Shanley Stuteville, 25, has been a lifelong patient at Cook Children’s after she was diagnosed with epilepsy at 3 years old. When she was 19, she underwent life-changing lesionectomy surgery and hasn’t had a seizure since 2020. This year, she decided to give back to the community of patients at Cook Children’s while also pursuing her dream to help others.

Shanley was first brought to Cook Children’s by ambulance after her first seizure. She had many neurology appointments with Howard Kelfer, M.D., who became her primary care doctor.

When epilepsy surgery became an option, she also started seeing Scott Perry, M.D., pediatric epileptologist and Medical Director of Neurology for Cook Children’s. Cook Children’s has a Level 4 Epilepsy Center.

“I can’t imagine what things would’ve been like if I hadn’t had Cook Children’s on my side throughout this journey. I truly can’t say enough about how incredible the doctors and staff have been to me since I was a child,” Shanley said.

Experiencing testing in Cook Children’s Epilepsy Monitoring Unit

To pinpoint where her seizures stemmed from in the brain, Shanley stayed in the Cook Children’s Epilepsy Monitoring Unit (EMU).

“I knew when I first met Shanley that I could help her,” Dr. Perry said. “Her focal seizures were clearly coming from a single area of abnormality in her brain that I felt confident we could safely remove.”

Staying a few days in the EMU can be scary and Cook Children’s does all they can to make the experience feel as safe as possible. Shanley has a loving support system of family and friends, which makes all the difference in experiencing life with seizures, the side effects of seizures and medications, and the limitations that epilepsy can bring.

“Whenever I would have to stay up all night prior to the EEG testing, my family would make a fun themed party out of it and we would stay up watching movies and playing games. My friends also came to visit and everyone’s support made all the difference for me,” Shanley said.

Having epilepsy surgery

Shanley went through necessary testing to be considered for epilepsy surgery of a lesionectomy, which removes a lesion or abnormality in the brain.  For a long time, she thought she would never be a candidate so when she found out she was, she and her family were so grateful they had finally found hope to control her seizures.

“I had never been so confident that I wanted to do something in my entire life. To have a chance of recovering from epilepsy was incredible and something I couldn’t pass up,” she said.

The surgery process went smoothly for Shanley and even Dr. Perry noticed how comfortable she felt about the surgery.

“I recognized immediately her engagement in the surgical process and how she could change how people view epilepsy surgery when she shared her plans to create a children’s book about visiting the epilepsy monitoring unit,” Dr. Perry said. “The book she and her aunt created was amazing.”

How epilepsy surgery changed Shanley’s life

Shanley has been seizure-free since July 2020. It has been a wonderful four years for her with some challenges as well. Deciding to slowly reduce epilepsy medication after brain surgery is common for a lot of people and she experienced side-effects like anxiety as well as learning how to suddenly live her life without epilepsy anymore. She had to grow her inner confidence again and learn how to live with how her brain worked differently.

Even with the challenges, she’s so glad she chose to have surgery and experience the transformation it has made in her life. In fact, she is currently studying and plans to graduate with a Master’s degree in psychology in May 2025.

 “To see her all these years later, seizure-free and living out her own dreams means everything to me,” Dr. Perry said. “Personally, it gives meaning to what I do daily. But to then know she is pursuing psychology is even more impactful given how often children with epilepsy need the services of psychology. I can only hope we get Shanley to come back to work for us.”

Shanley’s love of art and donation to the “neuro art collection”

Shanley has been creating art since she was very young. Her favorite kinds of art include mixed media illustrations with colored pencils and gouache paint, or digital art like the piece she created for the “neuro art collection” at the Jane and John Justin Institute for Mind Health which was started by Dr. Perry.

“Shanley’s donation to the neuro art collection is exactly what I envisioned when my wife and I first commissioned the original art collection. I knew that the neuroscience community was full of artistic and creative people. I knew their art could inspire others and I hoped that my own patients would one day give back to our collection. Shanley is the first former patient to contribute her talents to our collection and the first former patient to benefit all the patients that come behind her,” Dr. Perry said.

Shanley’s intention with the piece she’s donating is to give people the feeling of hope. With her experiences living with epilepsy, her surgery and all of the ups and downs of life, she’s always tried to look for the “rainbow after the storm” and hopes to convey that in her art.

Hope for the future and advice for people battling epilepsy

With her goal of getting a degree in psychology next year, Shanley plans to have the opportunity to work with children who have chronic neurological disorders like epilepsy. For a long time, doctors have only treated epilepsy symptoms, not the emotional, social and psychological challenges that living with epilepsy creates. She also wants to help people who’ve had challenges readjusting to life after their long-term disorder is suddenly gone.

Shanley thinks it’s important for people battling epilepsy to remember they are not their disorder. Living with epilepsy and experiencing surgery has helped Shanley become even more empathetic. She encourages people to look for the positive and for opportunities wherever they can, to lean into what they love and to remember that they aren’t alone.

By Heather Duge

Valerie Shorten, BSN, RN, and her son, Marquis Shorten, are no strangers to overcoming obstacles. Each one has led them to where they are today.

Marquis faced a life-changing diagnosis at Cook Children’s in 2022 – the same hospital where his mother Valerie works. She was determined to become a nurse after her brother was killed.

“I always thought about what I could have done to help him had I been there,” Valerie said. “That’s when I knew nursing was my calling.”

Nursing Journey

In 2011, Valerie found out about an open position at Cook Children’s – a place she had visited a few years before when Marquis had a minor injury while playing with his brother.

“I remember how caring everyone was and thinking with three boys it was probably not the last time I would be there,” Valerie said.

After 15 months of working in Food Services, she applied for a secretary position in the Neonatal Intensive Care Unit (NICU). In May 2021, she graduated from nursing school and started as a nurse resident at Cook Children’s -- 10 years to the day of her first day in the cafeteria. She rotated through all the ICUs and the emergency department in one year. Now she is a nurse in the Cook Children’s NICU.

“I know that no one chooses to come into this hospital,” Valerie said. “You never know what a person is going through, so I make sure I always give the kind of treatment I would want for my child.”

