My son Jared lay in a bed at NewYork-Presbyterian/Weill Cornell hospital, limp and pale, his 7-year-old body tethered to a tangle of tubes and monitor wires.
A neurologist, Dr. Maurine Packard, stood to his left. “Jared,” I recall her saying. “Pay attention to what I say.” And then, in a strong, firm voice: “The barn is red.”
She waited a few moments and asked, “What color is the barn?”
Jared started to answer, then froze. My wife and I, sitting behind Dr. Packard, froze too. Two days before, he had been a happy, athletic second grader, a beautiful boy who loved playing baseball and basketball in the park. Now he couldn’t walk; he had to struggle to remember the color of a barn.
He tried again, and then replied in a weak, slurred voice.
“No,” Jared said. Dr. Packard nodded, as if that was the answer she had expected.
Before June 23, 2008, my wife, Victoria, and I had never heard of a child’s having a stroke. Most people, many doctors included, still haven’t. In the agonizing months that followed, we heard it over and over: “But children don’t have strokes.”
How little we knew. It turns out that stroke, by some estimates, is the sixth leading cause of death in infants and children. And experts say doctors and hospitals need to be far more aggressive in detecting and treating it.
Dr. Rebecca N. Ichord, director of the pediatric stroke program at Children’s Hospital of Philadelphia, who continues to be deeply involved in Jared’s care, said that while conditions like migraines and poisoning could cause similar symptoms, “front-line providers need to have stroke on their radar screen as a possible cause of sudden neurologic illness in children.”
Dr. Heather J. Fullerton, a leading pediatric stroke researcher at the University of California, San Francisco, was even more emphatic. “When a child comes into an emergency room with strokelike symptoms,” Dr. Fullerton said, “it should be considered a stroke unless proven otherwise.”
MONDAY, JUNE 23, 2008, 3:30 P.M. The afternoon was glorious — warm, sunny and breezy. Victoria picked up Jared at P.S. 183 on the Upper East Side of Manhattan and walked with him to the nearby St. Catherine’s Park.
Suddenly, she saw him sit down, holding his head. She ran across the playground to find him dazed. “Mom,” he said. “My head hurts.”
Her first thought was dehydration. She gave him some water. After a minute, she asked him if he wanted to try to stand.
Jared rose but quickly began to stumble in an almost drunken zigzag. His left leg did not seem to be working. His words remained slurred, his gaze vacant. Then his eyes rolled up in his head.
Victoria scooped him up and ran one block east, to Weill Cornell. “Stay awake, baby,” she kept telling him. “Just stay awake.”
Slurred speech, droopy left eye, stiffness, a sudden inability to walk or even stand on his own: if an adult had come into an emergency room with similar symptoms, the staff might have quickly picked up these classic signs of stroke. But this patient was 7.
“Did your son eat any poison? Does he suffer from seizures?” my wife remembers being asked. She shook her head no. She called me at my office. “Something’s very wrong with Jared.”
In the cab to the hospital that afternoon, I did not know what to think. I certainly was not prepared for what was to come.
Jared would face months of treatment and rehabilitation. The stroke would take an emotional toll on our family, including Jared’s twin sister, Nicole, and younger brother, Teddy. Vicki and I would soon seek out top specialists at hospitals across five states. Yet we would never get a definitive answer as to what caused our child’s stroke.
MONDAY, 5 P.M. When I arrived, the pediatric emergency room was very busy. Jared was lying on a stretcher in a hallway. The attending doctor came over and asked him if he wanted to try to walk. The doctor helped him down, and Jared wobbled a few steps. He looked so awkward that I almost thought he was kidding around. The doctor grabbed him and had him lie back down. A CT scan was ordered.
I went outside and called Jared’s pediatrician and my own physician. Listening to my description, they speculated that Jared had suffered a seizure and that the symptoms might go away over time.
I went back inside. We took Jared for the scan. After a bit of a wait, we were told the results were normal.
