Jase Amesbury climbed on his red tricycle and pedaled around the driveway, a blur of high energy and happy laughter.
His parents watched, soaking it all up.
Just a year earlier, this carefree moment seemed far from certain.
A bout with influenza hit Jase so hard he ended up on life support. Abby and Ryan Amesbury worried whether their little boy would ever walk or talk again—or even live to see another day.
It took state-of-the-art technology and a search for just the right medication to set him on the path that led here—playing in his driveway on a chilly spring afternoon, a 4-year-old boy without a care in the world.
“The amount of gratitude I have for everyone who helped us—there are no words to describe,” Abby said.
And the Amesburys will never look at the flu, or the flu vaccine, the same way again.
Going downhill fast
The illness started in an ordinary, unalarming way in January 2018. Jase, then 3 1/2 years old, had a runny nose and a low-grade fever. His parents thought he might be cutting a new tooth.
Over the next two days, his fever grew worse and he developed a cough. The Amesburys took Jase to the pediatrician’s office near their home in Boyne City, Michigan. He tested positive for influenza.
“It was a very fast downhill slope from there,” Abby said.
Fluid filled Jase’s lungs and he struggled to breathe. His medical team placed him on a ventilator. They changed the mode to a more intensive, oscillator setting.
Still, his lungs continued to decline. Pediatric surgeon Emily Durkin, MD, told the Amesburys he needed more intensive help.
‘A last resort’
Dr. Durkin placed him on a heart-lung machine known as ECMO, or extracorporeal membrane oxygenation. The life-support device connected to Jase’s blood vessels, circulating his blood through an artificial lung and back into his bloodstream.
“This is a last resort and used only in children who will otherwise die if we cannot boost their oxygen levels any other way,” Dr. Durkin said. “It also helps to avoid damage that can occur to young children’s lungs when we have to use high ventilator settings.”
Jase was so fragile his doctors closed the pediatric intensive care unit and performed the procedure at his bedside. They didn’t want to risk transferring him to an operating room.
Initially, Dr. Durkin connected Jase to the ECMO machine through his veins, providing support for his lungs. Over the next three hours, the medical team worked together, adjusting the machine’s settings.
Still, Jase’s condition deteriorated. His heart began to fail.
The team then switched to a different form of ECMO, connecting to an artery and a vein, to support his heart as well as his lungs.
“It was very touch-and-go for several hours,” Dr. Durkin said. “Many doctors from the entire team were present at his bedside, including two surgeons and three pediatric intensive care unit physicians.”
Parents can’t predict if their child will recover from the flu or end up critically ill like Jase, which is why the vaccine is so critical.
Meanwhile, Abby and Ryan sat in a waiting room, accompanied by family members and close friends. They felt exhausted—so many sleepless nights, so many days terrified about losing their son. And Abby was seven months pregnant.
They struggled to comprehend how quickly Jase had become critically ill.
Just a week earlier, he had been running around, playing with Hot Wheels and pretending to go on “fire runs,” just like his firefighter dad.
“I was just kind of numb to everything,” Abby said. “It was hard to take it all in. I was like—how did this happen? He just had the flu.”
That winter was the first year Jase did not get a flu vaccine. Abby thought about it when Jase saw his doctor in late summer, but decided it was too early for the vaccine. She planned to return later for the vaccination.
“But life just happened, I didn’t get him back for it,” Abby said.
Now, she said: “Everybody gets one.”
“I never had one until this year,” Ryan said. “I’ll get them every year.”
Dr. Durkin applauded their commitment to flu vaccines for their family.
“Every year, at least one child at Helen DeVos Children’s Hospital needs ECMO due to the flu,” she said. “Often these are otherwise normal, healthy children who just have a very severe response to the infection.”
“Parents can’t predict if their child will recover from the flu or end up critically ill like Jase, which is why the vaccine is so critical.”
Not waking up
For six days, Jase remained on ECMO as the machine provided the oxygen his body needed. As his oxygen levels and lung function improved, the time came to remove the device and the sedatives.
But then, a new concern emerged.
“He never moved. He didn’t really wake up. He didn’t open his eyes,” Ryan said.
His lack of response troubled his medical team. An MRI scan showed Jase had acute necrotizing encephalitis, a brain injury caused by influenza A and other viruses.
