‘We got the monster out’
When a bad headache leads to brain surgery for a 4-year-old girl, her parents explain it in words she can understand.
Sue Thoms | firstname.lastname@example.org | July 29, 2019 (view a pdf version)
Kymber Stockton knew nothing of brain tumors and vascular malformations.
Only 4 years old, she never even had a headache.
So, the bright, articulate little girl described the pain the best way she could: A monster.
A monster inside her head.
That monster—a mass in the center of her brain—led to an emergency room visit and brain surgery at Spectrum Health Helen DeVos Children’s Hospital.
“Everything has been such a whirlwind,” said her mother, Melody Bauer. She sat beside Kymber, who calmly watched a movie from her hospital bed.
Just two weeks earlier, Kymber had been as active and high-spirited as ever. A blue-eyed girl with wispy blond curls, she played outdoors and wrestled with her 6-year-old brother, Korbyn. She followed her mom around their home in Howard City, Michigan, keeping up a steady stream of chatter.
And then on a Tuesday in late May, Kymber said her head hurt. She started to throw up.
A family doctor said it sounded like a virus. She took medication for the nausea, but the headaches and vomiting persisted. She had trouble sleeping.
“She said she couldn’t rest because there was a monster in her head that was hurting her,” Bauer said.
On the following Sunday afternoon, Kymber woke from a nap, disoriented. She pointed to her dog, Mizzi, lying at the foot of her bed and asked, “What’s that?”
She didn’t recognize her beloved dog. Alarmed, her parents rushed her to the emergency department at Helen DeVos Children’s Hospital.
“I thought maybe she was dehydrated because she was sick so long,” Bauer said.
After a CT scan and an MRI, pediatric neurosurgeon Michael Bercu, MD, sat down with Kymber’s parents to discuss the cause of her headaches. The scans found a mass—or lesion—deep within her brain. It lay near her thalamus, a structure that sits just above the brain stem.
Bleeding from the lesion had obstructed the flow of cerebral spinal fluid, causing pressure on her brain—and headaches for Kymber.
The doctors said the mass could be a tumor. But they believed it was most likely a cluster of tiny blood vessels, called a vascular malformation.
“My heart dropped,” Bauer said. “I thought, ‘This is the end.’ I didn’t think it would be possible to remove it.”
A team of brain surgeons
Because of the complexities involved, two surgeons worked together in diagnosing and treating Kymber’s lesion.
As a pediatric neurosurgeon, Dr. Bercu brought expertise in dealing with pediatric tumors. Justin Singer, MD, the director of vascular neurosurgery and the neuro-endovascular program at Spectrum Health, brought significant experience treating vascular malformations of the brain.
“I think you have to have the most expertise in the room to give the best care,” Dr. Bercu said.
The location of the mass made surgery challenging.
“(The thalamus) is a very critical portion of the brain that controls movement and sensory functions for the right side of the brain,” Dr. Singer said. “That makes it a very difficult area to do surgery on. There’s no great way to get there.”
The surgeons decided to perform a minimally invasive surgery. They used a specialized retractor, the NICO BrainPath. The device, which looks like an oversized pen with a pointed tip, is designed to move through the delicate fibers of the brain. The surgeons placed it through the right side of Kymber’s brain.
“That tip spreads brain tissue gently without causing significant damage,” Dr. Bercu said. Once they reached the lesion, the doctors removed the center of the retractor.
This left a hollow tube that provided a corridor through the brain to the lesion. The surgeons operated through that tube, viewing the surgical site through a microscope positioned over the tube. They removed the mass, which was a bit smaller than a golf ball.
The targeted approach is designed to minimize disruption to surrounding tissue and preserve brain function.
“I think you have to treat the brain with a great deal of respect,” Dr. Bercu said. “Every cell matters. The more minimal the approach, the better the outcome.”
