Tuesday, March 5, 2019

Luke Perry didn't survive his stroke. Our baby got lucky.

I felt sad yesterday when I read that Luke Perry died of a stroke. Like a kajillion girls, I'd had a crush on him in his Beverly Hills, 90210 days. He was young, just 52 years old. His passing was a sobering reminder of how dangerous strokes can be, and the tragedy Max escaped.

Luke had been rushed to the hospital last Wednesday. Reports say he was responsive when EMTs arrived. Doctors sedated him, hoping to give his brain a chance to recover from the trauma, but the damage was too great.

Until we had Max, Dave and I had thought that only adults had strokes. That changed the day we sat down in an NICU conference room with a team of doctors after Max was born. Max had stopped breathing a couple of times, and then doctors realized he was having seizures. 

"Your baby has had a stroke," the pediatric neurologist told us. It was a large stroke that had affected both sides of Max's brain, the left side more significantly. The doctor was grim: Max might not walk or talk, and he could have severe cognitive issues. His hearing and sight might be affected, too, we learned. The next day, a kind resident talked with Dave and me about the ability of the brain to heal and reorganize itself—its plasticity. He showed us the MRI film and we could see the white spots, where the brain damage was. 

We certainly didn't feel lucky, but we were. The stroke had spared Max's brain stem, responsible for basic functions like breathing and swallowing. It had spared his life. Eventually we'd come to learn that, if this had to happen, we were also lucky that Max's stroke had been detected right from the start. Sometimes, parents only realize that their babies have had strokes when they have delays.
We got Max going on physical therapy as soon as he was home from the hospital. Occupational and speech therapy would follow, along with alternative treatments like hyperbaric oxygen therapy and, when he was six, stem cell therapy. We used the stem cells we'd banked at Max's birth, before we knew what had happened to him.

As lonely as I felt at the time—this was 16 years ago, before blogs and social media—pediatric stroke is not uncommon. It occurs in about 1 in 4000 live births, reports the National Stroke Association, with the greatest risk right before and after birth and during the first year of life. Causes include heart defects, blood clots and pregnancy issues like premature rupture of the membrane or pregnancy-related high blood pressure. Sometimes, doctors are not sure what went wrong, which was the case with Max.  

It was hard not to blame myself. Was it that time I spray-painted the medicine chest? I kept wondering, and maybe always will. Whenever I heard of an adult who'd had a stroke, whether someone I knew or someone famous, I would struggle to wrap my head around the fact that our baby had a stroke. When I'd read about adults struggling to regain skills like walking or talking, I'd despair about having a little guy who was struggling to learn to walk and talk and who had difficulties holding things in his stiff hands and even chewing as a result of a stroke. How did this happen? Why? What did the future hold for our beautiful boy?

Max has shown us the potential of the brain to heal. His speech isn't so clear but he has speech. His hands don't always move the way he'd like them to because his brain doesn't send the right signals, like a GPS on the blink, but he gets things done. He walks really well. He has cerebral palsy, but it does not have him. This boy has defied expectations. These are things I note when I'm talking with someone whose relative had a stroke, offering them hope that we were not given on that fateful day in the NICU.

Stroke can happen at any age—babies, children, teens, adults of all ages. I do my best to spread the word about the signs of pediatric stroke (which can be confirmed with ultrasounds and MRI):

• Seizures are the most common sign—parents may notice rhythmic twitching of the face, arm or leg, or pauses in breathing and staring.
• Delays in early milestones like rolling, sitting, pulling to stand, crawling and walking.
• A child who favors one hand over the other before 18 months old, with the other hand clenched, or who doesn't bring both hands together during play.
• A child who is unwilling to bear weight on one leg, points the toes on that foot or walks on tip-toe.

Luke Perry's stroke was so massive, he couldn't survive it. R.I.P., Dylan—you're forever in our hearts. And Max, well, I will forever know how darn lucky we are.

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