Shocking Diagnosis

In April 2022, Valerie was in the middle of her nursing shift when she received a text from Marquis that read “My spine hurts.” She told him to take ibuprofen since she thought it could be related to his running.

“Marquis is a runner and was No. 1 in the district,” Valerie said. “He was slated to run in the regional meet to see if he would qualify for state. I thought the pain could be from a pulled muscle or running injury.”

Valerie told him to rest and let her know if it worsened. Eventually, Marquis drove himself to the ED at Cook Children’s and at that point could not feel his right leg.

“I met him at the ED but didn’t think it was anything too severe,” Valerie said.

An MRI revealed a spinal epidural hematoma, which is like a pooling of blood on the spine, and Marquis underwent emergency surgery. If too much time passed, Marquis could have become paralyzed.

“Everything was a blur and I remember being overly emotional as Marquis continued to lose the feeling in his legs,” Valerie said. “But I knew he was at the right place.”

Marquis was quickly wheeled to the operating room where Medical Director of Neuro-Trauma, and pediatric neurosurgeon Daniel Hansen, M.D., removed the large blood clot that was compressing the spinal cord.

Recovering Physically and Mentally

Valerie became anxious thinking about Marquis's mental state when he woke up and realized all he worked for was not going to happen that year at the regional track meet, if at all. 

“A nurse pulled his father, DeMario, and me aside and told me that when Marquis woke up, he asked when he would leave that day because he had a track meet in a few days,” Valerie said. “The real pain came when all the times were posted from the race he missed.”

Valerie and DeMario helped Marquis work through his emotions but did not let him stay down too long.

“I told him he could decide to lay there and be sad or decide what’s going to happen next,” Valerie said. “My life motto is that you are the writer of your story.”

Nurses realized how hard it was for Marquis to face the reality that he missed the regional meet and was not sure what running would look like in the future. During the 10-day stay in the Pediatric Intensive Care Unit, Marquis says the nurses went above and beyond to bring him comfort. On a particularly hard day, the café was out of Chick-fil-A milkshakes, so the nurses gathered all the supplies and made him one.

“They did everything I needed before I even asked for it,” Marquis said. “They fixed my pillows a certain way, brought me the Gatorade flavor I liked with a straw, broke up pills because I couldn’t move my neck to swallow and positioned my toes for me when I couldn’t move them.”

Back on Track

Valerie says everyone was surprised at how fast Marquis progressed. Throughout his healing journey, he used a brace, walker and wheelchair. After lots of hard work in physical therapy, he was cleared to jog four months after surgery and in January 2023 ran in his first race since surgery at Texas Tech University.

“My parents kept me going,” Marquis said. “My track coaches Jesse Heard and Sa’Donna Thornton also were there for me. Coach Heard gave me a love for track and all he instilled in me is a big reason why I treat everyone with kindness. He has sacrificed countless hours just to help me succeed. Coach Thornton played a huge part in helping me gain my confidence back and keep my positive outlook on the situation. I knew God had a plan and it would turn out OK.”

A Lifelong Dream Come True

Marquis says coming back from a major surgery has only made his passion for running stronger, and he wanted to prove to everyone he was just as good. He has accomplished that and more. When he graduated high school in May 2023, he received the Optimist Award. This fall, Marquis will attend Texas Christian University on a full-track scholarship – a goal he set for himself at only 10 years old.

“Marquis decided in fourth grade that he would one day attend TCU,” Valerie said. “Jokingly, I expressed how his father and I did not budget for TCU. At the time, our fourth grader looked at me on the car ride to school and said, ‘Don't worry, I'm going to get a scholarship.’ His dreams came true.”

“The most gratifying part of my job is seeing kids through their illness to the other side,” Dr. Hansen said. “For Marquis, that means a life that is everything he has always wanted.”

“I was blown away even then by the hospital and by the people here,” Dr. Donahue said.

Twenty four years later, Dr. Donahue will retire from full-time practice on Dec. 15, leaving behind a legacy of expert surgical skill, innovation, continuous improvement and compassionate care.

“Dr. Donahue has really been a pioneer in bringing pediatric neurosurgical care to the children of Fort Worth, North Texas and beyond,” said James Cunningham, M.D., executive vice president and chief medical officer at Cook Children’s Medical Center. “He came to Fort Worth after an impressive training resume and brought with him a keen intellect, advanced surgical skills, and a sense of innovation in the development of new and improved care for children.

“While his accomplishments during his career have been impressive, I believe that Dr. Donahue will be remembered most for his dedicated and compassionate care for the children and families he served,” Dr. Cunningham said. “His work ethic, his mentorship and his collegiality will be sorely missed on a daily basis at Cook Children’s, but I have no doubt that David will continue to find ways to contribute to the health and well-being of our community.”

Dr. Donahue, neurosurgeon at the Jane and John Justin Neuroscience Center at Cook Children’s Medical Center, turned his eyes toward Texas at the urging of fellow neurosurgeon Jack McCallum, M.D. Ph.D., whose adult neurosurgical practice, with the Southwest Neurosurgical Group, was pulling double duty at the time by taking pediatric cases when needed. As the demand for pediatric neurosurgical interventions grew, it became clear that the addition of a full-time pediatric neurosurgeon was imperative to meet the neurological health needs of children in Fort Worth and the surrounding region.

“I wouldn't be here if Dr. McCallum hadn’t invited me to come,” Dr. Donahue said. “That’s how it all started. The good will of that adult neurosurgical group to take on the care of children.”

During his tenure, Dr. Donahue has led the development of the pediatric neurosurgical program at Cook Children’s, growing it from a single surgeon to a nationally recognized team of four surgeons and a number of medical professionals. This growth has led to the addition of innovative technology such as iMRI-guided surgery and the use of endoscopy and stereotactic EEG. Dr. Donahue is quick to credit these advancements at Cook Children’s to his associates while taking pride in his role in assembling the team.

“He brought a lot of things here as a surgeon,” said M. Scott Perry, M.D., epileptologist and medical director of Neurology and the Genetic Epilepsy Clinic at Cook Children’s. “When you talk about the more minimally invasive approaches of laser ablation and stereotactic EEG, he’s come along the whole way, which is why it’s great that he’s a continual learner. He was always willing to learn the next thing and implement it.”

