Uniting to Fight an Unexpected Foe

In 11 years as an emergency medical technician on the ambulance crew in Darien, Conn., Claudia Newton had administered a simple test for stroke many times. But always to older people.

Now she stood in her own living room. She asked her 11-year-old son Alex to close his eyes and hold his arms straight out, palms up. His left arm drifted down. She had him do it again. His left arm drifted down.

It was a snow day. Claudia believes that may have saved Alex, because he told his mom when his left leg was tingling in the morning and a few hours later that the strange feeling was now in his arm. “Then he said, ‘My face is tingling,’ and that’s when the hair on the back of my neck stood up,” she says. She ran the stroke test. Then she put Alex in the SUV and drove through the snow to the emergency room.

An MRI confirmed the fears of Claudia and her husband, Bob: Alex had suffered a stroke. They were dumbfounded. Stroke is caused by a disruption of blood supply to the brain, most often due to a blood clot or narrowing of a vein or artery. Without enough oxygen, the brain quickly suffers irreparable damage. Stroke is the sixth leading cause of death in children. Yet pediatric stroke is often unrecognized, even by first responders and emergency room staff whose decisions can reduce the time to diagnosis — and the damage.

Claudia Newton, for example, had never been trained to consider stroke for ambulance calls involving children. But her instincts as a mother and EMT helped Alex get help quickly on that day.

It was the beginning of a very difficult road. “It’s a journey you don’t want to go on,” Claudia says.

After his first stroke, Alex was put on daily aspirin to thin his blood. Ten months later, he had a larger stroke. While he was in intensive care at a hospital in New York City, a doctor there told the family to call the leading expert on pediatric stroke: Rebecca Ichord, MD, at The Children’s Hospital of Philadelphia.

Since then, the Newton family has made the 3½-hour drive to Philadelphia many times to visit Ichord and the Pediatric Stroke Program team, including Julie Neitzke, RN, BSN, the nurse who listened to Claudia cry during her first call. “I sobbed on the phone, and Julie’s compassion was what I needed,” Claudia says. “To be at CHOP is a gift. Dr. Ichord makes you feel like you’re the only patient and the only family she has because of the time she gives and her commitment.”

During one of their appointments, Claudia was struck by the number of children she saw who were being treated after strokes, many in wheelchairs, and the relatively small amount of support for research into pediatric stroke. “It has been shocking to learn about pediatric stroke and how many children don’t have the kind of outcome that Alex has had,” Claudia says.

She gathered a group of friends into a committee, and they organized a “Night of Hope” dinner and silent auction in Darien, raising $58,000 for Ichord’s research at Children’s Hospital. Alex’s older brother Jack and his college fraternity have gotten involved, too, recently raising $5,000.

Ichord is part of an international consortium investigating possible causes and new treatments for pediatric stroke, including the use of thrombolytics, often called “clot busters,” in children. Thanks to the Newtons, Ichord has been able to hire a full-time research coordinator, which increased what she and her team could accomplish in their studies.

"There’s a huge, growing undercurrent of advances in laboratory research in the neurosciences, and we need to be able to find ways to translate those findings safely to patients,” Ichord says. “There are just amazing opportunities right now, but there’s a huge gap between the work that needs to be done and the dollars to do it.”

The “Night of Hope” was Claudia’s first foray into fundraising. She intends to repeat the event next September. “It was as simple as asking. That was the hardest part, just asking,” she says. “Once you ask, people will bend over backward to help. It’s not as daunting as it looks, and the reward is so widespread and meaningful.”

Though he has now had three strokes and suffers migraines, Alex’s cognitive impairment has been minimal, and he maintains good grades. Now 13, he is on two medicines and sees a hematologist at CHOP who is investigating rare blood disorders as possible causes of his strokes.

“Alex is a curious boy who is full of joy,” Claudia says. “He teaches me and often consoles me and tells me it’s going to be OK. Because of the latest stroke, all of the fear is back. But we have a tremendous amount of hope. In his lifetime, our wish is that research will get to a point that these children don’t have to suffer.”