It happened to us
A few years ago, on what now seems like a different planet, I was a newspaper reporter writing about child and family issues. I had no children, an irony lost on me until April 18, 2006. That’s when I gave birth to my son, Luc.
Back on Planet NoChild, whenever I covered a childhood problem or illness, I tried my best to capture the reader with the most heart-wrenching details I could find.
If it was National (fill in the disease) Month, I found the most tragic story possible.
And then, I got pregnant.
Now I’m not only a mother, I’m one of those people with an alarming story to tell. I finally understand why those parents allowed me to share their most painful details with readers: they wanted people to understand, be more aware and perhaps even prevent another child from enduring what theirs did.
Which is why I want to tell you that May is National Stroke Awareness Month. I want to talk about Luc, who suffered a stroke probably even before he was born. Didn’t know babies or children had strokes? Neither did I until my beautiful newborn bundle turned blue in my arms.
Twelve hours after Luc was born, he suffered his first seizure. After being rushed to the hospital’s neonatal intensive care unit, Luc endured about a dozen more seizures. I’ll never forget watching an amazingly calm nurse squeeze bagged air into my little boy’s lungs to resuscitate him.
Doctors filled him with anti-seizure medications and antibiotics in case he had an infection. They did a spinal tap and a CT scan. Finally, four days after delivery, a neurologist showed us the black and white MRI image of Luc’s brain.
On the left side, near the middle, where there should have been gray matter, we stared at a black hole. Some sort of clot had traveled up an artery and snuck into my child’s brain, blocking blood flow and killing some of his brand new, precious brain cells.
Turns out, the general public isn’t the only group unaware that babies and children are at risk for stroke; many medical professionals don’t know either. That’s why people like Dr. Mark Wainwright, a pediatric neurologist at Northwestern University Feinberg School of Medicine, are trying to spread the word.
Stroke in children is unusual. Wainwright says about six out of every 100,000 little ones have a stroke. That number is actually a bit higher in fetuses and newborns and is much more difficult to find a cause.
Sometimes babies have congenital heart disease or a blood disorder that can result in stroke. The phospholipid antibody syndrome, which can cause recurrent miscarriage, can also sometimes result in stroke.
Newborns have a relatively low level of certain proteins that regulate blood clotting and sometimes this is enough to cause a stroke. Perhaps some babies simply have a genetic predisposition to developing clots that end in stroke.
The cause of Luc’s stroke, as with about half of babies who have a stroke before or just after birth, remains a mystery—some perfect storm of factors that produce a life-altering clot.
While I don’t naturally take solace in such unknowns, I have had to learn to embrace them for their possibilities, at least when it comes to Luc’s ability to recover.
In those first days after delivery, my husband and I grabbed any doctor we could find, pressing them for details about Luc’s future. Would he have cerebral palsy so severe he would never walk? Or would his arm and leg simply need a brace? Will he have trouble talking, learning his alphabet or adding 2 plus 2?
At the time, we were furious that no one would predict Luc’s outcome, but now we understand: They truly didn’t know how his brain would adapt.
Some of the brain cells in a newborn baby are already connected and functioning, such as those that regulate basic functions like heartbeat. But much of the brain’s "wiring"—which forms thinking, emotions and behavior—is created during the first months or years after birth. This means a newborn’s brain could develop neuron connections despite stroke damage, finding alternate routes around the injury.
We wanted as many of Luc’s brain cells wired up as possible, so we signed him up for therapy when he was 10 weeks old. Child and Family Connections, a regional partner in Illinois’ Early Intervention service, sent both a physical and occupational therapist to our home once a week.
Signs to watch
We were unusually lucky to start so early. Without those initial seizures, we never would have caught subtle signs of Luc’s stroke, like how he leaned to the right when doing tummy time or how his right toe dragged a bit when he was learning to walk.
"Even to the trained eye, the signs (of stroke) can be hard to recognize," Wainwright says. "A common scenario is that children begin to show a hand preference—say by the age of 1 or 2—long before it would normally be expected."
But sometimes even hand preference isn’t enough of a red flag for doctors. Sarah Exley says her daughter rolled over, sat up and met other early milestones right on time. But, ever since she was a newborn, Avery kept her right hand in a fist, close to her body.
When Exley pointed this out to Avery’s pediatrician at the 3-month check-up, Exley says it was dismissed. The pediatrician still didn’t seem concerned at Avery’s 6-month appointment.
"I said, ‘She’s not using her hand, she doesn’t want to move it.’ " Exley remembers. "He said, ‘I just think she’s a lefty.’ Deep in your heart, you know something’s wrong, but then the doctor says it’s nothing."
Exley, who is part of the Childhood Stroke & Hemiplegia Connections of Illinois, trusted her gut instincts and contacted a different pediatrician. Avery was diagnosed with a stroke when she was 9 months old. About four-fifths of the left side of her brain had been injured.
Now that Avery is in therapy, Exley says, she is progressing well. Avery skipped crawling because walking required less use of her hand, but now at almost 2, she can crawl. She knows lots of words—she can point to colors or shapes, for example—but she hasn’t been able to speak yet.
What caused Avery’s stroke to impact so much of her left hemisphere, while Luc’s damage included just one-sixth of his left side? This is another mystery I must learn to accept. Luc has been able to replace any initial weakness with balance and strength each time he learns a new skill. His neurologist recently said she could find no physical evidence of stroke at all.
I recently shared this good news with Mary Kay Ballasiotes, a powerhouse of a mom who formed the Connections group six years ago after her daughter suffered a prenatal stroke.
Ballasiotes congratulated me on Luc’s progress, but gently reminded me that our journey is far from over. "…We have all been where you are," she told me via e-mail. "Then school starts, growth spurts happen…"
What? More unknowns?
Wainwright says yes, even children who received therapy soon after a stroke face other challenges later. He says that accommodating the stroke injury must cause their brains to develop differently.
A long-term study in Canada reports parents observe problems with behavior, learning and even sleep as their children reach school-age.
This kind of information makes me think back, on Planet NoChild, when I marveled at the super-human strength parents displayed in the face of such unknowns. Now I see they were just coping the best way they knew: by focusing on the positives and by educating others about the negatives.
So, now I’ve talked about the negatives of pediatric stroke and the subtle signs to look for in the babies and children you love. I’ll end by focusing on the positive: Luc today. He’s a running, dancing, finger-painting toddler who can pull off his socks faster than I can put them on, who talks incessantly about the construction trucks he sees rumbling down our street and who can say "I love Mamma" clear as a bell.
Lisa Applegate is a first-time mom and freelance writer living in Chicago.