My Daughter’s Heart

Today I curled around my tiny daughter, who lay on the hospital bed, and I watched what she watched: a five-foot tall glowing cylinder of water. Inside the cylinder was a thinner cylinder of bubbles rushing upward, and we watched together as the whole thing glowed pink then blue then green and as the bubbles rushed to the surface, ushering with them little plastic fish, which then floated down to the bottom again.

The gadgets in the cardiology unit of Cincinnati Children’s are impressive.

Unlike human genetics, which is a windowless small wing covered with garish and discordant murals (Safari on this wall! Pirates on that!), the cardiology unit is peppered with bona fide art. In the waiting room, there’s an entire wall of unique heart sculptures, each set in its own glass case, inlayed into the wall, painted a different way. In the examination rooms, artists’ statements are posted on plaques beside paintings, just like in a gallery. Later, while Fiona was sleeping, I stared at a Mackenzie Thorpe—a little kid pulled a spotted dog on a one-wheeled barrow. On the ground were little flowers in the shapes of hearts. I wondered if every room had a piece of art that nodded to the organ we were all here to talk about.

The heart. We were here to learn the measurements of Fiona’s heart. That was why she lay quietly on the hospital bed, looking at the bubbling light fixture. We were waiting on the sedative, hoping she’d get calm enough that the technician could snap a hundred photos of her tiny little heart.

And she did calm down, though she never fell asleep because she’d spit most of the sedative out. And the technician did flick on the sonogram machine, showing its cone of static on a black screen, as when someone first photographed Fiona—her body just a bean in my womb. When the technician passed the wand over her chest, he captured the flat, gray flickering thing that was, beneath her ribs, a wet red heart.

The nurses came in to check on her, to coo at her, to giggle with her and tell me how gorgeous she was. Thank you, I said, like someone was telling me Audrey Hepburn was gorgeous. Yes, of course, she’s gorgeous. All the while, the lights were dimmed low and the light fixture bubbled and Fiona rested her hand gently on the technician’s sonogram wand.

It was a lovely way to spend an early morning.

You’d never know we were measuring her congenital heart defects.

***

Genes are funny things. Miss a few, and a whole host of systems are affected. I learned recently that Fiona is missing approximately 121 genes. It’s estimated that the human genome contains about 20,000 genes. I plan to know more about genes in my lifetime, but this is about all I know: they are not like pages of blueprints. They are like architects. Miss a few, and the others have to compensate. Sometimes the others can’t. Sometimes your window-maker is missing, and the other architects do their best to make windows, but their best isn’t good enough, and so the windows don’t really work. Fiona’s other 19,879 architects did the best they could to make what she needs. They made perfect hands and feet, for instance, and honey-brown hair and they made her a girl and gave her blue eyes and perhaps an interest, a strong interest, in terry cloth. But they also produced a 35-degree scoliosis in her lumbar spine, a tendency to seize when she’s feverish, a brain that has trouble learning how to hold a spoon, and yes, two heart abnormalities. A hole in her heart, and a narrowing of her pulmonary valve. Which means more blood is going to her lungs than is needed, and more blood is rushing into one ventricle than is needed, and though both cases are mild, all of this could produce a strain. Eventually.

After the echocardiogram, Fiona finally succumbed to the sedative and fell asleep, and I waited for the doctor to tell me the results. Were her heart abnormalities resolving themselves, worsening, or staying the same? Three pathways. Three roads diverging in a blood red wood, and we’d learn which way her heart’s been beating this past year.

The doctors these days are now my age. It’s a strange thing. They were once old and persnickety and had leathery skin and smelled like antiseptic. That’s how I saw the pediatrician of my youth. Now they walk into the room with spiked hair and references to the latest pop song. Now they have pimples. Now they tell me they are starting their own families, their wives or themselves just twelve weeks along. They are, in some cases, younger than me, and folks, I don’t consider myself that old.

So today’s cardiologists walked in, the attending with gel-spiked hair, his fellow a smaller guy with a proclivity for yawning, and they told me the news. The hole in Fiona’s heart was neither shrinking nor growing. The narrowness in Fiona’s pulmonary valve was neither narrowing nor expanding. Status quo, the doctor said. Staying as is. Mild heart disease, the fellow said. No reason to intervene right now. Still a chance the issues could resolve themselves.

“Congenital heart defects are some of the most common,” the attending said. “In all people, not just people with chromosomal abnormalities.”