While Jared seemed stable, his condition had not improved. The attending doctor suggested we give it a little more time. But by now it had been nearly four hours since he collapsed. What if he got worse? We were told a call had been made to the neurology department.
I stepped outside and called the department myself, saying it was an emergency. Dr. Packard quickly called back, and after a short discussion she said she would ask the E.R. doctors to send Jared for an M.R.I.
Within minutes, a neurology fellow arrived. Jared was asked to try to touch the tip of his nose with his right pointer. He missed, touching his left cheek instead. When asked to try the same motion with his left hand, he could barely raise it.
Jared was wheeled down hallways and into an elevator. I was told to wait outside the imaging room. All I could think was how terrifying it must be for my son, all alone, to be eased into that loud, white, tubular machine. The scans took 45 minutes. When it was over, the technicians told me Jared had done great, that he had actually fallen asleep for most of the test.
It was now 11:30 p.m., and the doctors wanted Jared to stay overnight for observation. We were moved to a regular room. Just after midnight, a nurse came into the room and said, as I recall, “We need to get him to the pediatric intensive care unit right away.” What seemed like a small army of doctors and nurses — Cornell’s stroke response team — rushed in and urgently wheeled away our sleeping son.
One doctor stayed behind to tell us the news: “Your son has suffered a stroke.”
By the time we got to the PICU, Jared was already hooked up to a host of machines. The doctor told us, “The stroke has occurred in an area of the brain called the cerebellum.”
I couldn’t get my mind around it. I kept saying to myself, “Children don’t have strokes.” My wife, tears streaming down her face, better understood the seriousness of the situation, asking: “If he had a stroke, what’s to keep him from having another one?” “Will he walk again?” “Does he have brain damage?”
The doctor told us that Jared’s stroke was small but serious and that he had been put on an anticoagulant to prevent another stroke. He was in for a lot of tests and, as we would soon learn, a long road ahead.
TUESDAY, JUNE 24 The next morning, Dr. Packard and Cornell’s chief of pediatric neurology, Dr. Barry E. Kosofsky, showed us the scans of our son. A small part of Jared’s brain had been damaged.
It appeared to be an ischemic stroke, the damage probably caused by a blood clot. The doctors praised my wife for her quick decision to get Jared to the hospital immediately.
“Time is brain,” doctors like to say, when it comes to treating stroke victims. Yet in pediatric stroke cases, studies show the average diagnosis does not take place until more than 24 hours after the onset of symptoms.
“A stroke interrupts the blood supply that brings oxygen to the nerve cells,” Dr. Packard explained later. “Without oxygen, the nerve cells die. The longer the blood supply is compromised, the greater the injury.”
Dr. Fullerton, of U.C.S.F., who later consulted on Jared’s treatment, agreed. “The injury does not just happen in the first hours,” she said. “It is ongoing for days. The sooner you intervene, the more you can help to mitigate the injury.”
My wife and I had not had a minute of sleep. We were doing our best that morning to follow along as doctors detailed several possible causes of a pediatric stroke. Did Jared have a hole in his heart? Did he have a blood disease? Any recent trauma?
Two weeks earlier, Jared had a collision while making a tag at third base in a Little League game. While it was a big fall, he appeared uninjured. Dr. Kosofsky said the most likely time frame for a stroke resulting from a trauma was three to five days, not two weeks.
Given that time frame, all I could think of was some fun we had had during a ride in our S.U.V. four days earlier. Jared and his brother had been wildly bopping their heads up and down to the soundtrack of “High School Musical.” Twisting the neck can cause arterial dissection (a tear in the lining of an artery) and a blood clot, we were told. If that clot broke free, it could travel to his brain.
Jared was sent for magnetic resonance angiography, advanced imaging of his head and neck. There was no evidence of any trauma or dissection.
WEDNESDAY, JUNE 25 Cardiologists put Jared to sleep and sent a small camera down his throat to get a closer look at his heart. There was no hole. Sonograms revealed no evidence of any other blood clots. Blood tests so far were normal.
