Shawn and Jamie Childs’ world came crashing down on Oct. 20, 2017 in a way they didn’t know was possible.
Their 5-year-old daughter, Makenzie, was lying in a bed in the Mary Bridge Children’s Hospital emergency room.
“The doctor came in and said, ‘Your daughter has had a stroke, the damage is irreversible and there could be a hole in her heart. Are there any questions?’” Jamie recalled.
Until then, the Childs didn’t know a stroke could happen in children. Wasn’t that something that happened to older adults?
“It was a very big gut punch,” Shawn said.
But at that point, the diagnosis made sense. Nothing on Makenzie’s left side was moving, she had difficulty speaking, she was confused.
“I just looked at (Shawn) and said, ‘This can’t be it’,” Jamie said. “10 hours ago she was running around a pumpkin patch like a normal kid.”
FROM MAZE TO ER
Makenzie started that October day with all the expectations a 5-year-old can have in the days just before Halloween. Her grandparents were taking her to a pumpkin patch and corn maze.
Unknown to anyone, Makenzie had a blood clot somewhere in her body. As Makenzie walked through the corn maze that day, the clot traveled to her brain.
Without warning, she fell on some soft cornstalks.
She didn’t hit her head, so her grandparents weren’t too concerned. But on the car ride back to her grandparents’ home, she got sick in the car.
“She was inconsolable,” Shawn said. “(They) couldn’t get her to stop crying.”
The grandparents put her in the bathtub.
“She started rolling over and almost going face down in the water,” Shawn said.
After the bath, she just wanted to sleep.
“Normally, you had to fight her to get her to do that,” he said.
Shawn arrived and within a few minutes was on his way to urgent care with Makenzie. Jamie left work to join them.
The doctor had her run up and down a hallway. Her speech was slow but not slurred.
“He diagnosed her with a concussion and told us to wait and see how she was in the morning and sent us home,” she said.
Before he did, he told them if she gets worse, or if they feel something isn’t right, take Makenzie to an emergency room.
Things got worse.
Normally, Makenzie would jump from the car and fling off her shoes as she ran into the house.
This time, she couldn’t even negotiate the step up to the door.
“She couldn’t quite coordinate figuring out how to take her shoes off,” Shawn recalled. “She was just sitting, looking at her feet.”
She got sick again. Shawn took her to the bathroom.
“Shawn called me into the bathroom,” Jaime said. “He said, ‘Hey Jaime, you need to check this out’.”
Shawn told his daughter to smile for mom.
Makenzie was only using the right side of her face to smile.
“It was the smile that changed our lives forever,” Jaime said. “Her (left) eye wouldn’t focus,”
Makenzie, until then, had been healthy. The Childs knew they had to get her expert medical help but were paralyzed with indecision.
“I called a friend from work, and she said, ‘Take her to Mary Bridge’,” Jamie said.
Within minutes of arrival, they were in an examination room. Jamie’s sister, Annette, soon joined them.
A doctor told the family it could be one of three things: epilepsy, migraine or stroke.
“When she said stroke, my heart kind of stopped and I turned to my sister … ‘Did she just say stroke’?” Jamie said.
Around midnight Makenzie had the MRI that would confirm the stroke.
Some 50 visitors saw Makenzie during her first full day in the hospital. Shawn asked each one of them if they knew about childhood strokes.
“Not one single person … had ever heard of a child having a stroke,” he said.
Stroke strikes 11 in every 100,000 children annually, according to the American Heart Association. It can even affect babies in the womb.
Because Seattle Children’s Hospital is more equipped to handle the rare condition, Makenzie was transferred there after five days.
“They had already been in contact with the Mary Bridge physician team, so they were a 100 percent up to speed on where we were, where she came from and what happened,” Shawn said.
From day one, Makenzie was put into therapy. That’s where Dr. Catherine Amlie-Lefond, a professor of neurology and director of the pediatric vascular neurology program, first saw her.
“She’s an incredible kid who loves to dance and move and was very motivated to improve,” Amlie-Lefond said. “Her parents did a great job of encouraging her and supporting her as she did that.”
Makenzie spent eight hours a day, six days a week in educational, physical and occupational therapy.
“There were huge gains, there were setbacks,” Shawn said. “It was hard to get her to walk.”
When, during her second week of recovery, Makenzie seemed to stall, some thought that might be as far as she would go. Her left hand was still motionless.
Then Makenzie began grabbing things with her left hand. At first, doctors thought it was just a reflex.
Her mother suspected Makenzie was too shy to squeeze a doctor’s hand. Jamie gave her an Iron Man doll and told her to squeeze it.
Makenzie popped its head off.
“I think the recovery we see in children often is incredible and miraculous,” Amlie-Lefond said. “Children have an ability to, in many ways, do better than adults in stroke.”
As the Childs learned that pediatric strokes were as common as many other major childhood illnesses like brain tumors, they knew they had to get the word out.
They also know they are lucky because Makenzie was in medical care just hours after her first symptoms. Many children go misdiagnosed, leading to further brain damage or even death.
“It’s not as quickly debilitating to (children) as it is to an adult,” Shawn said.
“If you have a child, if you work with children or if you know a child in your life, you need to know that pediatric strokes happen,” Jamie said. “And you need to know the signs and the symptoms.”
Some of the earlier symptoms that Makenzie had could easily have been something else.
“I certainly don’t want a family to feel that they should have known that that vomiting wasn’t the flu but was in fact a stroke,” Amlie-Lefond said. “Because that’s an impossible task.”
Some parents, following their child’s stroke, can be extremely hard on themselves, Amlie-Lefond said. They think they should have seen the signs of a stroke.
“There’s usually no way they could have known,” she said.
Makenzie was sent home 25 days after her stroke. Now, she has therapy once a week.
A year-and-a-half later, Makenzie is matter-of-fact when she sums up her hospital stay.
“They had me move my hand, and they helped me talk,” she said. On this day in May, she’s wearing a pink and purple flowered dress.
Her long, brown hair flows from underneath a tiara as she runs outside to play.
“Remarkable, miraculous,” is how Jamie describes Makenzie’s recovery. “We’re blown away.”
The Childs say their daughter is about 95 percent compared to before the stroke. She wears a brace on her left leg. She favors her right hand.
Makenzie, a competitive dancer before the stroke, was back to dancing after a month home from the hospital.
While Makenzie’s recovery is remarkable, Amlie-Lefond cautions that young patients like her still face lifelong challenges.
“There can difficulties with depression and PTSD and mood following stroke,” Amlie-Lefond said. “There can be ongoing challenges in school.”
A former childhood stroke patient might not recall their stroke when they are an adult but might be frustrated by a hand that doesn’t work like other people’s.
“We want them to have a full life with everything possible,” Amlie-Lefond said. “So, they need support and insistence and encouragement early on. But they may need resources throughout their lifetime. It is the long-term picture that matters as much as anything else.”
Strokes and warning signs
▪ Ischemic: Blood flow to a part of the brain is cut off. The causes can be numerous but blood clots are the most common. In some cases, a clot has moved into a brain artery from another part of the body. In other situations, a clot can arise from an abnormality in a brain artery.
▪ Hemorragic: A blood vessel inside the brain ruptures and bleeds.
▪ A sudden weakness on one side of the body.
▪ Difficulty speaking and with language.
▪ Sudden numbness on one side of the body.
▪ A change in the ability to function.