Humble At Heart

Austin Roberts was the recipient of Dr. Donahue’s exceptional care, but it was his humility that made way for a collaborative effort that saved her life.

When Roberts suffered multiple life-threatening complications, including meningitis, following the surgical removal of a brain tumor when she was 6 years old, Dr. Donahue stepped in with a treatment plan that helped her recover fully. Two years later, a seizure revealed the tumor had returned. This time it was imperative to remove the entire tumor to prevent its regrowth. The surgery was extremely risky and could only be safely accomplished with the use of iMRI technology, which Cook Children’s did not have at the time.

Together with the Roberts family, Dr. Donahue reached out to a surgeon using iMRI technology at UCLA Health and arranged for Roberts to have a second surgery to remove the tumor there.

“We are deeply appreciative of Dave’s willingness to partner with the team at UCLA Medical Center as our story could have been very different without what they had to offer with the iMRI,” Carol Roberts, Austin’s mother, said. “His humility saved my daughter’s life.”

But Dr. Donahue wasn’t done taking care of Austin.

Once again, Austin developed meningitis after returning home to Fort Worth. For a second time in her life, Dr. Donahue’s treatment plan and care helped her overcome the life-threatening complication and, at the age of 26, she remains cancer free.

“Next to Jesus, he’s the man that saved my life,” Austin said. “I owe that to him and, yes, to his humility, but also to his resiliency and his honesty. His kindness was so comforting to me and my parents through that whole journey.”

The Roberts became life-long friends with Dr. Donahue and his family, and joined with him and others in a campaign dubbed the Austin Roberts Refuse to Lose Fund to raise money to bring the iMRI technology to Cook Children’s.

“David Donahue was so very instrumental in the Refuse to Lose campaign because he knew exactly what he needed as a neurosurgeon,” said Jennifer Johnson, assistant vice president, Jewel Charity. “The technology was changing so rapidly that, by the time we had raised all of the money, technological advances were better and we were able to get the best imaging technology available.”

Country music legend Garth Brooks lent his voice to the effort by performing a private benefit concert at Bass Performance Hall at the close of the two-year campaign. Playing alongside Brooks that night was Roberts’s father, Dan, also a country music singer and songwriter. In the end, the Austin Roberts Refuse to Lose Fund raised $4.5 million of the $10 million needed for the technology. Because of their work and Dr. Donahue’s focus on his patients’ needs rather than his own acclaim, kids receiving care at Cook Children’s now have access to the same technology that saved Roberts’ life.

“The thing that's unique about pediatric neurosurgery is that you're trying to help people and you're also challenged intellectually,” Dr. Donahue said. “There’s so much happening in the world of science and neuroscience research. This hospital is involved in that, which is really one of the reasons I'm glad I'm here. All those things make it a really good thing to be doing with one's time.”

Patients Sing Praises

While Dr. Donahue’s list of professional accomplishments are many, none carry more weight than the personal praise of his colleagues and patients.

“To the kids he’s cared for, he’s meant a cure from epilepsy for many of them,” Dr. Perry said.

That’s true for Cole Pettit, 22, who battled epilepsy from the time he was a young child into his teens. The condition severely impacted his quality of life and ability to function in school. Medications left him in a fog much of the time. Most doctors said surgery wasn’t an option, until Dr. Donahue and the neurosciences team at Cook Children’s gave them hope.

“It wasn't a hundred percent guarantee,” said Kelley Pettit, Cole’s mother. “There was still some reservation. They couldn't really see super clear where the problem area was, but in talking with the team of doctors, including Dr. Donahue, I felt like there was a chance. And that's the first time that we had heard that in a long time. It was really kind of the first glimmer of hope.”

At the age of 15, Cole underwent surgery performed by Dr. Donahue’s steady hands. He has been seizure free since that day.

“It completely changed the entire trajectory of his life,” Cole’s mom said.

In addition to graduating from high school in the top half of his class—a feat once thought impossible for him—Cole graduated in August from Texas Tech University with a degree in kinesiology.

“Dr. Donahue is an incredible person, his career aside,” Cole said. What he's done for me is incredible. The opportunities I've been given and made available to me by the blessings he's given me are just unreal. I wouldn't have asked for anyone different to have been my surgeon.”

Even when his patients faced difficult outcomes, Dr. Donahue stayed by their side offering as much comfort and support as he did medical expertise.

Charlie Bourland was born prematurely with a chromosome abnormality and suffered from infantile seizures. At the age of 4, he became a patient of Dr. Donahue’s when he underwent surgery to remove a brain tumor. During one particularly difficult hospital stay, Dr. Donahue made a point to check on Charlie after learning he had been admitted. Together with his wife, Dr. Donahue made a special visit to Charlie’s hospital room to meet with the Bourland family and discuss his thoughts on Charlie’s prognosis.

“This was the week before Christmas and I am sure they had somewhere they were supposed to be together,” Karen Bourland, Charlie’s mom, said. “He made us feel important and loved. He made us feel we could get through the terrible times ahead because of all we had already been through together. He made us feel safe.”

Bourland remembers how Dr. Donahue cried with their family that night and comforted Charlie’s siblings. Charlie passed away a little over a year later in 2015 at the age of 15.

“Terrible things can happen to children, despite everyone doing their best for the child,” Dr. Donahue said. “It's just a real tough thing that you sometimes can never do well enough. You always want to do better. That's one of the challenges of this job and a very great stressor.”

Dr. Donahue credits his wife for helping him manage the intensity.

“I'm married to a wonderful pediatric nurse,” he said. “I don't know anybody who could put up with me, number one, but also who could manage these sorts of stresses as well as she can. She has been a real stabilizer for me."

In December, Dr. and Mrs. Donahue will celebrate 41 years of marriage. They have three sons and five grandsons.

Lifelong Learner

Most consider retirement the end of their working life but, always the learner, Dr. Donahue sees it as a new beginning. His post retirement plans include completing a master’s degree in public health and channeling that into advocating for the underserved.

“I think it'll take me a year or two to get that degree because I'm certainly not going to go full time,” he said. “I'm going to have time for my family and my grandchildren and to do some other things that I’ve wanted to do and haven’t had time to do.”

