I still miss those pajamas — my hospital pajamas — white with blue roses and thin stripes. My mother made the pajamas for me when I was seven. It was my first trip to the hospital to see if doctors could divine the odd sloshing rhythm that had made my heart unreliable since birth. Whatever the cause, it was not benign because my body had begun a dangerous seesaw. Every growth spurt meant I had managed to live that much longer, was perhaps capable of surviving my fickle heart, yet every inch of height was a new burden and a simple act like walking would sometimes leave me spinning, or gasping or blue-white still.
Barium. An alkaline earth metal. Number 6 on the periodic table. A soft, silver-white, chemically active, poisonous metal used for spark-plug electrodes and in vacuum tubes. In moist air it may spontaneously ignite. Barium carbonate is used in glass, as a pottery glaze, and as a rat poison. Barium chromate is used as a paint pigment and in safety matches. Barium sulfate is virtually insoluble in water and acids; it can be used to coat the alimentary tract to increase the contrast for X-ray photography without being absorbed by the body and poisoning the subject.
—-InfoPlease.com
Here, Drink this. Doctor’s appointments often appeared out of nowhere. It’ll taste like a chocolate shake. This was a new room and a new doctor. Norman Gootman. I liked his thick black frame glasses and the curly hair he tried to tame with something that smelled like my father’s aftershave. Can you finish it? There’s a little bit left. I nod. He would come to know that I didn’t say much but listened to everything. We’re going to take pictures of your heart and the chocolate shake is going to light you up inside. He had my attention. I wanted to see this. Put your chin here. Can you get closer? Good. Hold your breath. This part I knew. I turn right, then left, then front, holding my breath, not moving a muscle, imagining myself glowing like a Christmas tree.
A few weeks later my mother packed a bag with some books and my new pajamas. Her cigarette gyrated on her lip as she talked. Perhaps she told me that I needed to spend a week in the hospital, that I needed a procedure so they could get a better look at my heart. Perhaps she said it was to be an operation, that the doctors would make me go to sleep because they needed to insert some tubes, but if I was asleep it wouldn’t hurt. Perhaps I understood all this but maybe not, as I was seven and how much was I really going to grasp. I just remember my mother’s eyes and how I thought they might ignite as I handed her my Etch-A-Sketch.
A German surgeon, Werner Theodor Otto Forssmann, was the first to work out a practical system of cardiac catheterization. He inserted a catheter (a long, thin, flexible rod that is opaque to X rays) into a vein in his own elbow and pushed it along the vein until it reached the heart. This made it possible to study the structure and function of an ailing heart and to make accurate diagnoses without the necessity of exploratory surgery.
—Asimov’s Chronology of Science & Discovery
To no surprise I developed a fascination with stories of pale young girls barely tethered to life. Sleeping Beauty, Snow White, but especially Beth in Little Women. Beth faded as I seemed to be fading and I never knew if my parents let me read the story without knowing that particular plot point, or as a way of letting me know what might be happening.
“I only mean to say that I have a feeling that it never was intended I should live long. I’m not like the rest of you. I never made any plans about what I’d do when I grew up. I never thought of being married, as you all did. I couldn’t seem to imagine myself anything but stupid little Beth, trotting about at home, of no use anywhere but there. I never wanted to go away, and the hard part now is the leaving you all. I’m not afraid, but it seems as if I should be homesick for you even in heaven.
–Little Women, Louisa May Alcott
Despite barium drinks, two cardiac catherizations and endless X-rays Dr. Gootman could not see inside me well enough to know just how my heart was broken. The spells, as my mother called my bouts of unconsciousness, became more frequent. There were warnings sometimes — the world would crinkle at the edges, my attention would shift from my book, or the fork in my hand, or the sock I was putting on; colors would bleed away, black patches would begin to fill my sight and I’d have enough time to say to whomever was near — it’s happening. I was gone for the chaos and mouth-to-mouth resuscitation. I would wake cold, with a metallic taste in my mouth and a foggy indifference to the panic I had caused. My parents waited as long as they could. When the doctors said it’s unlikely she’ll live another year they said yes. Open her. See what you can see. Fix it if you can. It was 1967. I ‘d made it to eleven.
On November 29, 1944, a small, frail child was wheeled into an operating room at the Johns Hopkins Hospital. It was the first attempt to treat a congenital heart malformation that robs the blood of oxygen. This life-threatening condition is often signaled by a bluish or “cyanotic” cast to the skin, hence the term, blue baby. The procedure joined an artery leaving the heart to an artery leading to the lungs, in an attempt to give the blood a second chance at oxygenation. It was the first blue baby operation and came to be known as the Blalock-Taussig Shunt.
