My daughter was born with a hole in her heart. It's a sentence that reads like poetry but is purely medical. This hole created an unwanted door between her left and right atria, those upper rooms of the heart, letting oxygenated and deoxygenated blood mix. When she was a baby, the cardiologist said the hole had three potential destinies: become larger, stay the same, or shrink to nothing. We were told to wait a few years and let her grow.
The prescription was patience.
A few years later, a different cardiologist reported the good news. The hole in her heart had virtually disappeared. We didn't open Champagne bottles in the hospital room, but it felt like the emotional equivalent. The doctor's face was alight. Someone might have said "hooray!" That someone might have been me. My kid would not need heart surgery. It was like crossing a massive item off your life's to-do list.
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My daughter has a rare chromosomal condition called Wolf-Hirschhorn syndrome, so my husband and I have plenty on our to-do list. Occupational therapy, physical therapy, and scoliosis monitoring, to name a few. "Her heart is good," I always told medical professionals when they asked about health concerns.
And her heart is good. No longer a baby, she's a 50-pound preteen who digs fanny packs and Taylor Swift. She is a joyful, enthusiastic, willowy kid with bright blue eyes and grinning lips so coral that people think she wears lipstick. She has developmental disabilities. She also has a fondness for dance music, long walks, and talking nonstop about plans for tomorrow. When I say her heart is good, I'm speaking not medically but metaphorically.
But when I told doctors her heart is good, I meant medically, too. I said the same this fall when I took her into Philadelphia on a dark Saturday morning before dawn cracked. She needed a sedated MRI for her scoliosis. The children's hospital was a virtual ghost town. I'd woken us both up before 6 a.m., kept her from eating food, navigated city highways and construction in the dark, circled a parking garage for eons, wandered the hospital's maze of hallways, and arrived at the right place on time. I did all this while carrying my massive anxiety like a kettlebell. I was about to hand my daughter over to doctors, let them put her under.
This is always the work of parenting, of life, at least at some point: We have to cede control. Once the anesthesiologist came to meet us, she wore a permanently furrowed brow. She asked a series of questions. Had my daughter ever been sedated before? (Yes.) Had we been to cardiology recently? (No.) "Her heart is good," I said.
"I'm not going to do the sedation today," the anesthesiologist eventually said.
I swallowed my incredulity and asked why. We'd have to go through all this trouble again: the fasting, the dark drive, the parking garage, the anxiety.
"She's medically complex. Our Saturday staff is too skeletal for her." And then the doctor said the kind of bone-chilling sentence you don't want to hear in a hospital: "If something happens to her, I don't have the staff to bring her back."
Bring her back. If something happens. It was a reminder that my kettlebell of anxiety was right-sized, that anesthesia always poses risks.
The anesthesiologist advised us to schedule another MRI, but this time on a weekday, when the hospital was bustling. "And while you're at it, get her heart checked again."
So I brought her back to cardiology. An ultrasound tech squeezed goo on her chest and snooped her heart's chambers with a wand. We listened to TayTay sing about Romeo and Juliet, another story of hearts. I yawned and assumed all was fine.
"She has a moderate-sized hole," the doctor said when she entered the examining room.
I was caught off guard. Had it been there all along? Had it shrunk, then grown again? The doctor didn't know. But it was time to close the hole.
What do you do with surprising medical news? You gather info and trust the experts, even if one of those experts admitted that they might not be able to prevent the worst. Luckily, my daughter's hole was in the right place to be repaired the easy way. She wouldn't need open-heart surgery.
She could have a catheter procedure. But she'd still need anesthesia. When we met the doctor, a different cardiologist who would repair my daughter's heart, I asked, "How many stitches will she have?"
She shook her head. "There's no incision. It's actually a large IV." The doctor would use my kid's vein as a pathway to her heart. It sounded like magic. Without cutting a single stitch, they'd fix the hole.
And what would they use to patch the hole? I asked.
The doctor dug her hand into her white coat pocket. She pulled out a sample device. It looked like a white flower with eight teardrop-shaped petals. The petals were etched in titanium and overlapping like a pansy. When pinched at the center on both sides and pulled apart, the contraption grew in length but shrank in diameter, so it could traverse her vein. I marveled at its beauty. If a hole in a person's heart is purely medical, the medical world's answer to that hole is pure poetry.
My husband and I placed it in her thin hand. We all looked down on it. In 24 hours, a sterile version of this polymer flower would become a part of her heart forever.
But we still had to sign documents acknowledging the risks of anesthesia. As the procedure loomed, I kept hearing the previous anesthesiologist's words. If anything happens….
The morning of, my husband and I waited with her in her room. Another child had a procedure before hers. We waited and waited some more. We watched a movie. We grew hungry but fasted in solidarity with our kid.
Thirty minutes before the procedure, a nurse administered some anti-anxiety medication so our daughter would fall asleep. She grew giggly, then groggy. Her eyes closed. But then, she got anxious. She started thrashing, sweating. She sat up and threw herself back down on the bed. Her heart rate skyrocketed. I called a nurse.
"It's a paradoxical drug reaction," the nurse explained.
I cradled my girl. I whispered in her ear all the people who loved her. She eventually passed out in my arms. I held her, undisturbed, my arm cramping. I leaned my head against the pillow in relief.
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A few minutes later, five women in white coats came around the bed. We'd dimmed the lights, and their coats glowed a little, so their presence bore an uncanny resemblance to angels.
"We are anesthesia" the oldest one said, her hair short and white. Pearls popped from beneath her collar.
I rolled out of the bed. They wheeled my daughter out of the room. My husband and I walked behind her. People do it every day, walk their beloveds to a surgery or sedated procedure, but that didn't make it easier.
She remained sleeping, and the oldest anesthesiologist walked right beside my right shoulder, close as a prom date.
We got to the wide doors that my husband and I couldn't enter. This is the work of every parent, eventually: to let go. I had to trust that the team could take her deep, repair her heart, and bring her back.
And they did. Three hours later, they rolled her back to us. Snoozing deeply. Breathing soundly.
"She stayed asleep the whole time," the anesthesiologist said. Her heart was changed. And so was mine.
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