“See those puffy white clouds?” I said. “If you look carefully you might catch a fairy taking a nap.” Our two-year-old skipped along the sidewalk in her imitation of a fairy dance. “Light bends, making us see clouds,” my husband added, swinging her hand back and forth.
I am a children’s book writer and Peter is a science enthusiast. Our left-brain/right-brain interpretations of the world usually complement each other, but there would come a time when I’d find myself suddenly yearning for the kind of scientific understanding that excited him, but had never before enlightened me. In 2002, at precisely 6:15 p.m. on October 24, our lives were shaken so severely that the natural order of things could not be sustained.
It began as a crisp autumn day. We were all adjusting to our “new normal” family routine with our six-day-old newborn. Our daughter snuggled between us as I held Michael trying to nurse him.
“Just a little bit,” I coaxed him.
“Come on, baby,” our daughter mimicked.
I was close to tears, exhausted from a sleepless night, and frustrated at his disinterest in eating. He lay listless on my chest—I should be grateful. He’s a good sleeper. But something didn’t seem right.
At 8:30 a.m., I called the pediatrician’s office and spoke with a physician assistant. She gave me some suggestions about nursing and was about to hang up when she changed her mind. “Maybe bring him in just to be safe.”
Our daughter was so excited to sit next to his infant carrier. She smoothed his blanket neatly and insisted on holding his little fingers in hers. “I have a big brother,” she said.
“He’s your little brother,” we corrected her.
Kissing him on his forehead, she scrambled out of the car and went happily off to school. Beside him, she suddenly looked so big and grown up.
It was a busy Thursday morning in the doctor’s office. Michael slept heavily while we waited. When Dr. B. finally came in, he cradled Michael in his arms, crooning over him. Michael was quiet. At first Dr. B. thought it was likely that Michael just needed some extra help latching on and suggested we meet with a lactation consultant. Almost as an afterthought, he turned back at the door. “Let’s do a quick blood test to check his white cell count.”
The nurse had a hard time finding a vein. We cringed as Michael was repeatedly pricked. Surprisingly, he hardly seemed to mind the ordeal and went easily back to sleep.
Nearly forty-five minutes later, Dr. B. came back. “It looks like Michael has a bacterial infection,” he said. “His white cell count is a bit high and his platelets are low.” Dr. B. didn’t think this was anything too alarming. “After a dose or two of antibiotics and fluids, you’ll likely go home later today or tomorrow,” he assured us.
We left the office a little after 10 a.m. and headed to the Pediatric Unit of the hospital. I remember choosing Michael’s soft white sleeper that morning. Seeing him so pale and fragile in his little diaper triggered a flood of tears.
“We’ll take good care of him. We are just going to place the IV and make him comfortable under a warming lamp,” she said. “We’ll call you in right after.”
They came back minutes later to report that they were concerned. They too had a hard time finding a vein. His temperature was dropping. “We are transferring him to the NICU, where they are better equipped,” the nurse said.
Hours blurred into the afternoon and early evening. We were still in the NICU with no sign of going home yet. “Maybe another day or two,” the doctors said. Peter and I gazed at our son’s pinkish newborn body exposed under a heating lamp. A nurse tinkered with the equipment in the room. The ocean-like swish of monitors created a deceptive calm in this surreal environment.
My eyes suddenly shifted to Michael’s belly button, where they’d managed to put in an IV. Something felt wrong. “That doesn’t look right,” I said to the nurse. Blood was oozing from his IV site. She applied pressure to make it clot, causing him to writhe in pain.
“Don’t stop,” the doctor barked at the nurse, then pushed her aside to do it himself. “His heart rate is too fast,” he added.
The clock above read 6:15 p.m. when Michael gave a piercing cry. “Can I give him my finger to suck on?” I asked. In reply, the doctor pushed my hand aside and swirled the hospital-issued pacifier in his mouth. Michael cried pitifully, spitting it out, but his cries instantly gave way to an even more disturbing silence.
“He’s turning blue!” I screamed.
“Code Blue,” someone echoed.
A crew of doctors and support staff descended like locusts with machines.
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. A kind nurse came in repeatedly to give us status updates. “He’s a very sick little boy,” she reported. A few minutes later she told us that the doctors were working on him. At 8:30 p.m., she told us a cardiologist from Children’s Hospital had arrived to administer a sensitive procedure. She didn’t return. The bitter taste of panic overwhelmed us.
An hour and a half later, the doctor came in unmasked and ungloved. “We tried all that we could. Time of death was recorded as 8:45 p.m.” It was 10 p.m. We had been waiting for nearly four hours for a miracle that didn’t happen. We could hold his remnant shell, one that hardly resembled the little baby I’d nursed hours before, but first we had to fill out a mountain of paperwork. Describing the rest of that night defies words. A black cloud of despair consumed us. It was incomprehensible.
The next morning our daughter scampered downstairs and flew into my arms. I cringed at the contact with my engorged breasts, but almost welcomed the pain over the sickening numbness suffusing me.
“Where is my baby brother?” she asked. “I want to see him.”
“Our baby got very sick. Everyone tried to fix him, but they couldn’t,” we said. It was a weak explanation, but it was the best we could do at the moment. For a long time after that, we’d hear her say: “I have a baby brother.” She’d pause briefly, and then add—“he’s broken.”
