My Botox Baby
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Rather than locomote on his own, Jack spent most of his time in an exersaucer grabbing at toys within easy reach. At the park, other kids ran around while my son sat watching them.
I felt like I'd been sucker punched. I'd always prided myself on not buying into the my-baby-can-do-this, one-upsmomship game. Up until his one-year well visit, everything had been great. Sure the bottle-holding battles and his inability to ambulate around the house gave me pause, but when I read up on developmental stages, they didn't seem to be out of the realm of normal.
All new moms deal with their kids' quirks, don't they?
The doctor suggested that we have Jack evaluated by therapists at early intervention. My immediate thought was, "Early intervention? Isn't that for drug addicts, alcoholics and gamblers?" But before I had the chance to say as much, she went on to explain that she was concerned he wasn't hitting his milestones.
My husband Tom and I left the office in a mutual haze, and decided that the doctor was being an alarmist. I put off calling the early-intervention specialists for another month. Jack, I figured, was just slower to hit milestones because he was born three weeks premature. And besides, it was his personality to do things on his own schedule. According to my mother-in-law, if he were anything like his father, he'd be hitting milestones when he was good and ready.
Stubborn and self-directed, she said.
Independent and laid-back, we thought. We were impressed with our son. What a cool dude he was.
But, deep down, something was nagging at me.
When I finally called EI, I had an appointment with an intake coordinator and three therapists all on the same day. They observed him en masse on a play mat at their facility, interacting with him at various intervals, offering him toys and books.
The speech therapist remarked that his language abilities were age-appropriate. The physical and occupational therapists, however, recommended that he receive some therapy, explaining that he was exhibiting low-muscle tone on his entire left side, which was the reason he was unable to crawl, pull himself up or hold his bottle.
Of course, in hindsight, I started to pick up on clues. Whenever I'd place an object to his left, he'd reach across his body with his right hand to grab it. I never thought much of it at the time other than that he was probably not going to be a lefty like his father.
They told me he was at least 30 percent delayed in both his fine- and gross-motor skills, which qualified him for state-funded, early-intervention therapies. The physical therapist then recommended I make an appointment with a pediatric neurologist.
"Why?" I asked, a little surprised. "Why would he need to see a neurologist?"
"Well, there's a chance he had a stroke," the PT said.
"What? What are you talking about? When could he have had a stroke?"
"I really don't know," she responded. "I just think it's a good idea to meet with a neurologist to rule anything out."
Our meeting with the pediatric neurologist was far from definitive. After examining Jack for 10 minutes, the doctor said that she believed he probably did have a stroke. She didn't have an answer for us on when and how this could have happened, but she wrote a prescription for an MRI.
Because he was so young, they put him under general anesthesia in order to perform the MRI, which took about an hour. I had a full 60 minutes to rehash the past 14 months, like how I'd joked to my friends that when Jack attempted to crawl he looked like a slug. I'd even get down on my belly on the floor (at work, in their living rooms) and show them. His right arm would be stretched out in front of him and he'd drag the rest of his body behind him. His left arm would be tucked close to his side, really just along for the ride. He looked like one of those man-crawling-through-desert-in-search-of-water cartoons. I thought it was kind of cute.
Making fun. That's how I deal with trauma and pain. I make light of it. It's a coping mechanism that has always worked for me. But underneath all the humor was now a lot of pain. And even more guilt.
A week later the neurologist shared the results with us. The scans confirmed her suspicion. Jack had indeed suffered a stroke that left permanent damage to his brain.
Again, I asked, "When?"
"It's what we call an in-utero stroke. It happened while you were pregnant. The best we can do is pinpoint it to some time during your third trimester or during delivery."
I was stunned. How the hell did this happen? All this time he's had this brain injury and neither of us knew. An unending litany of questions began to fill my head. "How could we not have known? How did we not notice? What caused it? Was it when I passed out in the subway? Nope, that was during my first trimester. Was it when I fell down that steep flight of stairs in the pouring rain? No, that was during my second trimester. Was it because I don't eat red meat?"
I bombarded the doctor with every plausible reason I could think of.
"Julie," she said. "We don't know what caused it. It certainly wasn't anything you did or didn't do. This is one of those medical mysteries that we don't have an answer for. It was a fluke accident and you need to continue the therapy you've started and work with him as much as you can. His brain is very plastic. His neural pathways are constantly realigning themselves. There's lots of good work you can do right now."