Some of those other things include travel, photography, learning German and honing his newest craft—bread baking.

“He’s baking bread every day,” Mrs. Donahue said. “I now have a pantry full of different kinds of flour. He loves to cook anyway so this has been kind of his thing to try different types of bread and make it for friends and neighbors.”

Even with all of these new endeavors, Dr. Donahue says he’ll still miss the relationships he’s made while doing a job he loves.

“I’ll miss the people, but I really won’t miss staying up all night and worrying about things the way I do now,” Dr. Donahue said. “I don’t think I’ll miss the visions of pain and suffering, but I will miss the children. I will miss the excitement of being in the operating room.”

In like manner, Dr. Donahue is sure to be missed by his colleagues, the staff at Cook Children’s and his patients and their families, but his imprint on the hospital and pediatric neurosurgery in Northeast Texas will remain indelible. His legacy of surgical excellence built on a foundation of compassion, attentiveness, humility and continuous improvement will continue to drive and shape the neurosurgical team at Cook Children’s for years to come.

Christian Englert was born with genetic hand tremors, like many of his family members. The tremors were never an issue, especially when he was drumming or doing school work … until he turned 15 when they helped diagnose a rare brain tumor.

At his annual physical, Christian mentioned his worsening tremors to his doctor and was quickly referred to a neurologist. As a family, they decided to go ahead with an MRI for peace of mind. Christian’s hand tremors had been the only noticeable change so there wasn’t an excessive cause for concern.

“I was with Christian at the very first MRI that we thought was just going to be routine,” Christian’s mother Shanna Englert said. “They had told us they weren’t going to be using contrast, but they came in toward the end and said they wanted to just go ahead and do it. At that point, my mommy alarm was already going off because it wasn’t what we were told originally.”

Within a few minutes, the MRI started again but Shanna was called out of the room. Christian’s neurologist was on the phone. He explained he wouldn’t normally give this news over a phone call, but the urgency was critical. There was a mass on Christian’s brain.

“There was a six week period between the MRI and Christian’s original physical,” Christian’s father Martin Englert said. “At one point we were just about to cancel the MRI because no one thought it would show anything serious. What if we hadn’t done the MRI? We could have lost him.”

The following hours after that phone call became a blur, according to Shanna. They immediately went to Cook Children’s for severe hydrocephalus, a condition caused by the tumor and resulted in too much fluid and pressure on the brain.

“When we got to the hospital everyone was confused because he didn’t have any symptoms. He wasn’t tripping, no headaches and no nausea. There was nothing on our radar saying this MRI could show something so there was no preparation on our end,” Shanna said. “I went from picking him up at school at three o’clock to him being in brain surgery the next day. His surgeon called him a ticking time bomb.”

Christian went into surgery the following morning to relieve the fluid and pressure, and take a biopsy of the tumor. Ten days later, he was diagnosed with Pineal Parenchymal Tumor with Intermediate Differentiation (PPTID), a rare form of cancer with both malignant and benign cells with only five prior diagnosed cases in the U.S. since 2000.

“The list of possibilities was so long. As a mom, that list overwhelmed me more than the actual cancer diagnosis because you have all these dreams and plans for your child,” Shanna said. “What is life going to look like after treatment? There were just so many unknowns, and as a parent to hear all of this, it was just like all these dreams came crashing down.”

With so few cases to study, Jeffrey Murray, M.D., medical director of Neuro-Oncology at Cook Children's, and John Honeycutt, M.D., Cook Children's medical director of Neurosurgery, had to research the production of a plan to safely shrink and remove Christian's tumor.

“We began creating a treatment protocol after review of the medical literature and discussions with colleagues across the country,” Dr. Murray said.

Dr. Honeycutt performed Christian’s initial surgery to relieve the pressure on his brain, as well as the tumor removal surgery three months later.

"A tumor in the pineal gland is an unusual area in the brain because it’s in the center. It’s more difficult to get to and it has a lot of important structures,” Dr. Honeycutt said. “We went in with an endoscope and navigated down to the bottom where there’s a membrane and poked a hole in it. It created a detour for the spinal fluid called an ETV.”

Christian later underwent additional surgeries to remove the tumor, insert and remove his port for chemotherapy and realign his right eye, which occurred as a result of his prior brain surgeries.

Six months later, after four total surgeries, two rounds of chemo and 30 treatments of radiation, Christian was deemed to have no evidence of disease. To this day, the tremors aren’t related to his tumor but acted as a signal that something had changed.

“Even though we’re now a part of a group that we didn’t want to be in, it’s turned out to be more of a joyful mission. Cook Children’s has become a part of our family. Dr. Murray, Dr. Honeycutt, nurses and staff that support them are people that are a part of our lives,” Martin said. “When we walk in there it does feel like a triumph, but it also feels like we have an opportunity to bring hope to the folks there. We know there are some stories that don’t end as ours did. We want to continue to be a light for others.”

Christian has now been in remission for four years. He still loves to play the drums in his spare time and has just started his sophomore year at a local university. He remains an advocate for childhood cancer awareness and the Make-A-Wish Foundation.

Ryan, 10 years old, wondered if he would ever get the chance to play the game he loves so much after a rare neurological movement disorder call dystonia changed his young life. He went from being a rough and tumble multi-sport athlete to using a wheelchair to get from class to class in his elementary school.

Ryan became the 100^th patient at Cook Children’s to receive deep brain stimulation(DBS) surgery on Monday, Nov. 30, 2015. The surgery was performed by John Honeycutt, M.D., Cook Children’s medical director of Neurosurgery.

Nearly two year later, it’s hard to imagine this little boy once struggled to walk or hold a pencil in his right hand. The successful DBS surgery has brought him back to the normal the Conder family knew before DBS robbed him of his childhood for more than a year.

“I’m the happiest mom in the whole wide world,” Kayla, Ryan’s mom, said. “When he first got diagnosed we were shocked and it was really hard because we had to have help with almost everything. But now he doesn’t need help or want help. I’m just so excited and really amazed. I’m very thankful because he’s like he was before.”