Three days in one of the nation’s top pediatric intensive care units and still no explanation. I went home to get some sleep. As she did each night in the PICU, Victoria crawled into bed with Jared to cuddle him. Jared broke down crying. He told his mother he just wanted to go home.
Physical and occupational therapy began. Therapists took Jared for short walks down the hospital corridor. They asked him to try to connect two Lego bricks. They explained to us that they were helping his brain “rewire.” Jared needed to relearn the functions and abilities he had lost.
Dr. Packard and Dr. Kosofsky told us that recovery would take time, but that over time Jared’s brain would adapt and his condition would improve. “Most children after stroke do recover,” Dr. Packard said. “Some recover fully, some have residual deficits.”
My wife and I worried, would he ever recover completely?
The prospect of a recurrence haunted us. At Cornell, the doctors explained there was plenty of research on strokes and recovery rates in adults. But for pediatric stroke, the data was extremely limited. As Dr. Fullerton told me later, adult risk factors like hypertension and atherosclerosis “are not in play for strokes in kids, and we are now seeing lots of kids with stroke who were previously healthy.”
The rate of pediatric strokes has been growing in recent years, partly as a result of increased awareness and better reporting. Experts at Children’s Hospital of Philadelphia estimate that the rate in children under 18 is as high as 12 per 100,000, or about 9,000 incidents a year. And in newborns, they put it at 25 per 100,000 — a rate approaching that of elderly adults.
FRIDAY, JUNE 27 In the intensive care unit, Jared seemed to be improving. Four days after being stricken, he was walking the hallway on his own, although he was still a bit off balance. He could touch his nose with his right hand but still missed with his left.
Early on, doctors thought he might need to go to a rehabilitation center. But to our relief, they agreed he could go home — so long as Victoria and I kept him in our sight at all times. He was prescribed a daily dose of aspirin, which he would take for more than a year.
MONDAY, JUNE 30 Our concern about recurrent stroke led us to seek out other leading neurologists and researchers for advice. Dr. Fullerton, at U.C.S.F., took our call and agreed to review Jared’s case.
She told us the recurrence rate for all stroke victims could be as high as 20 percent in the first two years. If Jared fell into the “unexplained stroke” category, his risk of recurrence over time would become extremely low. She warned that he really needed to get through the first six months safely.
I took time off from my reporting job. My wife left her part-time work as a lawyer. We needed to help our son. We needed to keep him from sustaining even the slightest impact to his head or neck.
Dr. Fullerton suggested we call Dr. Ichord, at Children’s Hospital of Philadelphia. Dr. Kosofsky, who knows Dr. Ichord, agreed that soliciting her opinion would be valuable.
We canceled Jared’s summer camp plans. Rehab would be his summer activity. He embraced it as only a child can. The Cornell therapists worked on strengthening his left side. They had him put one foot in front of the other, go up and down stairs, relearn fine-motor skills like putting pegs in holes. Soon he could stand on one leg. He again learned to walk backward.
TUESDAY, JULY 8 Jared kept asking to play baseball again. The therapists said it would be good for him to play a simple, short game of catch with a tennis ball in our backyard.
I think I was more thrilled than he was to be actually holding our gloves. We stood about 15 feet apart. When he released the ball, it flew sideways into the bushes — 90 degrees from where I was standing. I retrieved the tennis ball, walked toward him and lobbed it slowly in his direction. He raised his glove but did not open it. His left hand was too weak, the messaging from his brain to his hand apparently still too delayed. The ball went right past him. Jared turned and eagerly retrieved it. He again tried to throw it to me. The ball again went sideways into the bushes.
It was the first time I saw Jared cry about having had a stroke.
THURSDAY, JULY 10 When we arrived in Philadelphia, Dr. Ichord ordered additional imaging. Her team of specialists went over Jared’s impairments, but she agreed with the Cornell doctors that he would eventually regain many of his abilities.