Turns out, even though my husband nor I, nor any of our friends or family, had ever heard of an in-utero stroke, they're not so uncommon. They've actually been documented as one in every 4,000 full-term births. Not so much a fluke, in my opinion.
What I couldn't get past was the fact that we were completely oblivious to his injury for more than a year, or more precisely, his entire life.
Early on in our nascent parenthood, my husband and I made a conscious decision to let one parent lose his or her mind at any given time. But when this happens, the other parent must assume the role of calm, even-keeled caregiver, regardless of his or her real emotion. We found that it mostly worked like a charm. We were respectful of each other's space and didn't try to usurp one another or encroach on the other's moment of un-zen-like behavior.
That is, until the morning we found out our son had suffered permanent brain damage, with lesions on his right, front and parietal lobes that will never go away. On that day, we both lost it.
The stroke he had was called an infarct. It occurred in the right frontal lobe, which essentially affects his motor skills on his left side. The neurologist told us he's also at risk for epilepsy.
"How 'at risk'?" I asked.
"There's a 50/50 chance he'll be diagnosed with epilepsy in his lifetime," she said.
In other words, we have no idea.
We went home that night in a state of disbelief and shock. In an effort to make the best of it, I started Googling famous people with epilepsy and names from Fyodor Dostoyevsky to the Beastie Boys' Adam Horovitz popped up. I thought it would make me feel better but it only made me feel worse. I started to cry and continued to weep for a long while. My husband took me in his arms and we cried together. We had no idea about our son's future, let alone his present.
The early-intervention program turned out to be our saving grace. His official diagnosis was hemiplegia, which is a mild form of cerebral palsy, and includes paralysis on one side of the body. Within a few months he was able to hold objects with his left hand and eventually move in a way that resembled a crawl. The mechanics of walking, however, seemed elusive.
Heidi, Jack's physical therapist, is one of those people who goes above and beyond and then beyond that even more. She was so invested in his success that she called us up at night and on weekends to discuss new ideas and therapies. Full of creativity, insight and compassion, she kept me sane and hopeful throughout this ordeal.
One day, she said she'd been talking to another therapist who was having some success with this wearable equipment called TheraTogs. She wanted to try it on Jack. It was essentially pieces of felt that would wrap tightly around his waist, pelvis and left thigh to help stabilize his muscles. In the beginning, like everything we did with him, he resisted, and this get-up was no exception. And it really was a get-up. Whenever it was on, I couldn't help but think he looked just like a Jedi Knight.
A few months after his diagnosis, my parents babysat Jack for an entire weekend. When we returned my dad asked if we ever noticed that Jack's left leg was shorter than his right.
"No," I said. "Never. Show me."
So he lay Jack down on the sofa and pulled his two legs down straight in front of him and gripped them at his ankles.
"See," he said.
"No. I don't see," I said.
Tom looked and said, "Yeah, you're right. I do see that. "
"Maybe you should go see a pediatric orthopedist," my father offered.
All I could think was, "Here we go again. Another missed observation by Mom and Dad." Once again, the guilt settled in.
So the next day I made an appointment with a pediatric orthopedist, who performed the exact same test with Jack's legs that my father did and said, "Yes, the right one's a fraction longer. But that's not what's inhibiting his ability to walk. He has hip dysplasia."
She explained that his left hip socket was turned out about 20 degrees and that he probably wouldn't be able to walk until that was corrected.
"Was he born with this?," I asked.
"Most likely it's a result of him overcompensating for his left leg with his right one. This has caused his left hip to splay out in the opposite direction. We just need to correct that," she explained. "There are two options: The first is to snip the tendon in his adductor, the inner thigh muscle. That would put him in a half-body cast for three weeks."
"The second option is to give him Botox."
"You're kidding," I said.
"Dead serious," she replied.
What mother in her right mind would let a doctor stick a botulism-filled syringe into her child's sweet, fleshy thigh?
She explained that his adductor has continual spasms, which was impeding his ability to walk. The Botox would temporarily stop the spasms and enable his physical therapist to get in there and do intense stretching, which in turn would help return his hip to its normal position.