Last year as Ryan his family wait out in the lobby for their appointment, Dr. Honeycutt happens to walk by on his way into the Jane and John Justin Neurosciences Center. After a couple of steps, he realizes who he has passed and stops in his tracks. He comes back to say hello and marvels at the success of Ryan’s surgery.

“It’s a modern medical miracle,” he tells Kayla.

Then it’s time for a visit with Warren Marks, M.D., a neurologist and medical director of the Movement Disorders and Rehabilitations Programs at Cook Children’s. He sees Ryan every three months.

Ryan spent significant time with Dr. Marks before and after surgery at the Cook Children’s Motion Lab, which is equipped with technology that enables a specialized team the ability to analyze the unique movement of each individual patient and plan a treatment plan for them.

Ryan goes through a routine checkup with Dr. Marks. Then they go out to toss a rubber ball to each other. Dr. Marks leaves the game for a bit and gets a reflex hammer that he uses as a make-shift bat. They are having fun and both are in a great mood.

“This is so rewarding. This is why you have a DBS program because you get kids like this," Dr. Marks said. They come back to being completely normal kids. They come back to doing everything they were doing before the surgery. Everything they want to do. It’s perfect.”

Ryan has been cleared to play baseball, basketball and at recess. He’s not allowed to play contact sports like football or soccer. But he does take his football to school to play catch.

His friends call him the robot because of the surgery that includes two battery-operated pulse generators, much like pacemakers, implanted near the collarbone. Ryan doesn’t mind the nickname at all. He kind of enjoys it.

He shows his friends a video Cook Children’s made as it followed Ryan toward his surgery last year. And what do they say?

“They are like, ‘Wow. It’s amazing what modern technology can do these days,” Ryan said.

Did we mention he’s a really funny kid? Even during his worst days, he maintained his sharp sense of humor. But now the smiles come much easier to everyone in the household and even the tears aren’t so bad lately.

“When he was looking at the video the other day, every time I watch it I cry because I get to see where he was and where he is now,” Kayla said. “It’s not crying because I’m sad. It’s crying because I’m happy. I tell him, ‘Ryan I love watching it but it makes me cry.’

Kayla noticed something was wrong with her little boy around September, 2014. She noticed Ryan running differently than normal during one of his baseball games.

When asked what was going on, Ryan said he couldn’t help it. Then after noticing that his toes on his right foot were curling in, Kayla took her son to the family doctor.

Kayla remembered she had cousins who had dystonia and called her aunt to talk to her about it. After the conversation, Kayla arranged a referral to see Dr. Marks.

Dr. Marks commented that Kayla reminded him of someone and then as they talked, he found out that one of her cousins was not only a dystonia patient, but the first one that Dr. Marks treated at Cook Children’s who had deep brain stimulation surgery performed on her. The surgery was done 15 years ago before Cook Children’s began its own DBS program.

After an initial diagnosis, Dr. Marks verified that Ryan had a genetic version of dystonia.

Dystonia is a disabling disease and sometimes painful condition that limits children in many ways, impacting motor, cognitive and social development. Because medications have a limited effect on most forms of dystonia, Cook Children’s began a Deep Brain Stimulation Program of its own in 2007.

Kayla admits to being scared and nervous at the unknown of surgery. But after talking to Dr. Marks and his team, she hoped this would be a fresh chance for Ryan to return to the little boy he was before dystonia began to take over his body.

Ryan walked with his right foot on his toes and his right arm is now curled in, making it difficult to use. She hoped for Ryan to be able to walk and run like before, but also to use his right hand to write. He had to dictate his work at his elementary school.

Kayla said the hardest part was watching the things Ryan could do and how active he was, playing sports and being a typical little boy, to where he needed help walking, taking a shower or cutting up his food.

But that was then. Now Ryan is back to being the fun-loving, sports playing, ornery little boy he was before the surgery.

“The best part of all this … he’s right there,” Kayla said pointing to Ryan. “He’s walking, running and jumping. He’s able to take care of himself. No parent ever wants to see their child go through what Ryan went through. But hands down, we got more than we ever imagined.”

Learn more:

• What Is Deep Brain Stimulation?
• What Is Dystonia?
• The architect: Warren Marks, M.D.
• The surgeon: Helping kids like his own
• Cook Children's Motion Lab
• Cook Children's Movement Disorders Program

But nine months ago, that choice was anything but simple.

Despite trials of at least six different medications – nothing stopped Owen’s daily seizures. The Neurosciences team at Cook Children’s decided to make a pitch that’s almost too much for any parent to comprehend.

Owen’s seizures are unique in that they arise from a large area of his brain. The epilepsy team believed his best chance of becoming seizure-free was to disconnect the left side of his brain from the right. They wanted to sever the fibers (corpus callosum) that connect the two sides of Owen’s brain.

One traditional approach to this type of surgery is called corpus callosotomy, which often involves a large incision on the patient’s skin, opening a large hole in the skull, and then cutting the corpus callosum in half. While previously considered by many to be the “gold standard,” with good seizure control rates after surgery, it involves a lengthy recovery in the hospital and then at home.

While Owen’s family wanted better seizure control, they were reasonably hesitant to undertake such an invasive surgery.

Fortunately, Cook Children’s neurosurgeon, Daniel Hansen, M.D., was one of only a few pediatric neurosurgeons in the United States, who has experience doing similar procedures using less invasive endoscopic techniques.

Endoscopes (small video cameras with channels for operating tools) allow the surgeon to perform surgery through much smaller openings in the skull. When successful, this means a smaller incision, less surgical blood loss, quicker operating time, shorter hospital recovery, and the same chance of seizure freedom post-operatively as if undergoing a more traditional open surgery.

Owen’s family understood that endoscopic epilepsy surgery is the leading edge of advancement and their child would be the first such surgery at Cook Children’s, and one of only a few in the country that have been reported.

“Giving their consent and placing trust in our team, we went forward with surgery,” Dr. Hansen said. “The operation itself went well, we were able to completely disconnect the two hemispheres of the child’s brain using a bony opening not much larger than an inch square, and his recovery in the hospital was quick.”

A quick hospital stay was welcome news to Owen’s family. He’d already spent too much time at Cook Children’s fighting for his young life.