—The Blue Baby Operation Web Exhibit
I don’t like the sound of whining saw blades. Perhaps it’s just the frequency, a particular pitch that makes me uneasy, makes me want to edge away when someone fires up a workshop saw. I tell myself I was unconscious, my brain switched off, when they sliced me from sternum to shoulder blade and sawed my ribs, but I wonder sometimes about the knowledge hoarded there, trapped in mute bone marrow.
I woke teeth chattering, tubes attached to arms, nose, chest and groin. My hands wandered my body, fingering this new wiring and stopped at the ones near my ribs. My muddled brain was aware that this was the source of the oddity. A nurse lifted my hands away. You can’t touch that honey. She held an ice chip to my lips and I sucked on it until my tongue no longer stuck to the roof of my mouth. I’m cold, I managed to get out. You’re on a bed of ice. We have to keep your temperature down. Try to go back to sleep. It seemed peculiar at the time, to try to sleep when I was shaking so hard I thought I might fall off the bed and I couldn’t keep my hands still. My mother came in and frowned at my blue lips. It must have been the first time she had seen me since surgery and my teeth clicked out It’s ok. It’s ok. I kept forgetting I shouldn’t touch the tubes and the nurse asked my mother to watch my hands or she might have to tie them down. A wave of doctors appeared and stood murmuring over me. I couldn’t take in what they were saying but I saw Dr. Gootman’s stethoscope in his pocket and reached for it. The rubber conduit between the scope and the earpieces was not unlike what was implanted in my chest. I closed my eyes and fingering the tube, went back to sleep.
The principle of the heart-lung machine (also known cardiopulmonary bypass) is actually quite simple. Blue blood withdrawn from the upper heart chambers is drained into a reservoir. From there, the blood is pumped through an artificial lung. Oxygen gas is delivered to the interface between the blood and the device, permitting the blood cells to absorb oxygen molecules directly. Now the blood is red in color, indicating its rich content of oxygen destined to be delivered to the various tissues of the body. Finally, the heart-lung machine actively pumps the red blood back into the patient through a tube connected to the arterial circulation. The heart-lung circuit is a continuous loop; as the red blood goes into the body, blue blood returns from the body and is drained into the pump completing the circuit.
—-The Heart Surgery Forum
I heard a thud. I opened my eyes to see my mother on the floor. I think the nurses who came running were worried that my mother’s collapse might excite my newly mended heart, but I was immune to my mother’s drama, perhaps because of the drugs they had me on, or because of my pinpoint focus on my own dilemma. Years later my mother told me that she was watching my blood cycle in and out of the heart-lung machine, thinking how much it reminded her of a washing machine. Her eyes traveled the electrical cord where it was plugged into the wall and she suddenly realized that all someone had to do was trip over the cord and I’d be dead.
It seems to me that I must have this next part wrong. I am asleep, but not completely. It’s more like I can’t open my eyes or speak, but I can hear voices and feel a tug at my chest. The tubes are being removed. I remember this in the intensive care unit but I think it couldn’t have happened that way. I should have been in an operating room, under anesthesia, unaware. But in that moment, whatever it is I am remembering, I learned that how you die matters. I know if my heart hadn’t started to beat on its own I would have left the earth blind and mute.
So I was lucky- it wasn’t my heart that was broken, it was my heart’s plumbing, the vein and artery that cycles blood from heart to the lung and back to the heart were fused. Half my blood supply never got out to my body so I was always working with too little, my heart and lungs pistoning double time to keep me going. A chest X-ray now reveals a long white curve, an artifact of my surgery.
But for the most part my surgery is invisible. Few people would ever know except my arms are etched with a collection of small incisions. Occasionally someone will notice and I see a question flicker. One scar is a tattoo of pale skin on the inside of my left arm, there is a an inch and a half slash on the inside of each elbow, but the one that usually gets noticed is on my inside right wrist. Small, neatly stitched, but clearly a scar. I reach to grab a cup of coffee or take a package. The question flickers. I offer nothing.
New York Times Obituary: Oct 26, 2001 GOOTMAN, NORMAN, M.D.
The founding Chief and Chief of Pediatric Cardiology at Long Island Jewish Medical Center from 1965 to 1988. He was Professor of Pediatrics at the Albert Einstein College of Medicine and made seminal contributions to the medical literature on pediatric cardiology. His talent, dedication and hard work contributed in great measure to the establishment of the Schneider Children’s Hospital of Long Island Jewish Medical Center. He was a compassionate and dedicated physician and a gentle man who will be greatly missed by his family, friends and colleagues.
Loretta Williams is from the East Coast and finds herself rather misplaced in the nonstop sunshine and rabid car culture of Los Angeles. She makes her living as a public radio producer and editor. When she’s not up to her eyeballs in work she’s writing short stories and transforming her yard into a native plant garden.