Not Her Heart

heartWe entered the children’s hospital on a dark December evening. We didn’t bring a child.

Up the escalator to the lobby, to the registration desk for our badges, we made our way through the mazes of floors and elevators until we reached a place that looked like nothing we’d ever seen before: a carpeted hallway, two small couches, and an empty coffee table outside a closed door with no window.

We were not visiting the doctor in an examining room, we learned. There would be no paper-covered table, no swiveling chair, no cheerful posters. We were visiting the doctor in his office itself.

The door swung open, and he shook our hands. “I remember you guys,” he said, smiling. “It’s nice to see you again.”

The last time we’d seen him, he’d peered through the glass door of our baby daughter’s room in the Pediatric ICU seven years before, looking surprised that she was sitting up and waving to him. “She’ll be a new little girl when she heals up,” he’d said. “Just you wait.”

It wasn’t nice to see him again. I wished we’d never had to see him again. Instead of saying that, I said, “I’m surprised you remember us. It was so long ago.”

“Oh, no,” he replied, ushering us past rows of cubicles and closed office doors. “I absolutely remember you. Such a nice family.”

We entered his office, a small, crowded space full of papers and books. On his desk, I saw a photo of him with his family. There were daughters, I noticed. We sat across from him, and my husband David asked if we could record the conversation so that we could listen later.

“Sure,” the surgeon said.

We looked at each other for a moment. Where to start? What did he think we should put our daughter through this time?

Eventually, he put his hands down on the desk and said, “I think we can help Sammi.”

Then he began describing the anatomy of Sammi’s chest. Her aorta was trapping her esophagus between itself and her trachea, between itself and her chest wall, creating all the bends we had discovered in the test weeks ago in which she had swallowed barium while a radiologist watched on an X-ray. What we hadn’t known until now, explained the surgeon, was how to fix it. That was where the complicated, traumatic CT scan had come in. With that scan, the surgeon had learned everything he needed to know.

And then he drew us a picture:

Sammi's heart

The solution, he told us, was to move the esophagus away from that part of her chest and over to the left side, which is where ought to be, and stitch it to the abdomen or chest wall so that it would not be able edge its way back. In addition, he intended to do similar procedure for the aorta, attaching it with stitches to her spine or sternum, a procedure called aortopexy.

He pulled up a series of files on his computer to show us the 3D images he’d had generated from the CT scans. Turning them left and right, rotating them with his mouse, he showed us places in our daughter’s chest that we had never seen and would never see.

“It’s pretty great that we can get these pictures now,” he said. “Otherwise we do these procedures flying blind.”

Up the wall above his desk and around it were licenses and certificates. He showed us a textbook to which he’d contributed articles on these types of procedures. We talked more about the surgery — where he’d do the incisions, what the risks might be, how long she’d be in the hospital. I took notes, and David’s recording kept track of all the things we’d miss.

Eventually, there was nothing more to ask.

“Can I take a picture of this drawing?” I asked before we left.

“Sure,” he said.

David and I sat back down on the couch outside the door to the office suite to regroup. I recalled the inhuman-feeling images of Sammi I saw on ultrasound when she was inside me — the human-shaped but still distorted vision I saw of the person who would eventually laugh and grow, eat blueberries and grin, hug and love — and looked down at the image I’d snapped of the complicated tangle inside her chest.

It wasn’t her. It didn’t look like her, and it wasn’t. She was not her body, and the dissociation I felt was the very protection I needed. The discussion of her surgery was not a discussion about her, the way her heart was tangled was not the way her heart really worked. They were separate, and the more I could maintain that belief, the easier it would be to get through it all.

We walked away from the surreal office suite and back out to our car, to the trip back to our children, hearts and all.

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9 thoughts on “Not Her Heart

  1. Beautiful, as always.

  2. I’m reading too, Debi, every post. I’m so curious what your thoughts are now about what you want to do with these blogs. They are so intimate.

    • Thank you, Julie! Sometimes it feels like writing into a void. My long-term goal is to tell this story in a book-length version, but with some more clinical, informational text in sidebars to share more practical information. Stay tuned!

  3. This is so real and vivid. I can absolutely picture you and your husband, two worried, humbled parents in love with their child with a heart that is both an organ as well as what we all think of as a place filled with love. A piece of your beautiful daughter drawn on a piece of paper by a doctor. That’s quite a profound moment to reflect on.

  4. What a long journey! You told it beautifully! A heart IS more than an organ and a muscle! Great post!

  5. Wow. This is just so wonderfully and heartbreakingly written. I’m so glad I got to read it. (I found you on the Publishing Bloggers FB page, and I’m happy I did!!)

  6. […] months earlier, she’d undergone major cardio-thoracic surgery to move her meandering aorta away from the places where it was smashing her esophagus nearly […]

  7. […] my daughter’s aorta — the main artery delivering blood flow to the body — was surgically pinned to her ribcage several years […]

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