In my darkest moment -- 24 hours after my son, Luc, was born and 12 hours after he first turned blue in my arms -- I sat on a worn sofa between my husband, Mike, and the hospital chaplain. Mike was crying, the chaplain was praying, and I was feeling utterly, nauseatingly helpless.
I had never felt such shock, such numbing fear. My vision was blurred, my hearing seemed muffled, and I couldn't comprehend what was happening in the intensive care unit. Was that nurse really pumping air into Luc's lungs while his beautiful body stiffened with seizures? Did I really hear the doctor say "spinal tap," "CT scan," and "possible brain damage?" Why was my healthy son -- who was born full-term at just over 7 pounds, after an uncomplicated pregnancy -- in the same unit as fragile preemies?
After praying for an answer for three endless days and nights, we received one. Unfortunately, that answer came in the form of an MRI image. On the left half of Luc's brain scan, what looked like a large black hole seared through his otherwise healthy gray matter. Our newborn son had suffered a stroke. One-sixth of his neurons had been destroyed, and his body reacted by having seizures.
Mike and I were dumbfounded. A baby can have a stroke? One of my first thoughts was whether I caused this. But most of all I wondered what this meant for Luc.
The neurologist couldn't give us any assurances. No one could tell us what perfect storm of biological factors caused oxygen to be momentarily cut off from Luc's brain. That was just the first of many maddening unknowns.
However, this is what we do know about pediatric stroke: It occurs in the first month of life in roughly one in every 4,000 births (whether premature or full-term) and is one of the top 10 killers of children. It happens when a blood vessel that carries oxygen and nutrients to the brain either bursts or is blocked by a clot. (About 80 percent of strokes in babies are caused by a clot.) At that point, part of the brain cannot get the blood and oxygen it needs, so it starts to die.
I went numb yet again when our neurologist told us that, based on where the stroke was located, Luc could develop cerebral palsy, learning disabilities, and epilepsy. But I also remember his telling us, "A baby's brain is extremely elastic." Much of its wiring -- especially the areas involving thinking, emotions, and behavior -- is established during the first months and years after birth. This means that a newborn's brain can build new neuron connections despite stroke damage, finding alternate routes around the injury. But he needs age-appropriate rehabilitation and therapy. Doctors said that with this therapy, Luc's brain could adjust and function fine. Or not.
How do parents make future plans with a question mark as big as this? At first, we simply worried. I agonized over the past, questioning every aspect of my pregnancy even though I had no scientific proof that my actions resulted in Luc's stroke. Should I have eaten those french fries that miraculously quelled my nausea? Was it the mild depression I experienced in those early months? Did it happen because I tripped while I was jogging one day?
Mike chose to torture himself with thoughts of the future: What if Luc can't play sports with me? What if the seizures come back? What if we go broke paying for his doctor visits, leg braces, or special schools?
Quickly, though, we both grabbed onto the promise of therapy. The neurologist had mentioned that babies are born with millions of brain cells, but that thousands of those eventually die off because they're not needed. So Mike and I focused on keeping hold of every remaining cell.
We enrolled Luc in Illinois' Early Intervention program, and soon several talented therapists started coming to our house every other week for more than a year. They identified subtle weaknesses in Luc's body that I, as a new mother, might not have even noticed, and they empowered me to help him overcome them.
For example, most 3-month-olds have learned to open and close their hands. But as Luc approached 4 months, his right hand remained in a fist. His occupational therapist showed me how to rub his palm to get his hand to open, and to move toys strategically so he'd stretch his fingers for them. We placed him on an exercise ball to strengthen his core and shoulder muscles, so he would no longer lean to one side when sitting. When Luc learned to walk, his physical therapist played all kinds of jumping and kicking games to fix the slight drag in his right leg. The developmental and speech therapists kept their eyes on him, too. They visited every three months or so to see whether Luc could babble, swallow baby food, make eye contact, and show signs of separation anxiety when I left the room, among other things.