“(The thalamus) is a very critical portion of the brain that controls movement and sensory functions for the right side of the brain,” Dr. Singer said. Surgery would be very challenging. (Chris Clark | Spectrum Health Beat)
An intraoperative MRI system provided detailed images of Kymber’s brain during the surgery, allowing the doctors to verify they’d removed the entire mass.
Throughout the three-hour operation, Kymber’s parents waited and worried. They knew brain surgery could affect motor skills, memory, language or other brain functions.
But as she came out of recovery, Kymber looked up at her parents and said, “Hi.”
“I love you,” her mom said. “I love you, too,” Kymber replied. Those three little words meant so much. “We just started crying,” Bauer said. “Our baby was back.”
Eager to play
The surgeons sent the lesion for laboratory analysis and a week later, tests confirmed their diagnosis: a benign vascular malformation, called a cavernoma.
“The (lab results) are very encouraging,” Dr. Singer said. “This is most likely curative for her. Hopefully, she won’t have this problem again.”
Left untreated, the lesion might have grown, possibly causing progressive injury to Kymber’s brain, Dr. Singer said. It could have caused fluid build-up in the brain—or even ruptured, with life-threatening consequences.
By joining forces, Drs. Singer and Bercu removed the lesion.
For Kymber, her parents explained the operation in terms she could understand.
“We got the monster out,” her mom said as she recovered.
Each day after surgery, Kymber became more animated—and eager to get up and play. Because a tube drained fluid from her skull post-surgery, she had to remain in bed for a week.
Once the doctors removed the tube, Kymber happily took her grandmother’s hand and walked to the hospital playroom.
“It’s so good to see her up and playing,” Bauer said, as she watched Kymber explore the toy kitchen and musical instruments. Except for a little trouble walking at first, she said Kymber seemed like her old self.
A gift of giggles
At home, a village waited to greet her. Throughout Kymber’s hospital stay, her parents relied on support from her older brothers and sisters, extended family and friends.
And one person in particular couldn’t await her return—her 6-year-old brother, Korbyn. “That’s her bubby,” Bauer said.
Eight days after surgery, Korbyn arrived for a visit. He and Kymber stood near the foot of her bed, looking at each other solemnly.
“Your tube’s out?” Korbyn asked, referring to the drain tube.
“Yeah,” Kymber said.
“Good,” he said. He stepped forward and put his arm around his sister.
Moments later, the two sat on the bed, laughing as they played with Mr. Potato Head. Korbyn rearranged the features, putting feet on the top of the head and the ear where the nose should be. Kymber erupted into giggles. Their mom watched with a smile.
Her laughter warmed the doctors’ hearts, as well.
As a father of three young children, Dr. Singer can’t help but put himself in Kymber’s parents’ shoes.
“What we did got Kymber home with her family, her siblings, her parents and her loved ones,” he said. “It puts things into perspective a little bit—why we are here and why we stepped up to take on this job that often does mean life or death.”
A few weeks after her surgery, Kymber returned with her parents, brother Korbyn and sister Destiny, for a new MRI exam and checkup. She curled up on the lap of her dad, Travis Muste, as she waited to see the doctors.
As part of her neurological exam, Dr. Bercu held out his hands and asked her to squeeze his fingers. He asked her to swing her legs forward and kick him.
“Excellent. You’re so strong,” he said. “Do you have superpowers?”
A shy smile flickered across Kymber’s face. Her parents said she was doing well at home. She had a little weakness in her right hand, and an occupational therapist gave them exercises to help strengthen it.
That could be caused by swelling or the initial bleeding, the doctors said. They expect it to continue improving.
“There’s a good opportunity for things to rework themselves as time goes on,” Dr. Singer said. “Healing for the brain is a continuum that’s days, weeks, months, years.”
As the family prepared to head home, Muste marveled over the challenge his little girl had faced—and overcome.
“For them to go through her brain the way they did—the list of the things that could go wrong there is astronomical,” he said. “And for her to be 100 percent her at the end of this, that’s amazing.”