“The good news is the brain is able to compensate very well even when fairly extensive damage affects the cerebellum,” she told me later. “Moreover, children find a way to adapt to changes in the way their brain works. They often just figure out how to do the things they love doing, just in a different way.”
Dr. Ichord said Jared still faced weeks of rehabilitation. But he would be allowed to return to school in September. He would need some classroom support services, like occupational and speech therapy.
And he would be on the “disabled list” — no sports, no gym, no cafeteria, no recess. He could not take part in any activity where a blow to the head was even a remote possibility. The risk of recurrent stroke remained a real concern. Dr. Ichord asked us to return to Philadelphia every few months so she could assess his progress.
SEPTEMBER 2008 Back to school. Officials at P.S. 183, many of whom had never heard of a child’s having a stroke, provided Jared with the extra services he would need — occupational therapy three times a week, speech therapy twice a week. To keep him from the rambunctious cafeteria setting, he had lunch in the “peanut room,” where the children with food allergies ate, and he stayed behind as they went outside for recess.
At times he was frustrated. He missed playing sports and having regular play dates. “No one else in my class has a stroke,” he said more than once. Still, his math and reading comprehension were quickly improving. His brain, it appeared, really was rewiring.
FEBRUARY 2009 After the new year, Dr. Ichord gave Jared a green light to do some additional noncontact activities, like bicycle riding and swimming. She said some weakness on his left side remained. But she told Jared that by the one-year mark, if all went well, he would be back with his friends playing baseball and basketball, as long as he avoided contact.
Jared’s medical team was joined by an expert in pediatric neuropsychology, Dr. David Salsberg of the Rusk Institute at New York University, who followed him through the 2008-9 school year. Dr. Salsberg said tests showed that Jared was performing at or above grade level in many areas but that in others, like following multistep directions, his brain needed more time, more help.
“Strokes, like most acquired brain injuries, often are ‘invisible’ injuries,” Dr. Salsberg said. “It’s not like going back to school with a cast on. The deficits are not always so evident, but are often more devastating.” Some abilities would return within months, he said; others could take much longer.
JULY 2009 Dr. Ichord told us that since a full year had passed, the chance of recurrence in an unexplained case like Jared’s was very low. And she told us she was truly impressed with his recovery to date.
“Remarkably,” she said, “Jared found within himself the will and belief to get better, even though he had the insight and an awareness of what went wrong well beyond his years.”
He had received exceptional treatment, as well as wonderful support and compassion, from medical teams at four hospitals — Cornell, Children’s of Philadelphia, U.C.S.F. and N.Y.U. — and from hematology and genome researchers at Massachusetts General and Yale. But despite all their efforts, we never were able to find out what caused our 7-year-old son to have a stroke.
We know how lucky we are to have a good health insurance plan. The medical bills for Jared’s emergency procedures and intensive care approached six figures; follow-up visits and rehabilitation cost tens of thousands more.
Victoria and I often wonder aloud about other children in Jared’s place — children who lack the resources afforded to well-educated families with ample insurance, or whose parents may lack the confidence to press medical teams for answers.
Too often, experts say, a stroke in a child will be missed. It is in part why Jared agreed to let his father share this story.
POSTSCRIPT: AUGUST 2009 Each week, Jared’s summer basketball program ended with the same competition: a few kids were called to the foul line to try a free throw under gamelike pressure. About 150 campers sat on the floor of the Hunter College athletic center, eagerly raising their hands, hoping to be picked. A coach looked around, then pointed to Jared.
He smiled and stood up. As he made his way to the foul line, no one seemed to notice that he was jogging a bit stiffly. Or that his left arm, bent at the elbow, was pressed into his side.
Jared took the ball. The other children began waving their arms and screaming in a gleeful effort to distract him: a team jersey and other prizes were on the line. Jared looked up at the basket and gave a big shove with both hands. The ball hit the backboard and went in.
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