In a Heartbeat

How quickly life changed when our daughter's heart murmur wasn't innocent at all

We had big plans last summer. Biking, swimming, and perhaps most important to our daughter, Cleome (Clay-oh-mee), her fourth birthday party only a few weeks away. She and I spent the ride to her pediatrician's office, that early June day, locked in summit negotiations about whether Little Foot or Barbie would win the coveted spot on her cake.

I wasn't concerned when the doctor heard her heart murmur again. We'd been tracking it since she was two, and it had never been a problem. But this time our pediatrician said the murmur sounded "odd." She frowned a bit as she listened and then with a shrug decided to refer us to a pediatric cardiologist "just to be safe."

"Let's rule it an innocent heart murmur once and for all," she said with a smile. "Fine," I said smiling back. I made an appointment with a cardiologist for the following week and went back to more pressing concerns like whittling Cleome's invitation list down from a medium-sized army to a small tribe.

The "heart doctor" had great toys in the waiting room and the walls were covered with cards and pictures from kids and their families. Cleome sailed through the EKG. She got to help put all the little stickers on her chest for the electrodes. She sat very still for the heart X-ray and came out of the room clutching a handful of stickers that said things like "My heart is made for love" and "Hearty har har."

I had envisioned our cardiologist as a kindly white-haired man with a twinkle in his eye and years of experience thumping kids on the chest. Sort of a Santa Claus with a stethoscope. Instead, he was in his early thirties and looked more like a graduate student than an accomplished cardiologist. He asked me a series of questions about our family's medical history: Any heart problems? No. How about the extended family? No. Had anyone in our families ever dropped dead before adulthood for any unexplained reasons? NO.

How about Cleome. Had she ever sweated while eating? Complained of fatigue? Had an erratic heartbeat? Had she ever turned blue? No, no, no, no. No to everything. She'd always been perfectly healthy and the only reason we were here was because of this heart murmur. "Great," the doctor said, as he wrote a few notes and nodded. "All her tests are fine. It's probably just an innocent heart murmur . . ."

And then he listened to her chest. And listened. And lay her down and listened. And sat her up and listened. He must have listened to her for ten minutes before turning to me with the same squint and frown as our pediatrician. "Hmmmm. There's something here. I'm not sure, it may be nothing. Let's do one more test. An echocardiogram."

I hid my concern from Cleome behind a cheerful explanation about how an echocardiogram was a special sound machine that helped doctors see and hear her heart through her skin. Cleome was unfazed by the technology. When they put The Little Mermaid video on the VCR above the exam table she climbed up eagerly and only complained when the technician's head got in the way of her view.

And that's when all our summer plans went out the window. The echocardiogram revealed that Cleome, our perfectly healthy, never-more-than-an-occasional-cold, almost-four-years-old, birthday-party-only-two-weeks-away little girl had a congenital heart defect and would need open heart surgery. "And I recommend you do it as soon as possible while she's still young," our young doctor said matter of factly.

Uh . . . excuse me? Did you say open-heart surgery? On My Daughter? I looked over at Cleome who was reading The Berenstain Bears and the Bad Dream. The irony of that didn't hit me until later. All I remember thinking was that some kid dressed up as a doctor was telling me that everything I'd believed to be true about my daughter and my life was complete fiction and we were going to have to subject our wonderful, spirited, boisterous little girl to major surgery.

As we drove home I gripped the steering wheel so hard my wrists began to ache. Cleome asked if we could stop by the video store and rent The Little Mermaid so she could see the rest of the movie. "Sure sweetie-pie," I said a little too brightly, "we can do that."

When we got home I put the movie in, turned it up really loud and called my husband, Michael. "You need to come home now," I whispered fiercely. He was confused and I knew he'd forgotten all about the doctor's appointment. It had been such an innocent blip on everyone's summer screen. I told him haltingly that we'd just gotten back from the heart doctor and the results "weren't exactly what we wanted to hear. Please, please come home now," I said shakily into the receiver. "Please come home."

That night after Cleome went to bed we kicked into crisis mode. I called everyone I could think of. I hit the Internet. I spent the weekend at the library. We became experts on the heart and all its myriad defects. The following week we got a second opinion. There was no mistake. She had an Atrioventricular Septal Defect--AVSD. A hole between the upper and lower chambers and a defective mitral valve that was letting oxygenated blood leak back into the non-oxygenated side of her heart. The defect was on the mild side but if she didn't have surgery the excess blood would begin to enlarge the heart and eventually, in late adolescence or early adulthood, she would begin to fatigue, her heartbeat would become erratic and surgery at that point would be much riskier.

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