Owen’s story really begins at 8 months of age when his parents noticed weakness on his right side. His parents knew something wasn’t right with their son and they made an appointment for Monday with their pediatrician. But over the weekend they became afraid when Owen stopped using the right side of his body.

His parents rushed Owen to the nearest emergency room in Cleburne, Texas. From there, he was airlifted to Cook Children’s by CareFlight.

“We were so fortunate,” Allison Turner, Owen’s mom, said. “That's the day we met (Kenneth Heym, M.D.), who would become Owen’s oncologist. He happened to be on call that weekend. He met us there. He told us at that point, our kid was one of the sickest in the hospital. If we had waited to bring him in until the next day, Owen may not have made it.”

His initial scans showed a large stroke in the left side of his brain which soon was discovered to be related to a new diagnosis of acute myeloid leukemia. Owen endured four phases of chemotherapy and fortunately entered remission where he remains today.

While his stroke left him with right-sided weakness requiring ongoing aggressive therapy, it was his seizures that proved to be the most debilitating obstacle to overcome.

Owen’s first seizures occurred in the days following the stroke, but they were initially controlled with medication. He was able to stop taking medication shortly after his initial diagnosis, but the seizures returned around age 3.

His parents say Owen’s seizures involved periods of suddenly pausing in activity with a decreased response to them and sometimes unprovoked laughter. Other events were described as a sudden fall to the ground or stiffening and shaking of his arms and legs posing a significant risk of injury. Despite the trials of at least six different medications – nothing helped his daily seizures.

His neurologist at Cook Children’s, Howard Kelfer, M.D., referred Owen to the Cook Children's Comprehensive Epilepsy Program for epilepsy surgery evaluation.

Once Cynthia Keator, M.D., took over his case, she began a workup to determine where in the brain his seizures were arising, knowing the likelihood of seizure control with medications was minimal. Owen’s evaluation in the EMU (epilepsy monitoring unit) captured many seizures starting from the left hemisphere. Additional evaluation with a MEG (magnetoencephalogram) scan showed multiple areas of abnormal electrical activity throughout the left hemisphere both in front and behind the region of his prior stroke.

With options running out, the Neurosciences team suggested the trailblazing endoscopic surgery and introduced the family to Dr. Hansen.

Owen is now 9 months out of surgery and the family has noticed no seizures since. He’s an active young boy, playing with his monster trucks, who is making steady strides in kindergarten now that his uncontrolled seizures have stopped. While it remains too early to speak to years of seizure control, doctors say this is an encouraging start.

“After everything we’ve been through, I don’t know if you ever say you are comfortable. I guess we’ll always be on guard,” Allison said. “But we’re a little more relaxed now. Before the surgery, we never knew when a seizure would come on. Owen couldn’t go outside and play without one of us with him.”

Given the successful outcome with Owen, Cook Children’s has since performed two additional endoscopic procedures with similar favorable results. The Epilepsy team hopes to expand the number of children who are candidates for this type of surgery in the future. Such children will have medically refractory epilepsy and will have undergone a thorough evaluation by the team at Cook Children’s. Potential surgeries that can be performed endoscopically include complex surgeries including corpus callosotomy, single lobe disconnections, focal lesion resection, and functional hemispherectomy. As the team’s experience grows with this technology and technique, its use may expand beyond this short list.

And in the process changing more lives for the better.

“It has been such a relief for us. It was a huge decision to disconnect his brain. Just saying those words … But this was the best thing for him,” Allison said. “He has flourished. He’s made improvements by leaps and bounds. He has progressed in everything. His speech, school work, everything. His whole body is functioning with just the use of one side of his brain. He can’t throw a football with his right hand and he has problems with his fingers on his right hand. He can’t pick up a Cheerio with his right hand. But other than that, I don’t know if anyone would notice a difference in him and any other child.”

But other than that it would be hard to notice a difference in him and any other 5-year-old boy after becoming the first child at Cook Children's to undergo a trailblazing endoscopic epilepsy surgery.

Owen’s story begins at 8 months of age when his parents notice weakness on his right side. His parents know something isn't right with their son and they make an appointment for Monday with their pediatrician. But over the weekend they become afraid when they see Owen has stopped using the right side of his body.

His parents rush Owen to the nearest emergency room in Cleburne, Texas. From there, he's airlifted to Cook Children’s by CareFlight.

His initial scans show a large stroke in the left side of his brain which is soon discovered to be related to a new diagnosis of acute myeloid leukemia. He endures four phases of chemotherapy and fortunately enters remission where he remains today. While his stroke left him with right-sided weakness requiring ongoing aggressive therapy, it's his seizures that prove to be the most debilitating obstacle to overcome.

“We were so fortunate,” Allison Turner, Owen’s mom, said. “That's the day we met (Kenneth Heym, M.D.), who would become Owen’s oncologist. He happened to be on call that weekend. He met us there. He told us at that point, our kid was one of the sickest in the hospital. If we had waited to bring him in until the next day, Owen may not have made it.”

Owen’s first seizures occur in the days following the stroke, but they are controlled with medication. He’s even able to stop taking medication shortly after his initial diagnosis, but the seizures returned around age 3. His parents describe his seizures as periods of suddenly pausing in activity with a decreased response to them and sometimes unprovoked laughter. Other events are described as a sudden fall to the ground or stiffening and shaking of his arms and legs posing a significant risk of injury. Despite trials of at least six different medications – nothing helps his daily seizures.

His neurologist at Cook Children’s, Howard Kelfer, M.D., refers Owen to the Cook Children's Justin Comprehensive Epilepsy Program for epilepsy surgery evaluation. Once Cynthia Keator, M.D., took over his case, she begins a workup to determine where in the brain his seizures were arising, understanding the likelihood of seizure control with medications is minimal. Owen’s evaluation in the EMU (epilepsy monitoring unit) captures many seizures starting from the left hemisphere. Additional evaluation with a MEG (magnetoencephalogram) scan shows multiple areas of abnormal electrical activity throughout the left hemisphere both in front and behind the region of his prior stroke.

Given that his seizures arise from such a large area of Owen's brain, the epilepsy team feels his best chance of seizure freedom is to disconnect the left side of his brain from the right by cutting the fibers (corpus callosum) that connects the two sides of the brain.