Doctors believe the injury occurs when a virus or antibodies attack the basal ganglia, structures deep within the brain, said Steven DeRoos, MD, a pediatric neurologist with Helen DeVos Children’s Hospital.
Ryan and Abby asked if Jase would ever wake up. And if he did, how would the brain injury affect his ability to function?
His doctors couldn’t give a definitive answer, because there is such variation among children who develop this brain injury.
“The rule of thumb is that a third will die, a third will experience significant disability and third will go on to have a good recovery,” Dr. DeRoos said.
A first, small sign of hope
Thomas Pott, MD, a pediatric critical care fellow at Helen DeVos Children’s Hospital, had been involved in Jase’s care from the day he arrived at the hospital. He began to research treatments for the rare condition.
Reviewing medical literature worldwide, he found a case study about an adult who had positive results with an antiviral drug, Peramivir.
The drug is similar to Tamiflu, the antiviral typically used to treat influenza. But Peramivir, which is given intravenously, offered a possible advantage.
“The big thing I focused on is that it binds to the receptors with a much higher affinity than Tamiflu,” Dr. Pott said.
Jase received Peramivir for six days, in addition to high doses of steroids and immunoglobulin.
The first sign of a response came around 3 a.m. one day. During a routine neurological exam, Dr. Pott asked Jase to squeeze his hand. For the first time, Jase responded, curling his fingers forward.
The doctor called Abby and Ryan and woke them. “You need to come down here now and see him,” he said.
Abby remembers hurrying to Jase’s bedside. When the doctor called his name, Jase opened his eyes.
“It was really cool to see, but almost scary,” she said. “He wasn’t focused on anything.”
It was just the beginning. Jase soon began to move his arms. He responded when someone tickled his foot. He picked up a soft, toy snowball and threw it to his dad.
“Over the course of the next week, he drastically improved,” Dr. Pott said.
After three and a half weeks at Helen DeVos Children’s Hospital, Jase transferred to Mary Free Bed Rehabilitation Hospital, where he continued to improve rapidly with therapy.
A new MRI scan reflected all the changes Jase’s family and caregivers witnessed.
Dr. Pott showed the first one, taken when Jase came off ECMO. Light patches, indicating swelling, wove throughout the image of the brain.
“In his three-month follow-up, all the edema (or swelling) that was there is completely gone,” he said.
He has come so far. I feel like now we are on a really good path.
Jase returned home to Boyne City on March 15, 2018. It had been seven weeks since a helicopter had rushed him to Helen DeVos Children’s Hospital.
“It was awesome,” Abby said. “It was very emotional driving home. Once we got in the car, we realized not only are we going home, but our son is going with us.”
Throughout the ordeal, the Amesburys received an outpouring of support from their community. Local schools and fire departments throughout northern Michigan hosted fundraisers to help the family.
Knowing the kids were eager to see Jase, the family arranged a thank-you visit. Jase rode in a fire truck and waved at the students as they left school one afternoon.
“It was a pretty remarkable recovery,” Dr. DeRoos said. “He’s a great example of always pressing forward.”
He praised the parents’ patience and dedication to Jase as key factors in his success.
“It’s like the perfect family,” he said. “They are very supportive. They adapted the best you possibly could.”
The big brother
Jase continues to receive therapy and care from pediatric specialists. The optic nerve in his left eye was damaged and his parents say he may need surgery in the future.
But they look forward to helping him through whatever challenges lie ahead. They take heart just in seeing him run around the house, go to school, ride his bike and create Play-Doh creatures. He loves his baby sister, Lennon, who was born six weeks after he came home from the hospital.
“I can’t believe how fast he is coming along,” Ryan said.
“I’m optimistic about (the future),” Abby said. “He has come so far. I feel like now we are on a really good path. I count my blessings day in and day out that Jase is not only with us, but that he continues to thrive.”
And they hope the knowledge gained in saving Jase will benefit other children.
Dr. Pott presented a case study at the Society of Critical Care Medicine annual conferences in February 2019, detailing how the IV antiviral drug aided his recovery.
“Granted, the number is only one, but one makes a difference,” he said.
His presentation included short video clips of Jase’s progress as his brain healed. Watching the last clip, showing Jase easily climbing up a playground rock wall, he marveled at his dramatic comeback.
“I think I will remember this forever,” he said.