder Program.

Dr. Wang says CHOC became an active site for the RGX-111 gene therapy after treating a child from a family in Indio in 2019. Another 14-year-old girl from West Virginia has received the same treatment.

“All of these cases wouldn’t be possible without the awesome teamwork from team members, who all are dedicated to the mission of CHOC,” says Dr. Wang. “I think it’s pretty remarkable that people from all over the country are coming here for clinical care and research studies because of our expertise and what we offer them: hope for their beloved children.”

A true team effort

For the Brineura infusions, which are administered by pediatric neurosurgeon Dr. Joffre Olaya, CHOC metabolic specialists work closely with providers in CHOC’s Neuroscience Institute.

Dr. Joffre Olaya, pediatric neurosurgeon at CHOC

Susan See is nurse manager of CHOC Hospital’s neuroscience unit, where the patients receive their infusion and stay for care afterward.

“We quickly put together a comprehensive program that really treats the patient and family not just medically, but also from an emotional support standpoint,” she says.

Batten disease especially is terribly cruel because its symptoms typically hit just as parents are starting to enjoy their child reaching several developmental and cognitive milestones such as walking and talking.

Untreated, the disease eventually takes all that away.

“What makes them who they are gets rapidly erased,” says Dr. Wang. “As a practitioner, it’s hard. I’m trying to imagine being in the shoes of a parent knowing this is going to happen to their child.”

For Bekah Bowman and her husband, Daniel, the diagnosis for Titus and, two months later, Ely, was like being on a high diving board and being shoved off and belly flopping into the water.

“We had to learn what little control we have in life,” Bekah says.

The Bowmans worked closely with Dr. Wang to get the Brineura clinical trial launched at CHOC.

“When we met Dr. Wang,” Bekah says, “he told us: ‘We don’t have the answers for you right now, but I want you to know we’re going to keep fighting and we’re not going to give up.’”

Brineura families form tight bonds with their team at CHOC, which includes eight nurses who have been trained to care for them: Allison Cubacub, Genevieve Romano-Valera, Anh Nguyen, Melissa Rodriguez, Kendall Galbraith, Annsue Truong, Monica Hernandez and Trisha Stockton.

Some families, including the Bowmans, have moved on from the program at CHOC when Brineura infusions became available near their hometowns. The Bowmans returned to their native Idaho outside Boise in October 2018. Leaving CHOC was difficult.

“That was one of the hardest goodbyes we had to say,” Bekah says.

All Brineura patients receive the transfusions on the same day – something unique to CHOC, See says.

“We learn what is unique about each patient and we become very close to them,” she adds. “It really reminds us why we said yes to nursing. What we thrive on is being able to care for families.”

Quick to action

Laura Millener, the mother of Max, CHOC’s latest Brineura patient, says she selected CHOC for Max’s condition, diagnosed in January 2021, because he needed to be treated right away. She first spoke to Dr. Wang on Jan. 11, and Max got his first infusion less than a month later.

“You could just tell how much he cares about his patients,” Laura says of Dr. Wang.

Max Burnham had his first infusion at CHOC on Feb. 8, 2021

Says Dr. Wang, who has three children ages 10 to 18: “I count [my patients and my families] as my extended family, and I want the best for all of them.”

Laura and her husband, Matthew, a C-5 pilot in the U.S. Air Force, will be relocating to Quantico Marine Base in Virginia this summer from Pleasantville, Calif. Max, who has a 6-year-old sister, Ella, will continue his Brineura infusions at Children’s National Hospital in Washington, D.C.

“I don’t want to leave CHOC,” Laura says. “CHOC has done such an amazing job of making this easier on us. I am so grateful for the team.”

Dr. Wang says the Brineura infusions have made it possible for the patients to maintain meaningful interactions with their parents and siblings – despite having such conditions as, in Ely’s case, blindness.

Ultimately, the goal is for CHOC to be considered for a gene therapy clinical trial aimed at giving brain cells the ability to produce the missing enzyme by itself so Batten disease patients wouldn’t have to receive infusions every two weeks. Dr. Wang says such a trial could happen this fall.