One traditional approach to this type of surgery is corpus callosotomy, which often involves a large incision on the patient’s skin, opening a large hole in the skull, and then cutting the corpus callosum in half. While considered by many to be the “gold standard” with good seizure control rates, after-surgery care involves a lengthy recovery in the hospital and then at home. While Owen’s family wants better seizure control, they’re reasonably hesitant to undertake such an invasive surgery.

Fortunately, Cook Children’s neurosurgeon, Daniel Hansen, M.D., is one of only a few pediatric neurosurgeons in the United States who has experience doing similar procedures, using less invasive endoscopic techniques. Endoscopes (small video cameras with channels for operating tools) allow the surgeon to perform surgery through much smaller openings in the skull. When successful, this means a smaller incision, less surgical blood loss, quicker operating time, shorter hospital recovery, and the same chance of seizure freedom post-operatively as if undergoing a more traditional open surgery.

Owen’s family understood that endoscopic epilepsy surgery is the leading edge of advancement and their child would be the first such surgery at Cook Children’s, and one of only a few in the country that have been reported.

“Giving their consent and placing trust in our team, we went forward with surgery,” Dr. Hansen said. “The operation itself went well. We were able to completely disconnect the two hemispheres of the child’s brain using a bony opening not much larger than an inch square, and his recovery in the hospital was quick.”

“After everything we’ve been through, I don’t know if you ever say you are comfortable. I guess we’ll always be on guard,” Allison said. “But we’re a little more relaxed now. Before the surgery, we never knew when a seizure would come on. Owen couldn’t go outside and play without one of us with him.”

Owen is now 9 months out of surgery and the family has noticed no seizures since. He’s an active young boy who is making steady strides in kindergarten now that his uncontrolled seizures have stopped. While it remains too early to speak to years of seizure control, doctors say this is an encouraging start.

Given the successful outcome with Owen, Cook Children’s has since performed two additional procedures with similar favorable results. The Epilepsy team hopes to expand the number of children who are candidates for this type of surgery in the future. Such children will have medically refractory epilepsy and will have undergone a thorough evaluation by the team at Cook Children’s. Potential surgeries that can be performed endoscopically include complex surgeries including corpus callosotomy, single lobe disconnections, focal lesion resection, and functional hemispherectomy. As the team’s experience grows with this technology and technique, its use may expand beyond this short list.

And in the process changing more lives for the better.

“It has been such a relief for us. It was a huge decision to disconnect his brain. Just saying those words … But this was the best thing for him,” Allison said. “He has flourished. He’s made improvements by leaps and bounds. Just the progress in everything. His speech, school work, everything. His whole body is functioning with just the use of one side of his brain. He can’t throw a football with his right hand and he has problems with his fingers on his right hand. He can’t pick up a Cheerio with his right hand. But other than that, I don’t know if anyone would notice a difference in him and any other child.”

During his residency at the Children's Hospital of New Orleans, Dr. Roberts stood at the head of a young patient's bed, rolling him down the hospital corridor. The patient had just come out of brain surgery when he looked up at Dr. Roberts and asked, "Can I go home tomorrow?" It was at that moment he knew he had to work in pediatrics.

"For children, it's all about getting out of the hospital," said Dr. Roberts. "Everything they do is to get back to their mom's cooking, their friends and their toys. Everything that they do is to get better. It is an amazing thing to see that kind of spirit in a patient. And, as it turns out, those patients are children."

Dr. Roberts didn't always know he wanted to be a neurosurgon. In fact, he wasn't originally even interested in the field of medicine.

Richard Roberts was born and raised in New Orleans. He declared three majors before earning a degree in Philosophy. Unsure of what he wanted to do, he worked for five years as a mechanic, a contractor and a roofer. 

One day a friend, who happened to be a medical student, told him that he "couldn't be a roofer forever," and encouraged him to try medical school. Roberts agreed to try it. 

While working days as a roofer, Roberts took his prerequisite courses at night and began medical school at Louisiana State University at the age of 28. He intended to be a small-town, family practice doctor. 

During his first year of medical school, he attended a lecture given by the school's renowned Chair of Neurosurgery that included a video of a basilar tip brain aneurysm surgery.

"The aneurysm was in the deepest part of the brain, impossible to get to," Roberts said. "When he finished his lecture, the physician giving the lecture pointed across the screen and said, 'this entire area is the size of a centimeter.'" Dr. Roberts hooked.

Dr. Roberts went on to do additional training with an orthopedic surgeon to gain a unique perspective on how other specialists look at the spine and how they approach repairing it. It was the physical and mechanical aspects of repairing spines that intrigued him - putting in screws and rods to straighten the spine, in addition to operating on tumors of the brain and spine. 

When Dr. Roberts came to Cook Children's in 2007, he joined two other top pediatric neurosurgeons, David Donahue, M.D., and John Honeycutt, M.D., and a team of professionals that he describes as invaluable. He regularly consults directly with physicians and specialists across the medical center. He says this open, easy collaboration is one of the greatest benefits of working for Cook Children's Health Care System.

Since being at Cook Children's, both of Dr. Robert's own daughters have been patients. When one daughter had ear tubes put in, it was knowing the anesthesiologists and how careful they are, that eased his mind the most. 

His other daughter had tethered spine surgery, a surgery that Dr. Roberts performs on a regular basis. Just as he trusts his partners to care for his patients when he is away from the medical center, he wholeheartedly trusted them to perform surgery on his own daughter. 

"Like any other parent, I went to pre-op. When it was time for her to go back, I gave her a hug and a kiss. She was taken to the operating room and I went to the waiting room," Dr. Roberts described. 

"I knew how long the surgery takes because I do it all the time. And I made it all of seven minutes before looking at the clock. I know how safe the surgery is, but having that parent experience is very different."

Just as Dr. Roberts respects his coworkers, their admiration for him also runs deep.

"Dr. Roberts is often thanked by families for performing a life-saving procedure on their child," said Grace Crotzer, physician assistant to Dr. Roberts. "He will always bring the spotlight back to the patients and tells families that he only worked a few hours, whereas their child had the actual hard work during the recovery process. I admire Dr. Roberts in so many ways and consider myself lucky to learn from him every day."

