Most people think of a stroke as something that happens to older people. In reality, strokes can happen to anyone, at any age. Edward Shideler was just 18 months old when it happened to him.
“He woke up around 4 am from a dead sleep,” said Christina, Edward’s mother. “He was screaming in a way I’ve never heard him scream before, like a painful or terrified scream. I went into his room and got him out of the crib, but I couldn’t comfort him.”
Christina noticed her son’s arm was limp, and that he kept falling over. She thought maybe he slept wrong on his side, but he would cry whenever she tried to help him back to sleep. She called her husband, Adam, who was working a night shift, and said she was taking Edward to the hospital. They agreed to meet in the Tallahassee Memorial Children’s Emergency Center, which is affiliated with Wolfson Children’s Hospital of Jacksonville.
“Within five minutes of us being there, they said, ‘We think he had a stroke.’ The doctor did an MRI and saw the clot, and recommended Edward go to Wolfson Children’s for their pediatric neurologists and neurosurgeons. That’s when they told me he was going to be airlifted,” Christina said.
A race against time
Edward’s mom saw him off on the helicopter while his dad headed straight for Jacksonville. He arrived in time to see his son before he was prepped for surgery.
There were others waiting for Edward, too: Harry Abram, MD, board-certified pediatric neurologist with Wolfson Children’s Hospital and Nemours Children’s Specialty Care, Jacksonville, Ricardo Hanel, MD, PhD, neurosurgeon and co-medical director of the Baptist Stroke & Cerebrovascular Center, and a team of specialized pediatric radiologists, anesthesiologists and nurses. Wolfson Children’s and TMH are partners in a Code Stroke Pathway, which fast-tracks children with stroke symptoms to Wolfson Children’s for emergency care.
“Strokes in adults are much more common,” said Dr. Abram. “If they can present to the hospital within a short timeframe, we have the option of giving the tPA clot buster medication. In Edward’s case, the only option we had was for Dr. Hanel to remove the clot surgically through a catheter.”
Deciding on surgery
Edward would be one of the youngest patients on record who has undergone this procedure, Dr. Abram explained. He and Dr. Hanel discussed all possible options, deciding to take action.
“The options were to do nothing and support him through it, or try to remove the clot and restore blood flow to his tissues,” Dr. Abram said. “His age makes this quite remarkable. There is no right answer, but in this case, we had a great outcome.”
“We went into the brain, fished the clot out, and then repaired a tear in the carotid artery by doing angioplasty,” said Dr. Hanel. Angioplasty is a common stroke treatment for adults, but rarely performed in children. It involves using catheters inserted into the blood vessel to remove the blockage, and then inflate a small balloon to open the artery enough to restore blood flow to the brain.
“From everything we’ve heard about this procedure, it has never been attempted before on someone Edward’s age,” said his father, Adam. “Dr. Hanel doing what he did and even being willing to try, consulting with Dr. Abram and working through that problem — I can’t put into words what that means to us. It’s truly amazing what they did.”
A time and place to heal
After his surgery, Edward spent a few days in the Wolfson Children’s Pediatric ICU (PICU), followed by a week-long stay in the hospital. After lots of testing, doctors confirmed his blood clots formed because of the tear in his carotid artery, which Dr. Hanel repaired.
“He had a very specific cause of stroke we call dissection,” said Dr. Hanel. “He had a fall while playing with his dog on Saturday, and that probably created a tear is his vessel, which created the clot that migrated to his brain. In a toddler, it’s very hard to predict this because they fall all the time.”
While Edward was taking in all the sights and sounds of the hospital, his parents were adjusting, too. Many of their son's nurses became their friends, and they still keep in touch.
“Being in the hospital feels terrible for anybody, but it was made better by the staff and resources provided,” Christina recalled. “They have these little wagons, and we’d walk him around in those and Edward absolutely loved it. Nurses would stop to interact with him. His obsession with Baby Shark started there. His nurses would use their Vocera [a device used to communicate with other team members] and say, ‘Call Baby Shark,’ so it would play and calm him down anytime they needed to take his vitals.”
“Obviously their main concern is taking care of your child, but they went above and beyond to accommodate us, too,” said Adam. “Once we could get Edward out of the bed, they helped us get him out to hold him while making sure he’s hooked up to all his monitors, or get him out for a ride in the wagon. It’s not easy to do when he’s hooked up to all those things, but anytime we asked it was never, ‘Maybe in an hour.’ It was, ‘Yes, I’ll be there in one minute.’”
A happy, healthy toddler
Edward’s next stop was Nemours Children’s Hospital in Orlando for a month-long stay on the rehabilitation floor. Today, Edward is a happy, loving, Elmo-obsessed 2-year-old who says ‘hi’ and ‘bye’ to everyone he passes. His recovery is ongoing, and he has lots of help from his providers and parents.
“He’s in occupational and physical therapy once a week,” said Christina. “He can’t pick things up with his right arm and hand, and has a hard time controlling muscle movements on his right side. His fine motor skills are lacking and he wears a thumb brace during the day to loosen his right hand so he can maneuver more. And with a brace on his foot, his walking has gotten a lot better.”
The signs of stroke
Dr. Abram said that while falls can lead to strokes, as suspected in Edward’s case, strokes in children can also be caused by congenital heart conditions or issues with metabolism. He wants parents to know strokes in children do occur, and they should know the signs.
“We often dismiss it as a fracture or sleeping on the arm wrong, and many parents take a wait-and-see approach. If a child has sudden weakness in the arm, leg or face, they need to go directly to the ER. Most childhood strokes aren’t diagnosed for 24 hours, so it’s remarkable Edward was treated before then,” he explained.
“Don’t ignore your instincts,” said Christina. “At first I felt like I was overreacting or being crazy. I thought, ‘It’s 4 am. We’re tired.’ But when nothing got better, I still felt like maybe I was overreacting, but my instinct told me to take him to the hospital. What’s the harm in taking him?”
Call 911 if you notice any signs or symptoms of a stroke. If your child is experiencing symptoms of a stroke or other neurological emergency, they need to go to the ER right away. To find the nearest Wolfson Children’s Emergency Center, along with wait times, visit wolfsonchildrens.com/emergency. For more information about the Stys Neuroscience Institute at Wolfson Children’s Hospital, visit wolfsonchildrens.com/neuro.