“If there’s anything in my power I can do to help these families,” says Dr. Wang, “I’m going to try to make it happen.”

Learn more about CHOC’s robust metabolic disorders program.

CHOC telehealth visits continue at a rapid pace

As the world surpasses the one-year anniversary of the COVID-19 pandemic, the resulting rapid rise of telehealth continues to propel forward in 2021, with CHOC patients consistently reporting a 90-plus percent satisfaction rate in surveys, hospital officials say.

Virtual visits with a CHOC provider via a smart phone, tablet, or computer not only are here to stay, but are expected to continue growing at a rapid pace – not just in Orange and surrounding counties, but nationally and globally.

The rapid growth and acceptance of telehealth is a definite sign that consumers want easier access, convenience, and comfort as they seek medical care,” says Dr. Michael Weiss, vice president of population health. “CHOC is committed to providing the highest quality and service to fulfill these needs.”

Kathleen Lear’s son, Matthew, 18, was diagnosed with intractable epilepsy when he was 6 and the last 12 years have been a non-stop roller-coaster, she says.

In mid-February 2021, Matthew became the first epilepsy patient at CHOC to undergo a procedure called Deep Brain Stimulation (DBS), in which electrodes were placed in his brain to help reduce his seizures by sending electrical currents to jam his malfunctioning brain signals. In another first, CHOC recently conducted DBS on a patient with the movement order dystonia.

Kathleen and Matthew recently have had neurology and hematology telehealth visits with Dr. Joffre Olaya and Dr. Mary Zupanc, as well as a consultation with Dr. Antonio Arrieta and Dr. Loan Hsieh.

“I think it was amazing that we even could have a virtual neurology visit,” Kathleen says. “The doctors were able to assess a lot by watching Matthew walk and run and touch his finger to his nose.”

Kathleen says the telehealth session was especially helpful because her husband is working from home during the pandemic and he, too, could participate.

“It was really nice,” she says.

Growth projections

According to Fortune Business Insights, the global telehealth market size was valued at $61.4 billion in 2019 and is projected to reach $559.52 billion by 2027, exhibiting a compound annual growth rate (CAGR) of 25.5 percent during the forecast period.

The U.S. telehealth market size was valued at $9.5 billion in 2020, up a whopping 80 percent over 2019, and is expected to exhibit a CAGR of 29 percent between 2020 and 2025, according to market research firm Arizton.

Quick pivot

At CHOC, a lot of teamwork was necessary for the quick pivot that began in the early days of the pandemic, says Lisa Stofko, CHOC’s telehealth manager.

“There is a difference between a two-way video and telehealth,” Lisa says. “We are committed to making telehealth a seamless experience for both patients and providers, and ensuring that it replicates the safe, quality care patients are used to receiving in person.”

The information services department, Lisa says, worked feverishly to get technology set up so clinicians could use video conference software that came with extra layers of protection that allowed them to safely consult with patients virtually.

Training videos were delivered to more than 700 providers so they could replicate the in-person visit as closely as possible, Lisa says. And a 20-member steering committee was established from key stakeholders from across CHOC’s health system — including administrative executives and physicians — to further improve the telehealth experience and capabilities at CHOC.

In December 2020, Dr. Robert Hillyard, CHOC neonatologist, and Dr. Kenneth Grant, CHOC pediatric gastroenterologist, began serving as co-medical directors of CHOC’s telehealth program, while each retaining existing clinical responsibilities.

Some statistics

Dr. Weiss tracks telehealth visits daily.

From March 2020 through April 2020, CHOC telehealth visits zoomed to 14,457, from 2,233 prior to the pandemic, he says.

Since the pandemic began through early February 2021, CHOC telehealth visits totaled 95,757. The average number of telehealth visits per month during COVID-19 have remained in the 8,500 range.

Telehealth visits at CHOC have grown dramatically in both primary and specialty care.

