Trigger warnings: children’s medical complications, PTSD
His name says it all.
He runs. He tackles. He dances to every beat he hears. When someone says, “Yucky,” he closes one eye, grimaces, and shakes his head side to side. Fearless Toddler is many things. But none of them were anticipated.
He rocked and rolled right into the world. After 2 1/2 hours of labor and pushing, we were holding the baby boy who we’d thought was going to be a girl. When the midwife pulled my baby up out of the water, one of the first things I saw was the lump on his right thigh.
“Why does he have a third knee?” I asked her.
“That’s not a knee,” she said, “Don’t worry about that now, we’ll figure it out. Just enjoy your baby.”
It turned out to be a soft tissue tumor classified as a cavernous hemangioma–a variation on the strawberry mark DoulaBoy had on his belly as an infant. But this was a birthmark in a growth the size and shape of a bent knee. It filtered the platelets out of his blood for his first week of life, leading to daily blood draws and–had we not been experienced parents with a pediatrician who’d cared for each of our kids from their birth for eight years straight–the ever-looming threat of hospitalization.
“How will I know if he’s hemorrhaging internally?” I asked his doctor the first day, as if I were asking what kind of diaper cream to use.
“He’ll have thousands of tiny red or purple pinpricks in his skin,” she answered with equal calmness. “It’s called petichia; you see that, you take him to the ER, no delay.”
Our midwife saw us every day. The pede saw us every day. The pediatric dermatologist they referred us to saw us every day. I had all of their cell phone numbers in my contacts list. And still, he was just my baby.
He learned to nurse. He smiled. He turned over.
He had ultrasounds. He had X-rays. He had CAT scans. He would have to have a biopsy. “It’s not cancer,” I said confidently.
“It could be cancer,” the doctors told me. They did more tests. “It’s probably not cancer, but it could be a vascular syndrome that could cause him to bleed out internally with no warning.”
“It’ll be okay,” I told BirthLifeHusband. “We’ll have a plan. We’ll put it in writing and every adult who ever supervises him will have a copy. We’ll never go on vacation more than 15 minutes from a Level One trauma center.” It was ridiculous; how could we live our lives that way? But that was the plan.
“Don’t worry,” the pediatrician said when I told her this possible diagnosis. She looked it up in a top-secret, doctors-only research database. “Only 92 people out of 8 billion on the planet have ever been diagnosed with it.” But she helped me make a plan, just in case.
When he was five months old, he started crawling. We fenced off the Legos so he wouldn’t get one and choke on it. He got them anyway. He never choked.
“It’s growing,” said the pediatric dermatologist at his six-month visit. “He needs surgery.” She set up an appointment with a soft tumor surgeon younger than I was. He was handsome and stylish. He examined FearlessBaby’s bump, looked at him, tickled him. “What a happy baby. He makes you want to have more kids.”
We waited for less than an hour while our baby was in the OR, clutching each other’s hands till Younger-than-Me Surgeon appeared. “It went fine,” he said. “Totally benign, but it was growing into the muscles of his thigh. Would’ve siphoned off the blood supply and then he’d have been in real trouble.”
That night, with twelve stitches running across his knee and up the inside of his thigh, our FearlessBaby jumped non-stop in his hospital crib and tried to crawl down the hall to the play room. “How will we keep him off it?” we asked the nurses. They shrugged. “Keep him still as much as you can.”
Four days later, he popped three stitches. We were at a doula friend’s home when the blood started trickling, then soaked through 16 layers of gauze in ten seconds. “Why don’t we just take him on over to the pediatric ER?” my friend said calmly. “I’ll drive, you carry him.”
“But his car seat,” I said, numb, watching blood flood down his leg and soak through my jeans.
She was gentle. “If we get stopped the cop won’t be worried about a car seat.”
At the ER, residents texted photos to his surgeon, who was (naturally) operating. On his instruction, they replaced the stitches and wrapped his wound tightly. At home, I had a panic attack trying to change his diaper. BLH put his hands on my shoulders and helped me breathe myself calm again, as he had done when I was in labor. Then he changed FearlessBaby while I called my midwife.
“I think I have PTSD,” I told her.
“Of course you do, that’s totally normal after what you’ve been through,” she said.
When I told this story to the pediatric dermatologist, she said, “I understand, but you need to be aware that the tumor could come back.”
Fearless Toddler turned three two weeks ago. He is a blond ball of energy. He doesn’t walk anywhere, he runs or jumps like a kangaroo. Left to his own devices, he finds anything that can be used as a musical instrument and plays and sings and dances himself into exhaustion. He has the sweetest smile, until someone treats him (in his eyes) unfairly; then his immediate response, picked up from his big brothers and many an afternoon on the elementary school playground, is, “I gonna kick you in the butt!”
His tumor has not come back.
“I’m watching for his name to come up on the registration list,” NinjaBoy’s kindergarten teacher recently told me, “and when I see it I’m going to snap him up!”
“Just be aware, of all my kids, this is the one that NEVER. STOPS,” I answered.
No matter what.
He is Fearless.