by Avi Z.
I am a children’s book writer and my husband, Peter, is a science enthusiast. Our left-brain/right-brain interpretations of the world usually complement each other, but at precisely 6:15 p.m. on October 24th, 2002, our lives were shaken so severely that the natural order of things could not be sustained.
We were all adjusting to our “new normal” family routine with our six-day-old newborn. I was close to tears, exhausted from a sleepless night and frustrated nursing. Our baby lay listless on my chest—I should be grateful. He’s a good sleeper. But something didn’t seem right.
After a phone-consult with a nurse, we took Michael in for a check-up. Dr. B. cradled our sleepy baby in his arms, crooning over him. Michael was quiet. All seemed okay. Almost as an afterthought the doctor suggested doing a blood test.
Nearly forty-five minutes later, Dr. B. came back. “It looks like Michael has a bacterial infection,” he said. We’d get antibiotics at the hospital and be home in no time.
We arrived in the NICU a little bit after 10am. Soon hours blurred into the afternoon and early evening. The ocean-like swish of monitors created a deceptive calm in this surreal environment.
My eyes suddenly shifted to Michael’s belly button where blood was oozing from his IV site. “That doesn’t look right,” I said to the nurse. She applied pressure to make it clot. “Don’t stop,” the doctor barked, then pushed her aside to do it himself. “His heart rate is too fast,” he added.
A crew of doctors and support staff descended like locusts with machines while we sat in a small waiting room rocking back and forth in each other’s arms not knowing, afraid to know, afraid not to know.
We had been waiting for nearly four hours for a miracle when the doctor finally came in unmasked and ungloved. “We tried all that we could. Time of death was recorded as 8:45 p.m.” Describing the rest of that night defies words. A black cloud of despair consumed us. It was incomprehensible.
Being a mom was supposed to be my routine. What was I to do? Leaving the house meant confronting more pain inflicted by the outside world. Imprisoned in my mind and trapped in a body I didn’t want—a body that kept reminding me of what I could not have.
Terrified that my precious few memories of Michael were slipping through my cobwebbed mind, I wrote down every detail until my fingers ached and my stiff body could handle no more. Writing was cathartic and kept me sane, but for the first time in my life, it felt unsatisfying. What I needed was not an abstract delineation of emotions, but a scientific investigation into how and why this happened to us.
Thinking like a scientist became my salve. I could deal with facts without emotions.
Step 1: Ask the Question.
How could this happen to us?
Over and over I played the nightmare reel. A pediatrician friend reviewed our thick file of hospital labs, giving us our first clue. “Newborns are so much more susceptible to sepsis,” she said. “An infection that adults shrug off easily can overwhelm a newborn.”
It would take some time before I could hear the message my body clearly knew. Something was wrong—still very wrong—with me.
Step 2: Conduct Background Research
One windy sleepless night, I pulled out my writing journal and re-read entries of the days leading up to Michael’s birth:
October 14, 2002
2:00 p.m.– I leaned over to get the phone and felt a sudden stabbing pain in my side.
9:00 p.m. I couldn’t get up off the sofa without wincing in agonizing pain. We rushed to the emergency room. The fetal monitor chimed happily. The baby was okay, but perhaps I had appendicitis?
October 15, 2002
I left with my appendix intact and a diagnosis of a ruptured ovarian cyst.
October 17, 2002
I woke up to back pain and abdominal pain that quickly escalated to chest pain, and shortness of breath. My breathing became so labored that it felt akin to a severe asthma attack.
1:00 a.m. I suddenly spiked a high fever, but no one seemed particularly alarmed.
I closed the journal, laying it down on the table. My hands trembled. My throat felt suddenly very dry. I made the obvious connection.
Step 3: Construct Hypothesis
“I was sick before I delivered. I must have made him sick. You know that,” I said, barely able to get the words out.
“We don’t know,” Peter said gently.
“I have to know.”
To pursue the scientific method further meant treading on a truth so painful—I infected him. For the first time, Peter could support but not join me on my furious scientific inquiry—the truth was too painful.
Step 4: Test Hypothesis With An Experiment
We waited in daily dreaded anticipation for a phone call from the medical examiner’s office. Finally on Thanksgiving eve the phone rang: “Myocarditis–the tissue around his heart was inflamed. “We can’t know the etiology, but it is likely due to a virus,” Dr. Z said.
There was my answer—myocarditis but why? What caused it?
One restless night in February, I came across an article describing the Coxsackie virus, known also as hand, foot, and mouth disease because a rash often accompanies the sores in the mouth on the hands and feet. My fingers stiffened with a sudden realization.
Our 2 year-old daughter had it…What if that was when I got infected? And then . . . no! I couldn’t think . . .
I fidgeted uncomfortably on the sofa. For a short while I fell into a stupor of mind-numbing television. But my thoughts gave me no peace. If it was true that she’d brought the virus home from preschool, I swore I would never ever tell her.
Later that night I found a new post online talking about a rare strain of Coxsackie virus also known as devil’s grip, or Bornholm disease. Symptoms included severe abdominal and chest pain, fever, headache, sore throat, malaise, and extreme myalgia. I read that the symptoms could come and go for weeks in adults. This is it!
Step 5: Analyze Results
A conclusive antibody titer blood test would determine whether or not I’d been exposed to this particular virus. If high levels of antibodies to the type B Coxsackie virus strain were detected in my blood, it would indicate that I had been recently infected.
It was the finality of knowing that my illness caused Michael’s myocarditis that was too much for Peter. It seemed that the scientific journey had come to an end. ” He didn’t want me to blame myself. I didn’t want him to blame me.
Several more months rolled into spring with a mix of jubilant ecstasy and terror when I discovered I was pregnant again. I was at the end of my first trimester when a child in our daughter’s class had been diagnosed with the Coxsackie virus.
I would get the blood test. Two weeks later, I had my answer. My hypothesis was right. I had elevated antibodies to the B strain of the Coxsackie virus.
Step 6: Drawing Conclusions
Fall greeted us with the painful realization that time marched on without our Michael. I would never know how I got such a rare form of this virus, but I did know that the son growing inside me had a fighting chance because of the antibodies he was getting in utero.
On a snowy day in December, our prayer was answered and our second son was born healthy with no complications. Our hearts swelled with joy and gratitude.
Step 7: Reporting Results
Only a year after Michael died, a new antiviral medication for Coxsackie virus had come on the market, curing almost all the myocarditis cases. In 2004, two years later, a new drug called Pleconaril also successfully reversed most of the disease’s fatal complications.
The moment of discovery crushed my spirit. I felt overwhelmed with deep anger and despair that the antiviral medication became available too late for us, but in turn a feeling of hope for the future subsumed those feelings.
Ultimately following a scientific path to discovery had its rewards. Answering the “why” our Michael died made my head satisfied even though my heart still hurt. To begin healing my heart, I had to go back to my world of imagination where I gave myself permission to picture Michael as my writing muse watching over us.
Avi Z. is a children’s book writer living in suburban Maryland. This is an abridged article first published by Story Collider’s magazine in March, 2012. http://magazine.storycollider.org/2012/features/when-science-eases-the-mind-if-not-the-heart/