In January 2021, the most visits (370) in CHOC’s Primary Care network were recorded at Orange Primary Care, followed by Pediatric and Adult Medicine (338), Clinica Para Ninos (286), Breathmobile (176), Los Alamitos Pediatrics (149) and Boys and Girls Clinic Santa Ana (92).

In January 2021, the most visits (1,498) in CHOC’s Specialty Care network were recorded at Providence Speech and Hearing Center, followed by endocrinology (1,017), mental health (991), gastroenterology (893), neurology (481), pulmonary (450), the Thompson Autism Center (407), and outpatient rehabilitation (301).

Kathleen says she looks forward to continuing Matthew’s treatment at CHOC – in person when possible, and virtually, too. She finds telehealth visits especially useful when doctors want to go over test results.

“There’s definitely a time and a place for it,” Kathleen says. “And I just feel so privileged to have CHOC so close to us.”

Learn more about telehealth at CHOC

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MRI-Guided Laser Ablation with Stereotactic Assistance Targets Epilepsy, Tumors

Laser interstitial thermal therapy (LITT), or laser ablation, is among the latest advancements in minimally invasive neurosurgery, allowing surgeons to reach difficult areas of the brain — and offering less risk to patients at the same time.

“Instead of performing a craniotomy, which entails making a large incision and opening up the skull, we place a probe through a small hole in the skull a few millimeters in diameter,” says Dr. Joffre Olaya, pediatric neurosurgeon at CHOC. “Then, under MRI visualization, we deliver heat to the specific area, which destroys the abnormal tissue. Laser ablation is especially useful in patients with small seizure foci or tumors, particularly if they are deep.”

Dr. Joffre Olaya, pediatric neurosurgeon at CHOC

The benefits this minimally invasive approach provides to patients are especially welcoming. “For a craniotomy, patients will be in the hospital for three to five days, in the ICU most likely for a day or two, and they’ll experience discomfort from the skin and muscles on the head,” Dr. Olaya says. “With laser ablation, patients typically go home within a day or two and recover pretty quickly. They also experience less blood loss, pain and side effects overall. Also, laser ablation doesn’t prevent patients from having another procedure. If the tumor is still growing or the seizures are still continuing after ablation, I can go back and perform another laser ablation or a craniotomy.”

To increase surgical precision and accuracy when ablating brain tumors, deep lesions and tissue in the brain where seizures occur, Dr. Olaya employs a ROSA™ (robotic stereotactic assistance) robot.

“We obtain preoperative imaging studies and load those into the ROSA system, which allows us to plan the entry point and trajectory so we can precisely place the laser. This precision helps us to not only locate and effectively ablate our target, but avoid hitting blood vessels or causing unintended damage to surrounding tissues,” Dr. Olaya says. “We were the first pediatric center on the West Coast to have this technology. We use ROSA for multiple conditions, including patients with epilepsy and oncology patients with tumors.”

ROSA’s precision also helps minimize some risks commonly associated with surgery. “ROSA is an amazing tool that yields many benefits for our patients, including less time under anesthesia in the operating room,” Dr. Olaya says. “It also reduces blood loss and risk of infections.”

Although CHOC is at the forefront utilizing the latest technologies to best treat its patients in a minimally invasive manner when possible, Dr. Olaya says CHOC’s team approach to patient care is what sets it apart from other centers in the region.

“I’m really excited that CHOC is investing in this newer technology and it’s available here to provide to our patients, but our team mentality and how well we work together is crucial. Our epileptologists, radiologists, neuropsychologists, all of us really work well together as a team to identify the best candidates for this technology and to provide the best outcomes for our patients.”

Our Care and Commitment to Children Has Been Recognized

CHOC Hospital was named one of the nation’s best children’s hospitals by U.S. News & World Report in its 2020-21 Best Children’s Hospitals rankings and ranked in the neurology/neurosurgery specialty.

Learn how CHOC’s neuroscience expertise, coordinated care, innovative programs and specialized treatments preserve childhood for children in Orange County, Calif., and beyond.

Wired for hope: deep brain stimulation for dystonia

Every morning when she awakes, Sydney Amato begins her daily battle with her body.

