The problem of delayed diagnosis of pediatric stroke

Fitzsimons BT, Fitzsimons LL, Sun LR. Laney’s Story: The Problem of Delayed Diagnosis

of Pediatric Stroke. Pediatrics. 2019;143(4):e20183458

Recounting the days of Laney’s first transient ischemic attacks (TIAs) and strokes and the horror and confusion that accompanied that time is something I would never wish on any parent. But if this article can help even 1 child receive a faster stroke diagnosis, then it is worth every painful word that I type.

First, I want you to know Laney. She had flowing auburn hair, an infectious smile with a gap in her front teeth, and an uncanny elegance for a 3-year-old girl. But a 3-year-old girl she was. She loved jumping in muddy puddles, “flying” around the house as Supergirl, and running around in circles until she was dizzy. She could put together a puzzle faster than some adults I know, manipulate a chocolate from her enchanted parents, and melt your heart with her big brown eyes. She was our whole life. In our minds, we were the happiest family on Earth.

It all began on May 7, 2016. We had recently returned from vacation, where Laney hiked miles every day in Sedona, Arizona. We will always remember these days as our best days. Laney, at 3.5 years old, was taking a bath when she suddenly started speaking with a slight slur. It was subtle, and we attributed it to her being tired.

Two weeks passed. We were in the kitchen when Laney started speaking with a slur and developed a facial droop. We called 9-1-1, and Laney was taken to a local emergency department (ED) where the doctor suspected she was having seizures. Laney was transported to another hospital where an overnight EEG revealed “seizure-like” activity, and the doctors recommended an MRI. Because this was a Sunday morning, with no anesthesiologists available, we were given the choice of keeping Laney in the hospital until Monday or taking her home and scheduling the MRI soon. We took Laney home to save her from the distressing hospital setting. There was no mention of stroke during either of these hospital visits.

Three days later, Laney experienced the same symptoms (slurred speech, drooping mouth and face, and trouble walking) but more severe. We rushed her to a different ED and showed the doctors and even a neurologist a video of the event. She was again diagnosed with seizures and discharged with a prescription for oxcarbazepine. There was no mention of stroke.

A week later, at Laney’s first neurology appointment, we showed the neurologist the video and described her symptoms. The neurologist diagnosed Laney with complex partial seizures and told us to continue oxcarbazepine. He said we could wait 3 months for the MRI to give Laney a break.

Laney’s Neurologist

Months before I met her, Laney had a series of TIAs consisting of dysarthria, facial droop, and inability to walk. In any adult, these would have been immediately recognized as a warning sign of impending stroke. But because Laney was 3 years old, they were misdiagnosed as complex partial seizures… 

Laney’s Father

Tragically, Laney had a severe reaction to oxcarbazepine. We took her back to the hospital, where doctors, in consultation with her neurologist, gave her lorazepam instead and discharged her.

After the hospital, we took Laney to the nearby Chuck E. Cheese’s. We ate pizza, took pictures, and played games. We won more tickets that day than we had in all our other visits combined. We were deliriously happy, if just for a moment. That was the last time we ever spent with our healthy little girl. I think about those joyful hours every day.

The following morning, almost a month since Laney’s initial symptoms, Laney woke up unable to stand, speak, eat, or drink. She wanted so badly to communicate, but the words would not come out as tears rushed down her cheeks. We called 9-1-1. The medics arrived as Laney was writhing on the floor. They did not consider stroke but instead administered epinephrine. In hysteria, Laney was transported back to the hospital. She was unable to stand or speak. Her heart rate climbed to ∼190 beats per minute, and I ran throughout the ED floor looking for a doctor to help Laney, who appeared to be dying in front of our eyes.

Our little girl was not talking and was barely moving. Laney was transferred to a larger hospital where doctors concluded that she was tired from her seizures. She had high blood pressure (which we now know was to help perfuse blood to her brain to prevent stroke), and they gave her medicine to lower it. Again, because no anesthesiology staff was available over the weekend, they could not do an MRI. There were no wheelchairs available, so I carried Laney’s limp body across the hospital to radiology for a head computed tomography scan. I will never forget that long walk.

Finally, on Monday, June 6, 2016, Laney underwent an MRI. The doctors informed us that Laney has suffered multiple acute strokes and had severe brain damage. This was the first time we had heard the word “stroke” since Laney’s symptoms began. We were devastated and frantically wanted to help her. We did not yet realize that this damage was permanent and that the Laney we knew and loved was gone…

Over the next months, Laney continued to have strokes as doctors struggled to stabilize her. Those days were filled with innumerous horrors. We never left Laney’s side and did not leave the hospital grounds for the entire summer. After months in the hospital and brain surgery, Laney was transferred to inpatient rehabilitation. She worked valiantly in speech, occupational, and physical therapy. Laney’s therapists were wonderful, and she began to laugh, smile, and regain strength. Laney was discharged that fall and continued in intensive outpatient rehabilitation. She worked so hard and even learned how to communicate with buttons and sit up on her own. Laney would even hold her little sister, whom she loved fiercely.

Laney’s Neurologist

I only met Laney after her prolonged hospitalization and inpatient rehabilitation, but she captivated me immediately despite being devastated by moyamoya disease, a cerebral vasculopathy that, in Laney’s case, was relentless and caused multiple strokes that stole her ability to move and speak. Reviewing Laney’s course, it was easy to identify in retrospect the delays in stroke recognition and cognitive biases, including anchoring, that contributed to the delayed diagnosis. But hindsight is 20/20, and given how common seizures are in children, it is not hard to imagine a thoughtful, capable pediatrician or neurologist making the misdiagnosis. Laney’s case is unfortunately not an exception. Multiple studies have revealed that the average time to diagnosis of childhood ischemic stroke is >22 hours. In 1 study, arterial ischemic stroke was only considered as a possible diagnosis in a quarter of cases of childhood stroke despite focal deficits being a part of the presentation in 86% of cases.…

Laney’s Father

Tragically, in December 2016, Laney suffered another stroke. After multiple failed medical interventions and visits to several medical centers, Laney was placed on hospice care. Our little girl finally succumbed and died on March 27, 2017. We kissed her little face and body until the second the funeral-home transport took her away…

Laney’s parents established the Laney Jaymes Foundation in 2017 with the missions of expanding pediatric stroke awareness, supporting research, and providing adaptive equipment to children who have suffered from stroke. Together, we identify clinical and research priorities that merge the goals of physicians and scientists with those of patients and families. For example, with guidance from Laney’s doctors, the foundation is actively funding research to better understand childhood cerebral vasculopathy, the most common cause of childhood stroke, and specifically moyamoya disease, the type of vasculopathy from which Laney suffered. The foundation both funds the research and helps guide its trajectory (with consistent collaboration between parents and physician scientists), incorporating both viewpoints and sets of priorities as we work toward the common goal of helping children like Laney.