Instead of picking up balloons and cupcakes, Lisa Hannigan and Robert Brother found themselves waiting in the Pediatric Intensive Care Unit (PICU) at Seattle Children’s one day before their son’s first birthday. In less than 36 hours, they had watched as their perfectly healthy son, Bear Brother, lost use of his arms and hands before he was rushed into emergency spine surgery for a neurological condition known as a Chiari malformation.
“It all happened so quickly,” said Hannigan. “After Bear’s daycare called me at work, we got to the Toppenish emergency center around 10 a.m. First thing the next morning he was going into surgery at Seattle Children’s.”
Tumble triggers symptoms
Bear’s mysterious weakness first started after he took a non-concerning tumble while playing with his two older sisters.
“His sisters love and adore him to the point that they kiss him all the time until he’s had too much,” Hannigan said. “One of his sisters ran up to try to kiss him, and his first instinct was to try and dodge her.”
Still new to walking, Bear let go of the couch and fell backward, hitting his head.
The next morning at daycare Bear couldn’t grasp any of his toys. By the time he arrived with his mom at the emergency center – about a 15-minute drive from their home in Wapato, Washington – his right arm had gone completely limp.
Timely assessment leads to timely transfer
The local pediatrician who first evaluated Bear was quick to recognize the symptoms of a spinal cord injury. Given the complicated nature of these injuries, he immediately consulted the on-call neurosurgeon at Seattle Children’s Neurosciences Center. Together, they determined that Bear needed emergency transport to Seattle Children’s, where a team of specialists could assess his injury and recommend the best treatment.
“We get referrals from all over the region and the country to diagnose and treat complex conditions of the brain and spinal cord,” said Dr. Richard Ellenbogen, director of Chiari malformation surgery at Seattle Children’s. “Our team of neurosurgeons, nurses, radiologists and operating room technicians sees hundreds of patients with Chiari malformations every year. When a patient like Bear presents emergently, the likelihood that we’ve seen his particular condition before and can reach a surgical or conservative therapy solution quickly is very high.”
Brother drove behind the ambulance carrying his wife and son from Toppenish to Seattle Children’s.
“When you’re in a car by yourself, following the ambulance that has your son in it for three hours, everything that might go wrong goes through your mind,” Brother said. “Once we got to Seattle Children’s, I knew we were at the right place, at the right time.”
Chiari malformation found
At Seattle Children’s, a team of doctors worked quickly to find the cause of Bear’s sudden paralysis.
“Bear had a spinal cord injury where the base of his brain meets his upper spinal cord,” said Dr. Jason Hauptman, the Seattle Children’s neurosurgeon who cared for Bear. “This is a very unusual problem for a baby. Babies fall all the time and they don’t get spinal cord injuries under those circumstances.”
A magnetic resonance imaging (MRI) scan revealed the root cause of Bear’s injury – a neurological condition he was likely born with called a Chiari malformation.
Chiari malformations can affect children and adults at any age. Specifically, Bear had what’s known as a Chiari 1 malformation. Chiari 1 malformations occur when the back of the brain doesn’t entirely fit in the base of the skull and protrudes out of the bottom onto the top of the spinal cord. Even though they are thought to be congenital, Chiari malformations usually don’t come to medical attention until children are older and can describe their symptoms. Chronic symptoms associated with a Chiari malformation typically include the gradual onset of headaches, neck and shoulder pain, and weakness in the legs and arms due to fluid buildup in the spinal cord.
“Bear had a very significant Chiari malformation and the bone had grown such that the area at the base of his skull was amazingly narrow,” Hauptman said. “When he fell back and hit his head, it caused the bone to hit the spinal cord and result in injury.”
Heartbroken parents prepare for baby’s spine surgery
Hauptman thought Bear could undergo the decompression surgery that is typically recommended for older children and adults with significant Chiari malformations. In the surgery, he would remove the base of Bear’s skull and his top vertebrae to help take pressure off his lower brain stem and spinal cord.
“When we finally settled in for the night, I let our friends and family know what was happening through a group text because we had to cancel the birthday party,” Hannigan said. “We were heartbroken Bear was spending his birthday in the hospital, but it was the power of their prayers that came pouring in that helped us stay so calm despite everything that was happening.”
Bear’s surgery the next morning stayed at the forefront of his parents’ minds throughout the sleepless night. They wouldn’t know until after surgery whether he would regain the ability to crawl, walk or move his upper body.
“We were ready for anything,” Hannigan said. “Our priority that weekend was to get him healthy and we knew we were at the best place for that. We knew we had a whole team that was going to do what was best for him.”
The same boy, but better
Immediately after surgery, Bear was lifting up his arms and holding objects. Within a day, he was back to walking.
“It’s incredible how robust his recovery was,” Hauptman said. “That kind of recovery doesn’t happen routinely, but Bear was fortunate to have a quick assessment by his parents and the local pediatrician and a timely transfer to Seattle Children’s so that we could get him into surgery immediately.”
With three children of his own, Hauptman sees himself as part of his patient’s family.
“When I take a child into the operating room, I feel like they become my child,” Hauptman said. “And as I would be for my kids, I was thrilled Bear had this miraculous recovery. It reinforces why we do what we do. It gave me a sense of validation and optimism for all of the children we care for.”
True to his namesake, a few days after surgery, Bear returned home a newly christened 1-year-old stronger than ever.
“Bear is our miracle child,” Brother said. “We’re thrilled with how he’s doing today. To us, it seems like nothing ever happened. He’s the same boy, but better.”
For kids with complex neurological disorders who have few or no other treatment options, neurosurgical innovations can offer new hope, and even a cure, which is one of the reasons we launched It Starts With Yes: The Campaign for Seattle Children’s. It Starts With Yes is a $1 billion initiative with a bold vision to transform children’s health. With your help, we will continue to provide financial assistance for families in need; expand necessary healthcare and research facilities; and invest in clinical and research programs to advance pediatric medicine. Learn more or join It Starts With Yes to improve how we care for kids like Bear and transform childhood health for generations to come.