If she’s lucky, the 16-year-old will have gotten a handful of hours of uninterrupted sleep – dreaming, perhaps, of doing what most healthy kids her age take for granted:

Hanging out with friends. Going to school. Learning to drive.

Because of a neurological condition called dystonia, Sydney, who is in excellent cognitive health but speaks and walks with some difficulty, suffers from involuntary and near-constant contraction of muscles in her neck, arms, legs and trunk.

Sydney with her father, Louis

Her mind is unable to control the painful jerking that makes most of her body twist and go rigid, her muscles moving out of normal sequence.

Born a right-hander, she can feed herself with some struggle using her left hand. She wants to dress and put on makeup herself, but those normally simple tasks become lengthy ordeals.

“My body fights me all the time,” says Sydney, trying to distract herself in her hospital bed by watching an old episode of “Keeping Up with the Kardashians.” Listening to her favorite music – Ariana Grande, Lauren Daigle, Drake – can only temporarily transport Sydney away from her debilitating condition.

“She knows what she wants to do,” says her father, Louis. “But her body won’t let her.”

Specialists at CHOC are working hard to change that.

A first for CHOC

On Aug. 14, 2020, a team led by Dr. Terence Sanger, a physician, engineer, and computational neuroscientist who joined CHOC in January 2020 as its first chief scientific officer, and Dr. Joffre E. Olaya, CHOC’s functional restorative neurosurgeon, implanted several temporary electrodes into Sydney’s brain.

Dr. Terence Sanger, a physician, engineer, and computational neuroscientist and CHOC’s chief scientific officer

The surgery marked the first time a patient with a movement disorder at CHOC underwent a procedure called deep brain stimulation (DBS).

Working in perfect harmony as a team, Dr. Sanger and Dr. Olaya performed the first stage of a three-stage surgery on Sydney. As the surgeon, Dr. Olaya placed the leads following advice from Dr. Sanger, the neurologist, where they should go.

In the procedure, millimeter-thick electrodes were precisely positioned into the basal ganglia region of Sydney’s brain – about three inches deep. The surgery involved the use of the ROSA Robot, the same tool that has been used during brain surgery on epilepsy patients at CHOC since 2015.

Dr. Joffre E. Olaya, CHOC pediatric neurosurgeon

Considered one of the most advanced robotized surgical assistants, ROSA includes a computer system and a robotic arm. It’s a minimally invasive surgical tool that improves accuracy and significantly reduces surgery/anesthesia time.

The ROSA Robot helped with implanting and targeting the electrodes, and a portable operating-room CT scanner confirmed their position.

Turning down the volume

DBS is designed to ease Sydney’s condition by sending electrical currents to jam her malfunctioning brain signals.

Think of turning down the volume on your car radio.

“Nobody really understands the cause of dystonia,” Dr. Sanger explains, “but there’s probably too much electrical stimulation going on in the motor areas of the brain. We’re trying to calm down that extra noise.”

Although DBS dates to the 1960s, it wasn’t until the 1980s that the modern era of using it to treat adult patients with tremor and Parkinson’s disease began.

In 2000, Dr. Sanger, working with engineers, data scientists, neurosurgeons, and others, began implanting electrodes in pediatric patients.

Instead of the established method of placing the leads at predetermined sites and hoping they worked, Sanger and his team, just as they did in Sydney’s case, placed temporary leads to best assess where they should go permanently based on patient response.

In 2016, Dr. Sanger began honing DBS to treat children with dystonia. Before the surgery on Sydney, Dr. Sanger had performed DBS on 26 children using the same three-stage technique. He says 80 percent of those children have seen successful results.

Early signs

Sydney began showing symptoms of dystonia – tremors in her hands — when she was 5 ½ years old.

A year later, she was using a wheelchair. She had her first brain surgery at age 7.

Since then, “she’s been all over the U.S.” seeking the right treatment for her condition after several setbacks, says her father.

But her condition was not improving.

