By AMERICAN HEART ASSOCIATION NEWS
Not long after her daughter Addison was born, Kaysee Hyatt had a feeling something was wrong.
By the time Addison was 4 months old, she still had extreme fussiness and a hard time eating and sleeping, and seemed to always clench her left fist. She also didn’t seem to play with toys using her left hand.
At Addison’s six-month checkup, the pediatrician said it could be a nerve issue or, worst-case scenario, evidence of a stroke. Addison would need an assessment for potential developmental disabilities or delays.
The Hyatts, who live in Renton, Washington, took Addison to a neurologist. An MRI confirmed she had survived an ischemic stroke at some point during the 28 days before or after her birth.
Stroke in babies occurs in one in 3,500 births and is the leading cause of hemiplegic cerebral palsy, or paralysis on one side of the body caused by a brain injury.
Doctors conducted extensive testing but were unable to determine what caused Addison’s stroke. That did little to allay the waves of guilt Hyatt experienced.
“When you’re hit with a diagnosis like this, you feel like you didn’t do your job as a parent,” she said.
Hyatt researched local support groups and services, and began intensive therapy to help Addison learn to use her left side, speak and cope with other challenges resulting from the stroke, a leading cause of disability in the United States.
Addison, who turns 3 in December, has made important strides over the past two years and has learned to work around her disability.
“We call her our fireball,” Hyatt said. “It doesn’t matter that her left side is weaker, she just does what she wants.”
In April, Addison achieved a major milestone when she began walking without the help of a walker, a feat that took months of therapy to build the stamina and strength she required. She also began using both hands for some tasks.
Her speech continues to be delayed, but is making progress. Otherwise, she’s an ordinary preschooler who loves playing with Bella, the family’s pet boxer, and her 13-year-old brother, Wyatt Kilcup.
“Therapy and appointments have become our new normal,” Hyatt said. “We really had to build a village for Addison to learn how to help her at home and build a lot of support for her.”
It helped to connect with support groups where they could talk with other families about coping with day-to-day challenges and anxieties.
“Knowing we weren’t alone was important,” Hyatt said.
Hyatt works to raise awareness about pediatric stroke and formed the nonprofit Pediatric Stroke Warriors to connect other Pacific Northwest families with support and resources. She was recognized by the American Heart Association/American Stroke Association for her efforts as a Stroke Hero. The Hyatt family also took part in the AHA’s 2015 Puget Sound Heart & Stroke Walk in October.
Hyatt wants other families to be ready to recognize the signs of stroke, F.A.S.T. In other words, if you see a face drooping, arm weakness or slurred speech, it’s time to call 911. Delayed or missed diagnosis of stroke in children is common. In newborns, the first symptom of a stroke is often seizures involving only one arm or leg.
Sharing Addison’s story can also offer hope, Hyatt said.
“It sucks the air out of the room when you tell people Addison had a stroke, but what I love is that you can see that she’s okay and she’s a fighter,” she said. “It’s definitely scary, but it’s not anything to pity her over because she’s doing amazing.”
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Photos courtesy of Kaysee Hyatt