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.

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."

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“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.”

Richard Roberts, M.D., a neurosurgeon at Cook Children’s, wonders what it’s worth for your child to play sports with a reputation for head trauma.

“I think the fact that when the NFL players sued the league initially and won, the judge said the settlement (more than $700 million) wasn’t big enough,” Dr. Roberts said. “That says a lot about this growing issue more so than anything else.”

The issue discussed in the NFL cases has been CTE (chronic traumatic encephalopathy), a progressive, degenerative brain disease that has been found in some athletes with repetitive brain trauma.

Research is currently being done to study just how playing contact sports such as football mainly, but also soccer, can cause damage to an athlete’s head. But is it worth it for parents to wait for the results of this work.

“Amateur sports are different than professional sports because no one is feeding their family with the activity that they are doing,” Dr. Roberts said. We need to look beyond the short term and really understand what could happen in the long term. That potential for long term problems should be the primary thought, not the secondary thought.

“What is the actual incidence? We don’t know. But if it was your kid, how much would you be willing to risk? Even if it was 1 in 10, would you roll the dice on your own kid?”

Dr. Roberts has previously worked at Children’s Hospital in Philadelphia and Charity Hospital in New Orleans. While he saw concussions at the other hospitals, he’s never seen parents argue with him about concussions as he has seen at Cook Children’s.

“Part of what I’ve seen which is different here than other places is that I do get push back from parents who I think underestimate the severity of some of these injuries,” Dr. Roberts said. “Some of it is that they want their kids to play and I think some of it is the short term nature of some concussions.”

Children get concussions and they do well relatively quick, so opposed to having a broken arm which is in a cast or needing surgery and having stitches for three weeks, kids hurt their heads, they are knocked unconscious for five minutes, but then feel essentially better soon after. This apparent sign of improvement makes it difficult for some parents to grasp that their child may have a fairly significant brain injury.

“The more we understand concussions and the more we see people who have hurt their heads for various reasons, soldiers, professional athletes, anyone who has suffered a head injury, I think that we are seeing that in adulthood they are starting to have more cognitive issues,” Dr. Roberts said. “Now the science is not perfect yet. We can’t say to a football player you had three concussions and that’s why you have dementia. We can’t say to the soldier you were exposed to be a bomb blast and that’s why you have dementia because it could be multifactorial. It could be that you have the right genes to make you this way later on. But the percentage seems higher in people who have had traumatic brain injuries.”

Dr. Roberts says parents should be concerned after head injury one. He knows you have to let kids live their lives and be kids, but the brain wasn’t made to get beat up like happens sometimes in sports.

It’s not known for sure that after one concussion, people are more likely to get more, but Dr. Roberts’ suspicion is that it is likely the case.

And when does he have a serious heart-to-heart with the parents and the athlete?

“After two. We discuss no longer participating in the activities which could cause further injury because the likelihood of you having a head injury in your lifetime is still pretty high,” Dr. Robert said. “You are going to hit your head on a tree branch or you are going to fall off your bicycle or someone is going to run into you. You are going to be stepping out of the car and slip or walking across ice and fall down. My opinion after behavior has shown us that you are going to get injuries in a particular sport, you should probably not be playing in that sport because you are not able to protect your head.”

Dr. Roberts has seen strong reactions from both the parents and the kids after being told he or she should quit playing their respective sport. And it’s not just football as most people expect. It’s with the gymnast who has fallen off the bars and knocked herself out or the soccer player who has headed the ball and gotten knocked unconscious.

But football still remains king in Texas – in popularity and in concussions.

So what can be done about it?

Dr. Roberts is not sure there’s a good answer to that question. Building better equipment helps, but then armoring players probably makes them feel invincible and they hit harder. If you take away the facemasks or hard shell football helmets, he expects you will return to the old days – less concussions, but more skull fractures and in the process, immediate deaths on the playing field.

For now, Dr. Roberts wants parents to monitor their kids closely and to take the recommendations from their doctor closely. If they say it’s time to stop – stop!

“All the steps that sports are taking to make it safer are positive,” he said. “I think that everybody involved has to think less about return to play and more about long term health.”

About the source

Richard Roberts, M.D., is a neurosurgeon at Cook Children's. When a child with a neurological disorder requires surgery, the experts at Cook Children's Medical Center offer comprehensive care and state-of-the-art technology. With the help of such state-of-the-art equipment as the revolutionary intraoperative MRI (iMRI), our neurosurgeons are able to determine effectiveness of surgical procedures for cranial and spinal nerve disorders and tailor the treatment to each child's unique needs.

The procedure marks a milestone for the patients treated at Cook Children’s. Now minimally invasive neurosurgery can be performed to destroy abnormal brain tissue with a laser. The surgeon uses the iMRI to see what’s going on at that exact moment during the brain surgery and identify where the critical, functioning parts of the brain are so he can avoid them while lasering the abnormal tissue. Most patients go home within 24 hours and with only one stitch.