Meanwhile, I scoured the Internet for what little research there was on pediatric stroke and reached out to a statewide support group. That's when I realized we'd actually been quite lucky so far. Luc's seizures -- which, thankfully, have never returned -- were actually a blessing because they alerted us to a problem. Otherwise, we might not have realized he'd suffered a stroke until weeks or months later. The symptoms of stroke in babies are different and more subtle than in adults, and even doctors can miss the clues. One mom told us her pediatrician wasted months of precious time by dismissing her infant daughter's inability to use one hand, even though weakness on one side is a sign of stroke. As a result, the girl didn't receive therapy until she was almost 1.
Compared with those of other young stroke victims we met and read about, Luc's challenges were mild. Some children must wear braces or endure Botox injections to strengthen muscles weakened by cerebral palsy. We met preschoolers who were still learning to talk. One child had tried several medications to treat his stroke-related epilepsy, but nothing was easing his daily seizures.
We wanted to be informed about the possible outcomes of stroke, but I have to admit that hearing these stories terrified us. We skipped some support-group meetings because we couldn't handle the thought of being in the same situation as some of the other members. I stopped Googling the word "stroke," and instead read child-development books. Fortunately, as the months passed, Mike and I had more to celebrate than to fear.
By the time he was 2, Luc had "graduated" from therapy, and his neurologist could no longer find physical evidence of impairment from his stroke. From picking up a Cheerio with his fingers to speaking a full sentence and reading simple words, he has met every developmental milestone on time. We believe that having Luc in therapy at such an early age made a big difference. Does this mean that we no longer have to worry about the consequences of his stroke? Unfortunately, no. Luc's brain probably developed differently because it had to accommodate the injury, and those differences might not appear until he's older.
I've shed a few tears recently about research from the University of California, San Diego that found that 60 percent of infants and children who'd had strokes showed signs in their teen years of psychiatric disorders, particularly ADHD. The branches of my family tree are laden with anxiety and depression, and I worry that Luc's stroke will place him at further risk for such disorders.
I wish that I could be certain that Luc won't be part of any of those statistics. I like to think that the way his doctors, therapists, and family have nurtured him has permanently improved his odds. I want brilliant scientists to find the cause of infant stroke so that my grandchildren won't be at risk. I want to know in my heart what doctors keep telling me: Luc's stroke wasn't my fault.
I might never know any of this, and I still find such mysteries to be maddening. But then I look at Luc today. At 4, he imagines exploring the planet Jupiter and loves playing baseball with his dad. I dream about his future and all of the exciting opportunities that he might enjoy. Isn't that what all parents do, no matter the circumstance? Simply by bringing children into this world, we must accept that the unexpected will occur -- and dream anyway.
Who's Most Likely to Be Affected?
Stroke is a risk factor for babies with congenital heart disease, blood disorders such as sickle cell disease, and infections including meningitis and encephalitis. Premature babies, whose blood vessels are more fragile, can suffer bleeding in the brain known as hemorrhagic strokes. Stroke can also occur when mothers have a history of infertility, or preeclampsia, or antiphospholipid syndrome, an immune-system disorder that can cause recurrent miscarriage. But in 10-20 percent of cases, the cause of stroke is unknown.
What Are the Signs?
Infants might have seizures or twitches in only one arm or one leg, show a weakness on one side of the body, or have delays with their speech as well as with crawling and walking. Young children might limit their arm or leg movements or show a preference for one hand, and they might also have language delays.
What Are the Long-Term Effects?
In addition to weakness or paralysis on one side of the body, a stroke can cause a child to have trouble with swallowing or speech; he might also find it hard to control his emotions, remember things, or problem-solve. The long-term complications of a stroke might include cerebral palsy, epilepsy, and psychiatric disorders such as ADHD.
For information and inspiration about children recovering from a stroke, check out lovethatmax.blogspot.com, mom Ellen Seidman's blog about her son and being the parent of a child who has special needs.
Originally published in the September 2010 issue of Parents magazine.
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