Early this year, a neurologist in Kansas City, Mo., recommended that Sydney see Dr. Sanger.

“I asked him, ‘If Sydney was your kid, where would you go?’ Louis Amato recalls. “He said, ‘Hands down, Dr. Sanger.’”

The COVID-19 pandemic pushed Sydney’s surgery to mid-August.

Sydney already had two electrodes in her brain that were only partially working when she came to CHOC in early August for surgery.

After two extensive run-throughs with their team, Dr. Sanger and Dr. Olaya, in a six-hour procedure that at one point had nearly 20 people in the operating room, implanted more electrodes to give her a total of nine.

On Thursday, Aug. 20, six days after Sydney’s surgery, Dr. Sanger stopped by her room at CHOC Hospital. The room was decorated in purple, Sydney’s favorite color.

Dr. Sanger greeted her as CHOC staff members, joined by members of Sanger Lab, which conducts research in pediatric movement disorders, prepared to have Sydney walk back and forth down a hallway while connected to electrical equipment programmed to record signals in her brain and muscles.

A thick coil of multicolored wires snaked from under a large white bandage covering Sydney’s head. Extending about 6 feet, the wires were plugged into specialized recording equipment controlled by Jennifer MacLean, a pediatric nurse practitioner whose job was to manipulate the strength of electrical charges affecting the four points of contact on each electrode.

The goal: determine which charges worked best and on which electrodes.

“It could have turned out that the DBS procedure made no difference,” Dr. Sanger says. “But we’ve seen a very good response in Sydney.”

For example, her once mostly useless right hand was working much better.

“It gives you goosebumps,” Louis Amato says.

After taking a bite of a veggie burger and sipping some water, Sydney started to walk.

Following her were seven CHOC and Sanger Lab specialists.

“Go nice and slowly,” Jennifer told Sydney. “You’re going too fast for us!”

Perhaps Sydney was anxious to get back to riding Tigger, a quarter horse, in her hometown of Carthage, Mo. She has been riding him for six months.

Sydney is eager to get back to riding her favorite horse, Tigger.

“Her balance isn’t bad on the horse,” says Louis Amato.

Sydney also loves to tan by her pool and swim.

What she wants most, however, is to be freed from her body so she can return to school and do what most teens enjoy.

“It’s stressful,” says her mother, Angie. “She has a lot of friends her age, but she can’t do a lot of the things they do. She has her days when she can get really upset.”

Now, however, working with Dr. Sanger, Dr. Olaya and the entire team at CHOC, the Amatos are more optimistic than ever.

“We’re hopeful that this is going to be a big life-changer for her,” Angie Amato says. “That would be the best thing that could ever happen – better than winning the lottery.”

‘The A Team’

After crunching numbers for a week to assess which of the nine electrodes proved to be the most effective based on how Sydney responded to varying degrees of electrical currents, Dr. Sanger and his team settled on four electrodes that were permanently used to treat her condition – three new ones, and one existing one.

The team performed this second surgery on Sydney in late August.

In the third and final surgery, successfully completed in early September, a rechargeable generator that powers the DBS leads was implanted in Sydney’s chest.

“As we get better and better at this,” says Dr. Sanger, “and as the technology progresses, we’ll be able to do this on kids who are less sick than Sydney.”

Dr. Sanger and Dr. Olaya are poised to dramatically improve the lives of many more patients like Sydney at CHOC.

“I’m really excited that we will be doing more of these procedures to help pediatric patients with movement disorders and significantly improve their quality of life,” says Dr. Olaya. “I look forward to continuing to provide this type of personalized care.”

Angie and Louis Amato say Sydney has never gotten this much special attention during her 11-year-plus medical journey.

“Here at CHOC,” Louis Amato says, “we feel like we’re with the A Team.”

Says Sydney: “I’ve never felt this much confidence and this good about treatment before.”

Learn more about deep brain stimulation (DBS) surgery at CHOC.

ROSA Robot Assists in CHOC Patient’s Successful Epilepsy Surgery

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 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.

CHOC Children's

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.

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.

“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.”

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.