By Vicki Louk Balint
In his first few weeks of life, Joey Whitfield of Mesa was an easygoing, happy, typical baby. But at around 8 weeks, his mother, Chandra, began noticing a few things about Joey, now 18 months old, that seemed different from her experience with her firstborn, Daniel, now 4. He couldn’t turn his head to the left very well and he didn’t seem to be gaining control of his head and neck.
“I knew something was off,” Whitfield says. “I didn’t know what, but I knew it was something.”
She mentioned her concerns to Joey’s pediatrician at the next well-baby checkup. The doctor diagnosed Joey with torticollis, a condition that can occur when neck muscles, nerves or blood vessels are injured in the womb. He prescribed some stretching exercises and suggested that Whitfield put toys on Joey’s left side to encourage him to turn his head.
The exercises helped, but soon Whitfield began to notice that Joey wasn’t using both hands to reach for toys or other objects—just his right hand. When Joey’s 6-month checkup arrived, she again voiced her concerns to the pediatrician, who agreed something was wrong.
“He said, ‘Yeah, I’m seeing it now, too. Let’s go ahead and send him to the pediatric neurologist,’” Whitfield remembers. “We went there and she immediately said that she believed he’d had a stroke.”
A stroke occurs during an interruption of blood flow to any part of the brain, resulting in tissue injury and loss of brain function. Experts estimate that stroke occurs in one out of every 4,000 births.
“Being born is one of the most dangerous times of your life,” says Jeremy Timothy, M.D., “and it’s a stressful time for a baby. When you’re elderly, or when you’re very young—that’s when you’re the most vulnerable.”
Stroke can be related to inflammation in the placenta that causes clots to go to the brain, says Timothy, a pediatric neurologist at Cardon Children’s Medical Center in Mesa. Or it might be that the baby or mother has a tendency to make clots because of certain medical conditions. Dehydration, infection, congenital heart disease or trauma can lead to an increase in clots that go to the brain.
Seizures, especially in the first days of life, are among the first signs that a baby has suffered a stroke. A preference for left-handedness or right-handedness before a child’s first birthday is always abnormal, says Timothy, and usually indicates a weakness on one side.
Some degree of developmental delay will be present in about 50 percent of babies who have strokes. Cerebral palsy, a disorder that affects movement, may affect the weak side, and can impact young stroke victims for life. “A fair percentage have significant problems,” says Timothy, but with other kids the symptoms of stroke may only surface incidentally in a future, unrelated CT scan.
The cause of infant stroke is often never known. “It’s always a shock to parents and they immediately want to know why,” adds Timothy. “That’s a hard question to answer.”
But now for the good news: if you’re going to have a stroke at any point in your life, that’s the time to have it.
“The younger you are, the more you can rewire your brain around damage,” Timothy says. “The brain is still plastic.” Where a stroke would paralyze an adult, a child may only show a little bit of weakness. The sooner that you catch that weakness, the sooner physical, occupational and speech therapy can begin.
Right around the time he turned 8 months old, Joey was diagnosed with left-sided hemiparesis (weakness on the left side of the body) due to a stroke in-utero. An MRI confirmed the diagnosis. He began regular therapy to help strengthen his left side.
The testing and therapy will continue. So will Whitfield’s determination to raise awareness and grow a community of support.
What has helped her the most are connections with other parents of children who have suffered stroke in utero through local support groups, particularly through the Children’s Hemiplegic and Stroke Association. The value of parent-to-parent connectivity through online chat groups and message boards cannot be underestimated as families navigate the “wait and see” world of wondering just how a stroke event will affect a child’s future, says Julie Ring, CHASA board member.
These days, Joey can walk like a pro and say a few simple words; his speech therapist is teaching him sign language to further enhance his communication skills. He began treatment with medication for a partial seizure disorder and was set to undergo further analysis at the Pediatric Epilepsy Monitoring Unit at Phoenix Children’s Hospital this fall.
No matter what struggles are down the road, Chandra says she knows her son will overcome them. He has more determination than she’s ever seen.
“Joey is a happy, smiley, loving, funny, and crazy little boy who will not let anything slow him down,” she says. “Each new thing he does is so exciting and continues to give me hope. It’s amazing that such a little person can do such a big thing.”
For more information on Chandra’s quest, or to order a Childhood Stroke Awareness bracelet, write to firstname.lastname@example.org.