“Why?” I asked. “Because the heart is so complicated?” I was thinking of the giant map of the heart to my right, and all those ventricles and valves opening and closing, taking the blood in from the neck, sending it out to the legs. All the ways the doors could jam or turn trap.

“Good question,” he said, which I’ve decided all doctors are trained to say, but which nevertheless works in making me feel accomplished. Yes, hearts are very complicated, I thought he’d say. The organ that I’ve chosen to devote my life to is a complex, twisted work of art, I thought he’d confirm. But in an unexpected move, the heart doctor diffused the potential romanticism of the heart. “It’s really not that complicated. It’s just a pump. It only looks complicated because we can take pictures of it working. But if we could take pictures of, say, the thyroid working, it might be just as complicated. But we can’t. We can only measure the hormones. So there could be just as many possible congenital defects with other organs. But we can’t measure them as well. So we don’t know.”

Those blob-like organs—the kidneys, the liver—they are mysterious little suckers. There are secrets in their amorphous, indistinct flesh. The heart is obvious. It shows off its dance, and it even makes its own music, and then we can photograph it and tap our pens to its beat. And because people are amazed by it, whole art-adorned and expansive wings of hospitals are devoted to it.

If the hole doesn’t resolve itself by the time Fiona’s four, they say it probably never will, and at that point we’ll consider ways of fixing it, and fixing it might improve the narrowing of her pulmonary valve, but it might not, and either way they plan on leaving that valve alone. It’s the hole they’d like to fix. The hole that they’ll keep an eye on. Every year, Fiona will be lulled into chemically-induced drunkenness fit for a Fiona-sized person, and a technician will press a wand into her chest and click and snap and forward the images to the doctors, who will read them and tell me yet again whether we’re walking down the worsening road, the bettering road, or the road that just stays the same.

And every year I will lie in the dark with my daughter and watch the light fixtures and listen to the bubbles, thinking about all the mysteries inside her, all the things no sonogram will ever find, all the ways her architects had to make do.

 ***

If you want to read something good about the heart, I highly recommend The Wet Engine, by Brian Doyle. Doyle’s son was born with only three chambers in his heart, and he writes a compelling little ode to the organ and to the cardiologist who saves his son’s life. I told Fiona’s cardiologists, they should totally read it.

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6 thoughts on “My Daughter’s Heart

  1. When Chris was hospitalized with his onset of diabetes, by the third day (1.5 days in induced coma) his veins were so constricted and so much blood had been drawn that drawing more blood was becoming increasingly difficult. Late at night, a nurse needed to draw more. She told me how difficult it would be and asked if she could take him into another room to do it. Yes, I said, but only if I can come. She said, “You don’t want to be here for this.” Yes, I do, I assured her, yes I do. I didn’t really–she was right–but I also didn’t want Chris to be alone. And so I followed her, Chris (a large 1-year-old) in my arms. She said, “If you’ll hold him down, I won’t have to use the straps.” And so I held him down as gently as I could. Nobody used straps for anything. She found a vein near his ankle. He screamed. I bit my lips til they bled. Add the pancreas to the list of mysterious organs.

  2. Dear Heather,

    It is so powerful; your descriptions brought me right to the bedside. I am one of those adults with a congenital heart defect — an abnormality of the tricuspid valve. Doctors have urged me to fix it, leave it alone, wait and see and maybe then —- (fill in the blank). I’m in the wait and see world, as I see you are: status quo, but not forever. What I’ve learned is that it’s wonderful and terrifying how much and how little doctors know, how important it is to keep one’s own counsel. Those messages we get out of nowhere (nowhere?) about our bodies are just as important as the data medicine gives us. Knowing how to weigh all of it together can be excruciating. But that’s the road. I, too, discovered Brian Doyle’s wonderful book, The Wet Engine, and recommend it highly. It’s not only informative but an amazing read. Thank you again for sharing Fiona’s journey.

    • It is so true to be your “own counsel” as well. In my case, my daughters advocate. There is nothing more frustrating then realizing something doesn’t feel right and not being able to articulate it, and learning to weigh quality of life vs. finding the answer.

  3. Dear Heather – I’ve known you since the days in Dr. Ed’s office as a little girl. I now see his nephew. Your Mom and I have become friends over all these many years and she has kept me posted on Fiona. Our church prays for her every Tuesday morning and she is in my constant prayers. What a wonderful tribute to your daughter! You
    have expressed all of the deep reflections that my daughter did when her son was
    born 23 years ago with a syndrome. You’re doing a great job. My thoughts are with you and my prayers are for Fiona’s continued normal development.
    Bernice

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