It was late summer, and I was sitting at my desk when my wife, Bonnie, called. She’d just taken our 8-year-old daughter Emily for her school physical. Bonnie’s voice quavered as she told me that our family physician had heard something “loud and unusual” in Emily’s chest. She recommended that we see a pediatric cardiologist. I sat stunned, trying to digest this news, so out of the blue, so unsettling, that I didn’t want to believe it.
At the appointment with the cardiologist shortly afterward, we were at first buoyed by his upbeat manner as he reviewed Emily’s EKG, which seemed normal. But his jocularity dissolved into somberness as he listened to Emily’s chest. Something was wrong. Next was the echocardiogram. We sat glued to the monitor, watching the beating of our daughter’s heart, wondering what it meant. Then the cardiologist confirmed what we feared—there was a problem.
He took out his paper tablet with a human heart stenciled on each page and began to draw as he explained what was wrong. Emily had a patent (open) ductus arteriosus. This is a vessel that substitutes for the lungs while a baby is still in utero. Once a baby is born and the lungs take over, the vessel is no longer needed and, in people with normally functioning hearts, it closes. In Emily’s case, the vessel never closed. As he explained the dangers of an open vessel, including infection, heart failure, and arterial hypertension, I felt a massive knot forming in my stomach.
The cardiologist said that the loudness of the murmur suggested that the vessel was narrowing and might close on its own. He recommended we watch and wait for six months. If no change were to have occurred, the vessel would need to be closed off surgically—which would involve entering Emily’s side, expanding her ribcage, collapsing a lung, and then suturing off the vessel. I nodded as he talked, trying to be cool and calm as I struggled to absorb this technical information. But when I thought of Emily, I realized that “going through the rib cage” meant cutting our daughter open with a knife. Leaving the cardiologist’s office, I had the diagram in my shirt pocket and kept it there for many days, as if the safest place for Emily’s heart was next to mine.
During the following week, my wife and I spoke to several friends and colleagues in the medical field who expressed doubt at the idea that Emily’s problem might resolve on its own. So I called the cardiologist who, this time, had a different story. When I asked if the vessel might close without intervention, he said, “Not likely.” He explained that he didn’t like to overwhelm “frightened parents,” especially since it wasn’t a “high-risk problem.” Upset that he hadn’t told us this in the first place, I was relieved to finally know the truth, even if it burst my temporary bubble of hope.
We decided not to tell Emily about the surgery until after the next evaluation in late winter. But in retrospect, I think she knew something was up. She had difficulty sleeping and struggled with headaches. From time to time, we’d ask her how she was doing, and she’d answer us much too cheerily before heading off to her 9-year-old life. It was at bedtime that she’d open up a little about her worries—mainly, whether she’d be okay. We’d stay with her, read books, hold her quietly. We’d tell her that it was normal to worry, that we’d be by her side, and that the doctors knew exactly what they were doing. In no uncertain terms, we told her that everything would be alright. And then we hoped we were telling the truth.
The follow-up visit with the cardiologist came as the first major snowstorm of the season bore down upon us, bringing subzero temperatures. Emily was quiet as we drove to the cardiologist’s office. The EKG went well, but she was terrified of the echocardiogram, with its gooey-tipped probe pressed hard against her chest, as well as the deep-sea whooshing sound of her heart, and the pulsing picture that went with it. She cried throughout. When it was finally over, she asked not to be in the room when the cardiologist came back.
Just as we feared, nothing had changed since the previous visit. The cardiologist walked us through the surgery again. Unfortunately, Emily, looking for us, returned to his office in the middle of his explanation. Forgetting that she didn’t yet know about the surgery, the cardiologist started explaining to Emily what to expect in the hospital. “So Emily, you’ll have your own room and the nurses are great,” he said. My wife and I sat grim-faced, wishing we could’ve snatched those words from the air before they’d reached Emily’s ears. In the end, we sat in the parking lot and explained to Emily that she’d need an operation. She cried. And so did we.
As the surgery approached, it was like we were building a nest for Emily, a nest of emotional twigs and branches. There were more phone calls to and from grandparents. My wife and I cleared our schedules of unnecessary meetings. We came home earlier from work whenever we could and talked more specifically with Emily about what was to come: yes, we’d stay with her in the hospital. Yes, she could take her own pillow. She’d be there for five days—yes, right through Easter. More questions: what color would the room be? Would the TV have “real” shows or “hospital shows”? Would her mother and I watch the surgery? We packed a bag containing markers and crayons and paper and crafts. She said packing helped a lot. In these small ways, we tried to pull it all together into a manageable whole.
