American Heart Month Leaves Out Caregivers

Some things can’t be kept at bay with meditation and good sleep habits. Some heart months last for years.

It comes every winter in a flurry of hearts, red ribbons, exclamation points, and drags behind it a trail of admonishments about vegetables and brisk walks. There are national retailers selling shirts with catchy slogans and inevitable morning talk-show demonstrations of ways to lower cholesterol. It’s American Heart Month, and it drags me back into the ugliest corners of my memory every year.

It isn’t my heart that I find back there, under boxes of medication and deflated mylar balloons. It isn’t either of my parents’ hearts. When I see the flashy red banners and the suggestions to “Know Your Risk!” what comes to mind is something I haven’t actually seen myself, but can’t stop imagining: my daughter, face-down on an operating table, a clamp holding open the five-inch-long incision between her ribs; her aorta, glistening, pulses as a doctor carefully moves it to one side.

My daughter, now a healthy, normal 12-year-old, was one of 10,000 babies born every year with a congenital heart defect. Congenital, as we know, means “born with it,” not “earned it.” I remind myself of this each year as newspapers share tips for early detection which, they say, offers the best outcomes, but my daughter’s defect was never detected during routine ultrasounds, and I had excellent prenatal care. I read it all, when she was diagnosed: general stories in large print on baby-care web sites, and extremely specific, tiny-print medical studies written, by stroke of luck, by the one surgeon to whom we’d been referred.

Still, like many parents, I wondered all the usual things about my role in her bad luck: taking antibiotics for my sinus infection in my first trimester, and drinking a lot of hot chocolate, and sleeping less than I should have. Prevention, I knew from the ads, was even more important than early detection.

Despite my uneasiness, surgery repaired the problem partially when she was a year old, and more completely when she was 8, resolving her lingering challenges with swallowing around what turned out to be a recalcitrant aorta, migrating across her chest.

Each year, around rolled February again, with its fussy warnings to watch one’s cholesterol and blood sugar. In fourth grade, my little girl was the smallest in her class, the memories of her immediate post-surgical fat-free diet fresh in my mind. It was, the doctors had explained, to protect her from nicked chyle ducts, the body’s freeway for fat cells which had been left with several tiny fissures, collateral damage from a complicated procedure. Enough had been milked from a tube in her chest to send her home from the hospital, but any fat in her diet might have spilled into her chest cavity. Better, they said, to wait for the ducts to heal on their own. Six weeks on a fat-free and then low-fat diet had left my tiny daughter even tinier.

One day, when I’d finally allowed her to return to Hebrew School, I got a call from her teacher, who said she’d come unraveled when her special necklace – given to her before surgery as a talisman – came unclasped. Her big sister was comforting her; they wanted me to come and be sure she was OK.

I drove in a hurry, thinking of all the things that could be wrong: the diuretics messing with her electrolytes, the stitches opening, the aorta dangling loose from one suture inside her chest. I ran up the stairs, down the hall, hearing my daughter wailing from three classrooms away. When I walked in the door, my very soul aching to gather her up, she took one look at me and sobbed, “Mommy, I ate fat!

Her sister was apoplectic; trying to soothe her, she’d mindlessly offered her a bite of her slice of pizza. Only after little sister had swallowed did they both realize what they’d done. I held them both, one under each arm, and comforted them as I wondered: Would we end up in the hospital?

We didn’t, but the damage to my psyche was done with that howl of fear over one bite of pizza. I did everything possible to undo that association of fat with danger once it no longer applied. “Heart-Healthy,” the cereal boxes proclaimed, and my daughter asked me if she should have eaten more of this before. I tell her no, no, nothing could have fixed this but the doctor.

I watched her in the months that followed the second surgery, quietly desperate to see a change. It came slowly – a meal eaten without nudging, a request for another snack, the first time she ate a sandwich without gagging. She grew, eventually, filling in where she’d been spare and slight.

She is forever a “heart kid,” as children with CHDs are often called, her two scars testament to the surgeries that made her life easier and protected her from further damage. Every time she changes clothes with her back to me, I see what these surgeries left behind. The main scar, which is now white and dotted with marks from the stitches, spans her entire left shoulder blade. It seldom bothers her. The other, though, is small, thin and red, barely the length of a grape and as thick as a spaghetti noodle. It’s hard to find, tucked under her armpit along her side. It was where, in the week after her last surgery, a drainage tube dangled. From time to time, nurses would crouch at the side of the bed and “milk” the tube into a bulb that hung from its end, pulling fluid and chyle – leaking fat – from inside her chest. She cried, and the scar has left no sensation in an area spreading several inches around it. Sometimes it itches, but she cannot feel the relief when she scratches it.

I know the feeling. It is a numbness protecting what could be real pain and masking what may be real danger. Exercise regularly! Know your family history! I read on a poster in the school office, and my body is rubbed with spiritual witch hazel, the fear and anger evaporating into the air. Heart Month, indeed. Some things can’t be kept at bay with meditation and good sleep habits. Some heart months last for years.

Debi Lewis is a mother of two daughters and blogs at Her short fiction has been published in Eureka Literary Magazine, The 21st Century Times, and The Dangling Participle.

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