Kirk Walters heard a crash in the kitchen and ran in to find his son lying on the floor.There were no visible signs of injury. Maybe Sam fell and twisted an ankle? But when his son answered “Where does it hurt?” by grabbing the back of his head, the father of four made a quick decision to call an ambulance and head to The University of Toledo Medical Center, where a neurosurgeon saved him from a rare brain bleed.
“That was our demarcation of time — Jan. 24, 2011. There is before and there is after. He was as healthy as an ox one minute and the next he just collapsed on the kitchen floor getting a Diet Pepsi,” Kirk said. “The progress he has made has just been unbelievable.”
Four years after that deep brain Arteriovenous malformation caused significant bleeding on the left side of Sam’s brain, which is the dominant side, the Walters family reunited last month with UT Health neurosurgeon Dr. Daniel Gaudin for a checkup.
“This was a complicated case and seeing his progress is the reason why I do this,” Gaudin said. “We don’t have a lot of huge successes like that.”
When Sam came to the hospital four years ago, he was unresponsive. The first step was to control the bleeding and save his life, then find the cause. In Sam’s case, that cause was a deep brain Arteriovenous malformation, known as AVM, which is an abnormal collection of blood vessels.
It is estimated that in the United States one in 200 to 500 people have an AVM in the brain, but half the time it isn’t discovered until there is bleeding more frequently. There is a 2 to 4 percent chance of a hemorrhage per year for people with an AVM, which compounds with age, and there is a risk of permanent brain damage or even death when it happens, Gaudin said.
Sam, who is severely autistic, was not able to communicate with his caregivers, which caused Gaudin and his team at UT Health to make adjustments to his treatment plan.In most cases, and specifically for Sam, a blood clot needs to be removed to save the patient’s life and then he would need to have part of his skull removed for quite some time to accommodate for the brain swelling. After a couple months when the swelling recedes enough, the doctors can then replace the skull bone and perform radiation to address the AVM.
In Sam’s case, however, he would not keep the helmet on to protect his brain while the piece of his skull was removed, so that was not an option.
“We needed to put the bone back earlier even though the swelling was still present in order to start the stereotactic radiosurgery in two to three weeks, rather than two to three months,” Gaudin said.
The radiation therapy focuses high-powered energy on a small area of the body. The radiation causes the AVM to close off over a period of two to three years in up to 80 percent of patients. After the radiation therapy, Sam’s AVM completely resolved.
“His parents were great through the whole process as we explained why we were doing things a bit differently,” Gaudin said. “There were some challenges, but we overcame them.”
Sam was in intensive care for a long time and had a difficult road ahead with some complications and other health concerns along the way. It was a year and a half before they could begin the process of teaching him how to walk again.
“When he took his first steps, everybody was in tears. Everybody,” said Mary Walters, Sam’s mother and director of the Autism Model School from which he graduated in the fall. “Then it progressed quickly. He went from barely standing to taking a few steps to walking the length of the gym in almost no time. Before this all happened, he would run like the wind. I had to take up running to keep up! So it was his determination that got him back on his feet.”
Kirk, who is the editorial cartoonist for The Blade, was worried that his son’s personality might have changed. Sam was withdrawn for a while and, of course, he couldn’t be as active as he once was.
“But then there was birthday cake at a nursing station where he was in rehab and Sam wheeled himself in there. Only able to use his left arm, he used his foot as sort of a rudder to steer and get in there without going in circles. He stole the cake and ate half of it before anyone noticed,” Kirk said with a laugh. “That’s when I knew he was going to be OK. If Sam is fixated on something, he will get it and there is nothing you can do to stop him. He’s mischievous and quite the problem solver.”
The recent reunion between the Walters family and Gaudin happened to occur during the Autism Awareness Month of April.
“I think the autism, maybe ironically, helped in his recovery,” Kirk said.
“He does have that resilience,” Gaudin agreed.
Sam, now 22, has resumed the language skills he had before the incident. There is still some weakness on his right side, but that will continue to improve over time.
The progress he has made from where he was is remarkable, his mother said.
“The entire staff at UTMC was fabulous,” Mary said. “They were so patient and explained everything to us every step of the way. We were a team.”
“On a particularly difficult day, I’m sitting in the hallway and a woman pushing a cart stops to tell me a joke. I don’t even remember the joke, but I started laughing and she said, ‘Good. It looked like you needed to smile,’” Kirk remembered. “And that’s an example of just a nice touch through our experience here. That woman didn’t need to stop, but she did. That stays with me four years later.”