Kynlee's Story: When a Child Has a Stroke

Parents expect their toddler to be a little moody sometimes. So Autumn and Darrell Thomas didn't think much about their daughter Kynlee's irritable and lethargic behavior.

But when they realized she wasn't using her left arm, they became alarmed.

Autumn admits it took a little bit to be concerned because the last thing on her mind was that her young daughter could have a stroke.

"I didn't even know kids could have one," Autumn said.

Kynlee was born on March 5, 2015, in Oklahoma. Autumn and Darrell hoped for a healthy child, after watching their oldest daughter, Addison, now 9 years old, battle cancer throughout her young life.

But from the beginning, Kynlee faced health problems. She was born with bladder dysfunction and was cared for by Blake Palmer, M.D., a pediatric urology specialist and surgeon. 

"Our older child faced so many medical problems and we kind of became used to having something wrong with our child," Autumn said. "But to have another child with medical issues was very emotional."

Even with everything they had gone through at this point, nothing prepared Autumn and Darrell for what occurred on May 2017 in their little town of Coyle, Okla.

When things didn't change with Kynlee's left arm, they went to their local ER where Kynlee was initially diagnosed with a stroke. She was transferred to a larger hospital in Oklahoma, and after a lengthy hospitalization, the family returned home with limited information about Kynlee's condition.

Once again Kynlee started having similar stroke symptoms in July 2017, but these were thought to be seizures. At first doctors placed Kynlee on seizure medication, but that didn't work because that wasn't effective against the little girl's mini strokes.

At the same time this was going on, doctors found Kynlee needed heart surgery to repair a hole they found in her heart. Kynlee had been scheduled for cardiac surgical repair at another hospital in July 2017, but it was canceled due to high risk and complexity of her medical condition.

Autumn and Darrell were at a loss by the end of the year and struggling to find some hope for their daughter's condition. They found it in an old friend. Dr. Palmer had moved to Cook Children's and was still seeing Kynlee for her urological condition. He suggested Kynlee be seen by Cook Children's Comprehensive Stroke and Thrombosis Program.

Lori Buechler, a nurse in Urology who works with Dr. Palmer, coordinated the family's care with Jo Tilley, the stroke and thrombosis PNP, to transfer records, imaging studies and complications involved with dealing with multiple specialties.

"Dr. Palmer and his nurse Lori have always been there for us," Autumn said. "I'm not sure we could survive without their help."

The Thomas family arrived at Cook Children's Stroke Comprehensive Clinic in January 2018. "We saw the stroke team," she said. "And I mean it was a team. We saw everyone you could think of. We stayed three days at Cook Children's and we found everything in three days that we had waited months to find out. We had a diagnosis. They performed four or five tests that no one had ever performed on her in Oklahoma and she was seen by every specialist you can imagine in that time

"When she got here, Kynlee's condition was severe and significant, which placed her at imminent risk for further harm due to stroke or cardiac arrest," said Fernando Acosta, M.D., a neurologist and associate medical director of Stroke and Thrombosis Program at Cook Children's. "We felt it was in Kynlee's best interest to be admitted as quickly as possible for further investigation." Marcela Torres, M.D., a hematologist and director of the Stroke and Thrombosis Program at Cook Children's, agreed with Dr. Acosta. Kynlee was in a precarious state because, despite her preventive antiplatelet therapy, her congenital heart disease would likely also affect her brain perfusion. So, after her admission, several sub-specialists were quickly consulted, including Cardiac ICU, Cardiology, CV surgery team and Sami Hadeed, M.D., a pediatric pulmonologist.

During her initial admission, Kynlee was placed on the Epilepsy Monitoring Unit without any antiepileptic medication. The EEG showed no signs of epilepsy and she was taken off of her medication. Imaging indicated Kynlee did have a new stroke to her right front lobe. This explained Kynlee's earlier episodes where she lost movement on her left side.

Prior to genetic testing, Kynlee was initially diagnosed with a cerebral vasculopathy, similar to Moya Moya syndrome, a rare disease that affects arteries in the brain.

"Kynlee's treatment plan is an example of the complexity of a pediatric stroke patient," Dr. Torres said. "Because of our stroke program and our involvement with the International Pediatric Stroke Society and pediatric research studies, we are able to provide patients with the highest level of pediatric stroke care."

Then there was that matter with Kynlee's heart. Cardiology completed an echocardiogram and formal evaluation. Vinod Sebastian, M.D., a pediatric heart surgeon at Cook Children's, performed the surgery on Kynlee in late January to complete closure of her aortopulmonary window.

"It was definitely a relief and comfort just because we had people on our side who knew what was going on and wanted to help us," Autumn said. "But also because it was all happening so fast, it was just kind of ... 'WHOA!'"

Along with everything else going on with their two daughters, major changes were occurring in the Thomas household. Autumn delivered her third child, a boy named Parker, in January 2018. Parker was staying at the Ronald McDonald House near the medical center with Darrell, who had recently been laid off from work.

The family was discharged in early February and Kynlee and her parents returned to Oklahoma. Everything was fine Friday and Saturday, but on Sunday Kynlee lost the feeling in her left side again. She was taken to an emergency room in Oklahoma where scans verified another stroke. She was transported by helicopter on that Monday back to Cook Children's. Once at the medical center, she lost movement on her right side as well.

Kynlee remained in the pediatric intensive care unit for a week. Doctors found she wasn't getting enough blood flow to her brain due to her progressive cerebral vascular disease. Pediatric specialists from Neurology, Hematology and Cardiology monitored Kynlee as they balanced her medications to treat her blood pressure and decrease her chance of another stroke.

Over the next week, doctors eventually found the right mix of medications to increase her blood pressure enough to improve the perfusion of her brain. She was monitored closely.

Kynlee also showed improvement in functionality. At the time of discharge she was able to crawl and was recommended for an orthotics consult, as well as outpatient physical and occupational therapy.

Since her discharge, Kynlee's genetic testing that had been ordered at Cook Children's, came back. She was diagnosed with an ACTA2 gene mutation, which causes people to be predisposed to vascular disease including strokes, coronary artery disease and aneurysm.  Autumn says the entire family plans to go through genetic testing for the gene as well.

Things are looking up for the Thomas family. Darrell has a new job. Their older daughter is doing well and Parker shows no sign of any health problems. Kynlee is back home in Oklahoma and doing well thanks to the medications doctors at Cook Children's diagnosed specifically for her condition.

"Kynlee is starting to walk again," Autumn said. "She hasn't been able to walk since her stroke in February. She's doing great. I'm watching her trying to feed her baby brother a Barbie doll bottle."

Autumn laughs. She welcomes this very typical, very silly problem.

They have come such a long way just to feel their own sense of normal.

Stroke and cerebrovascular diseases are within the top 10 causes of death among children and up to 70 percent of stroke survivors have residual neurological impairment.

Because the causes and symptoms are so different, treating stroke in children requires specialized training. Cook Children's Comprehensive Stroke and Thrombosis Program is one of 16 such centers in the U.S. As members of the International Pediatric Stroke Society, the Cook Children's team works with a network of other pediatric hospitals to improve stroke care worldwide.

The program is led by Medical Director Marcela Torres, M.D., a hematologist/oncologist and Co-Director, Fernando Acosta, M.D., a neurologist.

The team is committed to the early recognition, treatment and prevention of pediatric stroke through research, innovation and education.

The program allows patients to be seen by multiple specialists at once, instead of scheduling numerous visits. Patients can see pediatric sub-specialists from:

• Hematology
• Neurology
• Neurosurgery
• Neurodiagnostics
• Neuropsychology
• Interventional Radiology
• Social Worker and Child Life