The morning of the surgery, we waited beside her gurney for her surgeon, who was running late. A list of surgeries was written on a chalkboard nearby. Nurses and doctors came and went, masks up, booties on, all in blue. Finally, it was her turn, and we walked nervously beside her, stopping at the yellow line across the floor, the point at which parental care was relinquished to surgical expertise. Then we waited.
When we entered the PICU after surgery, we weren’t prepared at all for what we saw. Emily was alone. As she struggled to sit up, she leaned over to one side, reaching with her left hand for nothing at all. She was disoriented, grappling with her oxygen mask, two IVs, blood-stained linen, and a chest tube. The monitors hummed and clicked and gurgled. What startled us most—what was so upsetting that our older daughter, Rachel, had to leave—was seeing through clear surgical tape the jagged, bloody, nine-inch incision that ran from the middle of Emily’s back to her front ribcage. She cried out in pain. I tried to breathe, but there didn’t seem to be any air.
That evening, when she got up to walk, it was as if she were a toddler again. She stood by her bed for several minutes trying to get her balance, and when she took her first steps, she tilted precariously to the left, her arm clenched against her chest to buffer the pain. During the next four days, my wife and I took turns sleeping at the hospital. Rachel decorated the room with endless cards, balloons, and stuffed animals sent by well-wishers. We took over as much of her care as possible, patting, sometimes pounding, her back at regular intervals to keep her lungs clear, helping her “walk the wall” with her fingertips so the muscles on her left side wouldn’t atrophy. Each day, Emily gained strength and humor. When they removed the chest tube, she joked that the orange juice she was drinking might drain out of the hole onto the floor. We went home one day earlier than anticipated, relieved and hopeful that our long journey was ending.
At our post-op visit the following week, we sat together joking in the waiting room. The cardiologist greeted us warmly and began the exam. Within one minute, we knew something was wrong. He listened too long, his face too sober. He asked Emily to lie down and he leaned in closer, listening intently. Then he turned to us and said, “I still hear a sound. We need to do an echo.” With that, Emily broke into tears as we sat stunned and afraid.
The echo revealed that the surgery had fixed one problem but exposed another. The cardiologist explained that he’d found a second murmur. My face flushed with cold sweat as he talked about heart diseases, MRIs, and invasive procedures, before adding that it was likely just a “curiosity.”
During the ensuing few weeks, the cardiologist consulted with colleagues near and far. In the end, he concluded that the new sound was likely being caused by a “misshaped artery” in Emily’s chest wall: an anomaly, but not a problem. Of course, this wasn’t the neat, triumphant ending to our journey that I’d hoped for. It wasn’t really an ending at all. The “curiosity” remained, and would be woven into our lives from that day forward.
In the meantime, Emily started soccer practice and planned sleepovers with her friends. We planted a butterfly garden together full of lupines and pinks and asters and foxgloves. Bonnie and I got the wicker out and hung the porch swing, the spring air now warm and soothing. Rachel readied herself for the prom and graduation and college. Gradually, we put our anxiety in its place and went on.
The Cloud of Unknowing, a famous book of medieval Christian mysticism, speaks to the fog of uncertainty that limits our ability to grasp the larger meaning of life. In the months leading up to Emily’s surgery, our lives were surrounded by that fog and the helplessness and free-floating doubt that come with it as we tenaciously held on to the hope that everything would turn out fine. But after the new problem was discovered, albeit a minor one, we again had to face the nagging reality that uncertainty is one of life’s givens. We may pretend it isn’t, but it’s always there, if only on the edges of our awareness. The question is how to handle uncertainty that doesn’t simply come and quickly go, but stays on.
I recently had dinner with Emily, who’s now 30. I told her I was writing an essay about her surgery, trying to make sense of it for myself. When I asked what she recalled, she said she remembered being afraid of needles and the IV, being upset that she got a card from her classmates because she didn’t want them to know she was in the hospital, being hunched over in pain, and needing to do exercises. She remembered asking her mother if she was going to die. She remembered the doctor’s notepad full of hearts, and his red and blue markers. She paused and then added, “Most of all, I remember never feeling alone.”
Ultimately, that’s what strong and healthy family bonds are all about—invisible lines we cast out to each other that we hope will be steadfast and resilient, impervious to the uncertainty that can envelop us. When clouds begin to shroud us, no matter how dense and threatening they seem, it’s those bonds that can sustain us, cradle us, and shepherd us on, however uncertain our journey may be.
Illustration © Adam Niklewicz
CategoriesFirst Person Families
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