May is National Stroke Awareness Month, a good time to remember anyone can have a stroke.
Shelby and Phil couldn’t believe their luck after their two healthy, happy twin boys were born.
It was textbook. “Luke and Logan both slept well, and they ate well. Everything was going great,” Shelby recalls. Then time stopped for a moment or two.
It was like any other morning. Luke and Logan, then 10 months old had just woken up and were playing when Luke started crying. Shelby found him in a strange position, lying face down with his arm behind his back. She called Phil to come take a look, but after a few moments, he was fine. She walked away, but then heard him crying again.
The seizures had begun.
Out of nowhere.
Logan, who was fine, barely noticed. Right away, they rushed Luke down the street to Sarasota Memorial Hospital where family met them to take care of Logan while they focused on Luke.
“They did every test possible to determine what was going on," Shelby recalls. "They gave him seizure medication, a spinal tap, an MRI. They thought it might be meningitis. The seizures continued. Then they called Johns Hopkins All Children’s Hospital.”
LifeLine, the Johns Hopkins All Children’s critical care transport team, rushed to Sarasota Memorial to pick up Luke. The team is trained to administer expert care en route.
The Emergency Center and neurological specialists were waiting to determine the cause of Luke’s seizures. More testing was immediately done. An EKG, another MRI. They were determined not to put him through another spinal tap, so they asked dozens of questions that would help them rule unnecessary tests out,” Shelby recalls. “I have to say, a stroke wasn’t even on our minds. We didn’t know babies had strokes.”
“Luke had a childhood arterial ischemic stroke with focal cerebral arteriopathy,” explains Neil Goldenberg, M.D., Ph.D., who started the stroke program at the hospital and is a professor of pediatrics and medicine in the division of hematology at the Johns Hopkins University School of Medicine. “An ischemic stroke is one in which a blood vessel in the brain is blocked or there was too little blood flow to the brain. Focal cerebral arteriopathy is a narrowing and irregular contour of one of the main cerebral arteries. This is found in up to 50 percent of childhood cases.”
Luke was carefully monitored in the hospital for five days, most in the pediatric intensive care unit (PICU). It was determined he did have rhinovirus—a frequent cause of the common cold. Research has suggested that recent infection by one of a variety of viruses may cause an inflammatory response that results in narrowing of the internal carotid or middle cerebral artery, predisposing to stroke.
During his bi-annual Stroke Clinic visits, Luke is also seen by Dennis Hart, M.D., senior director of pediatric rehabilitation and assistant professor of pediatrics at Johns Hopkins All Children's. The clinic is organized to coordinate visits with specialists in areas such as hematology, neurology, neuropsychology and rehabilitative medicine on one trip. Hart's role in the clinic is to assess functioning skills and whether patients are able to do age-appropriate tasks. He refers stroke patients to the specific therapy that will best work for them based on their diagnosis, working closely with speech, physical and occupational therapists.
"The greatest benefit to the Stroke Clinic for our families is having all of these highly skilled specialists, nurses and physicians in the room together to explain the diagnosis, treatment and follow-up care," Hart explains. "Parents can get all of their questions answered at once and know that their doctors are working closely together for the best treatment plan possible for each child we see. Our families feel very strongly that this is the best way to treat our stroke patients."
"Seeing all of these professionals separately could mean four or five trips to the hospital and rehab centers for care. It's a wonderful program, and I'm very proud to be a part of it," Hart concludes.
During his last visit, Luke also saw Peter Huszar, M.D., his pediatric neurologist, and Goldenberg, his hematologist. Together they discussed management and treatment strategies and took questions from Luke's eager parents. Luke has made a near-complete recovery, but he will continue to be monitored closely as his development progresses and he takes on more complex tasks.
Luke continues to receive daily aspirin and anti-seizure medicine he has taken since the time of his initial diagnosis. On this regimen, he has been free of any recurrent stroke and has avoided any bleeding complications. His narrowed artery is being monitored by follow-up magnetic resonance angiogram (MRA) scans of the brain.
Having a twin to continue to challenge him has probably helped Luke’s therapy and recovery,” Goldenberg adds with a smile, “and has also provided his parents a continual comparator for whether Luke appears to be on track with Logan.”
“It was so impressive. I know Luke isn’t the only baby to have a stroke, but every step of the way, the team of specialists was all focused on him like he was the only child there,” Shelby says. These days, Luke is doing fine. He continues to use the Johns Hopkins All Children's Outpatient Care, Sarasota, location for physical and speech therapy and will return to the Stroke Clinic in six months for another evaluation. His parents are grateful for the care they have received at Johns Hopkins All Children’s and the access they have to specialists within the Stroke Clinic. “He’s a miracle baby. We know he’s here for a reason,” Shelby concludes. “God has a plan for him.”
Johns Hopkins All Children's Stroke Clinic
Primary specialties involved: Neurology, hematology, physical/rehabilitative medicine and neuropsychology
Clinic availability and location: First and second Thursday of the month in the Outpatient Care Center, 601 5th Street S., St. Petersburg
Conditions treated: Perinatal stroke, arterial ischemic stroke, hemorrhagic stroke, cerebral sinovenous thrombosis, moyamoya disease
Referral: Please send referrals to neurology by fax: 727-767-2590
For more information: Call the Stroke Clinic at 727-767-8407