How To Give

You don't have to be a neurosurgeon to save lives, donate today at cookchildrenspromise.org. Cook Children's embraces an inspiring Promise to improve the health of every child in its region through the prevention and treatment of illness, disease and injury. Through your generosity, you can help us fulfill this Promise. Click here to find ways to support Cook Children's.

What is Deep Brain Stimulation Surgery?

Deep brain stimulation surgery involves two parts: implanting electrodes into the brain and a pacemaker under the skin of the chest. The two devices are connected by the surgeons and electrical impulses are sent from the pacemaker to the brain to correct the abnormal impulses of the movement disorder. The two surgeries take place about a week apart from each other. Following both procedures, the child usually goes home the next day.

The Path to Asleep DBS

When neurosurgeons at Cook Children’s first began performing DBS, patients had to be awake. Now, thanks to enhanced technology, patients can be under anesthesia and asleep. This change in the treatment’s technique came with the addition of an iMRI, which is essentially a giant magnet, at Cook Children’s. The iMRI allows neurosurgeons to have pinpoint accuracy while performing a delicate brain surgery.

“With all the technology we have, I know I am in the exact spot I want to be," said John Honeycutt, M.D., medical director of Neurosurgery at Cook Children’s “My accuracy for DBS is 0.5 millimeters."

Dr. Honeycutt is one of the world’s leaders when it comes to using DBS on patients with dystonia and will perform the hundredth surgery. It will be the fifteenth asleep surgery for Cook Children’s.

Building a DBS Program

Prior to 2003, DBS was done almost exclusively for Parkinson’s disease and tremors. Then, the Food and Drug Administration (FDA) allowed for DBS to be done on patients with dystonia, beginning at age 7. At that point, most hospitals weren’t doing the surgery on children.

Warren Marks, M.D., a neurologist and medical director of the Movement Disorders and Rehabilitations Programs at Cook Children’s, says Cook Children’s DBS program grew as part of an evolution of the movement program at the medical center.

Dr. Marks said it took two years of hard work to develop the DBS program at Cook Children’s. It involved assembling and organizing two entire teams – one to do the evaluations and postoperative management and another to do the surgery.

Cook Children’s performed its first DBS surgery in 2007.

“We have slowly and methodically grown the program so we try and do it in the best way we can and try to provide for the most kids we can,” Dr. Marks said. “The program is somewhat unique in that we are really focused on children. When we started our program there was no adult program to work off of. Virtually all DBS programs where surgeries are performed on children are in conjunction with adult programs. We didn’t have an adult program to work off of. We really did start from ground zero.”

The Road Ahead

Both Dr. Honeycutt and Dr. Marks take the hundredth procedure in stride. The milestone reinforces their success, but they say they never looked at this program as a race. They have been very careful in their approach to the surgeries and the patients they are treating.

What excites them is the fact that the last 15 cases were performed while the children were asleep.

Dr. Honeycutt says it can be a traumatic event for the kids to go through surgery awake, even after the efforts to keep them pain free while awake in previous surgeries. So with the advent of iMRI guided system, he saw the opportunity to perform the surgery on children who were asleep.

There will still be some surgeries where the patient has certain disorders that will require him or her to be awake. But for the most part, the surgeries will be done with the patients asleep.

*Illustrations/Graphics courtesy of Clearpoint.

“People told me everybody wants to work in pediatrics until you have kids,” Dr. Honeycutt said. “They said, ‘Then you won’t want to work on kids any longer. It will be too much.’ But it was the exact opposite. When I had my own kids I realized even more this was what I wanted. I wanted to help kids like my own. It gave me much more empathy. It made it much easier to take care of them. In my line of work, I’m asking parents to hand their kids off to me and take care of them. They entrust their kids’ lives in my hands and I understand that.”

As a teenager, Dr. Honeycutt saw first-hand the role a surgeon can play in helping a family after a traumatic event.

One afternoon in his hometown of Paragould, Ark., while “horsing around” after football practice, the then 15 year old broke his neck.

A surgical scar remains on Dr. Honeycutt’s neck and so do the memories of his time in the hospital. He describes the scene at the time like what you would see in a bad TV movie as he was placed in traction.

As a patient, he saw physicians changing patient’s lives and making them better. The straight A student now knew what he wanted to be when he grew up.

Then during medical school, Dr. Honeycutt found his specialty.

“When I was doing my neurosurgery rotation, it all just clicked,” he said. “It clearly had all the parts I really enjoyed. I liked being a surgeon. I liked the neurosciences. I liked the workings of the brain. I just loved everything about it.”

While Dr. Honeycutt is now an experienced neurosurgeon, he still strives to be at the forefront of the latest technology and technique. Working on a child’s brain requires not only a steady hand, but the latest in state-of the-art technology.

Dr. Honeycutt and his fellow neurosurgeons use their expertise to perform the most intricate and delicate surgeries, such as deep brain stimulation, iMRI-guided surgery and laser ablation surgery.

“It’s an exciting time right now because we are learning so much about the brain and how it works and at the same time our technology continues to improve with micro instruments, with robotics and computers,” Dr. Honeycutt said. “If I don’t keep learning and keep up with what’s going on, I can get so far behind, rather quickly. One of the great things about Cook Children’s is we are always on the leading edge.”

Another aspect of Cook Children’s that Dr. Honeycutt said makes it unique is the relationship between the neurologists and the neurosciences. As surprising as it may be, Dr. Honeycutt says it’s rare for other hospitals to have the neurologists and neurosurgeons share a clinic together. He calls the working relationship between everyone involved in the Department of Neurosciences at Cook Children’s unbelievable. A lot of it has to do with that communication and the skill of the surgeons and physicians. They push each other constantly to do better.

At Cook Children’s, the neurologists and neurosurgeons can give each other immediate feedback on a patient. “You look at our situation and say, ‘Why doesn’t everyone do this?’ It’s so silly that people don’t do this everywhere,” Dr. Honeycutt said. “It’s one of the things that makes this place so special.”

Photo credit: Kelly Gavin, Texas Rangers.