That night I decided to do my own research. Turns out that Botox is a common treatment for people with cerebral palsy, and it has helped many people get past the muscle spasms and allow their bodies to function better. Even more surprising, Botox was invented to help people with crossed eyes and uncontrollable blinking. When doctors noticed the lines around these patients' eyes were softening and even fading, a booming cosmetic industry was born.
Still, it made me nervous, but if it is was going to help my son learn to walk, then I needed to get over it. My friends didn't believe me when I told them my son was getting Botox. A cheeky coworker asked me to save any extra for her. In my compensatory way, I joked he'd go in a two-year-old and come out a one-year old.
My husband is analytical by nature and was much quicker to consent to the treatment than I was. We both agreed that nothing in our lives had prepared us for this and that parenting is like a series of curveballs thrown to make sure you're paying attention.
And yet another was on the way.
We were warned of the perils of trying to get our health insurance to pay for Botox. The doctor would write us a prescription and we would have to go to the pharmacy, pick it up ourselves and bring it back to the office.
Standing at the counter of my local drug store, the Botox-bearing pharmacist said, "That comes to $780."
"That's the co-pay?," I asked incredulously.
"No," she said. "That's the full amount. Your health company is denying coverage."
"Hold on," I said and stepped away from the line. I pulled out my cellphone and called Tom, knowing full well that he would take care of it. He's a bulldog when he needs to be, one of the more charming things I learned during our courtship.
Tom called back five minutes later and said, "Go try again. It should work now." Of course, Botox is not covered for wrinkle removal, but my husband set the record straight with the insurance company, firmly explaining my son's need.
"Let me get your name so when I write my complaint letter that you denied treatment to a little boy who had a stroke, we have all our facts straight," he said.
Five minutes later, we had our Botox, for the grand total co-pay of $70.
Weeks into the treatment, we saw gradual improvement, but nothing earth shattering. Then one night, my son's babysitter told my husband and I that she wanted to show us something, quickly adding, "Oh, and get your camera."
She put Jack's favorite toy on the chair across the room. Then, she stood him up on his feet and pointed to the toy. It worked like catnip. He took off like a bat out of hell. Not the most graceful perambulation, but it was all his. Every. Awkward. Step.
We clapped and hooted and shouted with a joy that could not be matched. Then we called my parents and put the phone on speaker. They heard us celebrating, but wanted to see for themselves.
We uploaded to YouTube within minutes so family and friends could share in this big moment.
In addition to the Botox injection, Jack's orthopedist also prescribed an immobilizing brace for nighttime, a kind of outsize molded-plastic wishbone that splayed his legs so wide I feared he would split in half.
Anticipating his distaste, Tom and I cobbled together a mini brace comprised of duct tape and a milk jug for Jack's mini Elmo. That night we showed him Elmo's new "toy."
"It's only for nighttime, when he's sleeping," I said.
"Here, let's put it on him," Tom said.
A huge smile spread across Jack's face as he took the odd plastic object and wrapped it around Elmo. He was very pleased with himself. Then we told him it was his turn. That's when he started to cry. Big, loud, hiccoughing tears.
Eventually we wrestled him into the contraption and put him to bed, with him crying all the way. I did, too. It really tore at my insides to see him like that but I knew he needed to wear it: To walk, to run, to skip and jump, like the other kids.
A few days later Tom came home with an Elmo as big as Jack. That night we put Jack's brace on Elmo; Jack pulled it off. Then he lay the brace on the bed and climbed into it. We knew he was set to be strapped in when he popped his thumb into his mouth and lay still.
Four months from the date of his first Botox injection we had a follow-up appointment with his orthopedist. She was so pleased with his response that she informed us Jack didn't need more Botox and that he could stop wearing the brace.
That was three years ago and today Jack is a happy, active five-year-old who runs around the playground with other kids his age. He holds his own in the sandbox and climbs up and down stairs like a champ.
But in quieter moments, I feel like I'm waiting for the next curveball to whack me upside the head. Because of his stroke, there are many unknowns that will only present themselves to us as Jack goes along living his life, the same way we found out about his stroke in the first place.
I think about what we've all been through, and how I was freaked out about the idea of Botox for a baby. Now, I can't deny the reality. Botox has given me a permanent smile.
Related: Botox for stroke survivors