Everyone was trying to fix us somehow—“You’ll be okay,” they said. “Time heals all wounds,” someone else murmured uncomfortably. Why did it seem like everyone expected us to “get over it” and “move on”? We were blessed with a lot of support, but too soon life resumed normally for others. Our lives were forever changed. Our world had stopped making sense.
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.
After a few weeks, Peter had to go back to work. Routines were important for him and for our daughter, but 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. Innocently, people would ask me “when is the baby due?” or inevitably I would see happy mothers with their newborns everywhere I looked. 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.
Doctors, counselors, clergy, friends, and even strangers offered banal advice on the stages of grief we’d go through in the coming months. It offered no comfort.
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. I had a new routine and a map to follow using the scientific method: 1) ask questions, 2) conduct background research, 3) construct hypothesis, 4) test the hypothesis with an experiment, 5) analyze results, 6) draw conclusions as to whether the hypothesis was true or not, and finally, 7) report those results to anyone willing to listen.
Step 1: Ask the Question.
How could this happen to us?
Over and over I played the nightmare reel—Why? Why? Why? 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.”
The first few weeks after Michael died blurred in a cloudy fog of numbness pierced by pain—pain from my swollen breasts and my uterus contracting, as well as chest pains, shortness of breath, and abdominal pain. “Anxiety,” said one doctor. “Grief,” another quickly dismissed.
I called a doctor friend asking her if she thought I was having an allergic reaction to Coumadin (blood-thinner medication I was taking as a precaution for a possible blood clot). “Your body is understandably run down from all the stress,” she said.
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
Something ominous was nagging me. I knew without quite knowing yet that my symptoms were somehow connected to Michael’s death.
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. In the process of documenting and mulling over details, I reached a state of near delirium from lack of sleep. Something ominous was nagging me. I knew without quite knowing yet that my symptoms were somehow connected to Michael’s death.
One November night when a tempestuous storm brewed outside my window and colluded with a cursed ineffective sleeping pill keeping me awake, I pulled out my writing journal and reread 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. “Sounds like a pulled muscle,” my doctor said. “Not much you can do about that.”
9:00 p.m. Peter was upstairs getting our daughter to sleep. I couldn’t get up off the sofa without wincing in agonizing pain. Peter called his mother to watch our daughter while we rushed to the emergency room. I was quickly admitted. The fetal monitor chimed happily. The baby was okay, but perhaps I had appendicitis? It wasn’t clear. We waited. It was clear that I would be spending my 35th birthday in the hospital. A kind nurse brought in a cupcake and wished me happy birthday.
October 15, 2002
12:00 a.m. I had regular contractions every five minutes for several hours. It hurt to breathe. I was exhausted. Peter nodded off in the hard wooden chair by my bed. I let the tears flow as I heard my neighbor give birth to her son. Why couldn’t that be me? I relented to a pain pill. Moments later the room swirled and I felt like I was going to throw up. But thankfully I didn’t. Instead I fell into a deep sleep.
6:00 a.m. I woke up symptom free with no contractions. I wanted to go home.
Several doctors and many tests later, I left with my appendix intact and a diagnosis of a ruptured ovarian cyst.
October 16, 2002
I rested, relatively pain-free.
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. Moments before the ambulance came, I recalled something about breathing into a bag when you are hyperventilating. My usually calm husband fluttered like a fly caught in a light bulb. He handed me a large paper grocery bag. If I could, I would have laughed at the comical gesture, but I didn’t.
A few hours later in the sterile setting of a labor and delivery room, I was equipped with oxygen, Pitocin to speed up my labor, and a blessed epidural. Miraculously, my symptoms stopped as quickly as they started and within a short time we were holding our beautiful baby boy weighing in at six pounds, seven ounces. We celebrated his only birthday on October 18 at 12:17 a.m.
October 18
1:00 a.m. While Michael was experiencing his first bath in the “big boys’” nursery, I suddenly spiked a high fever, but no one seemed particularly alarmed. Even though he arrived three weeks early, he was not considered a preemie in need of the NICU.
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
There is saying in medicine: When you hear hoofbeats in the forest, don’t go looking for zebras.
“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. Everyone advised against continuing my search, but I couldn’t stop. I knew a thunderous discovery was inevitably lurking in the shadows.
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, Dr. Z. called with the preliminary autopsy results. My husband and I leaned into the phone to hear her report with painstaking detail. After a few long minutes of listening to her tell us in excruciating detail about the perfect condition of Michael’s organs, I burst into her phone dissection. “You didn’t find anything?”
She cleared her throat. We could hear her rustling some papers, then she read directly from the report.
“The infant’s history of poor feeding may represent fatigue secondary to diffuse involvement of the heart and cardiac—”
“What are you saying?” I interrupted again.
“He died of myocarditis,” she said.
“Myo . . . what? Spell it for me.”
“M-y-o-c-a-r-d-i-t-i-s—myocarditis means the tissue around his heart was inflamed,” she said. “We can’t know for sure what the etiology is, but it is likely due to a virus. “
There was my answer. The dark cloud could not be contained. Finding out this critical piece—myocarditis—exploded the truth like a flash of lightning.
For months, I read every article on myocarditis that I could get my hands on from online sources and medical journals, as well as consulted with doctors, but I still didn’t know with certainly what caused the myocarditis. The critical piece was still missing.
One cold evening 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.
My daughter had it. When did she get it? I racked my brain trying to recall whether it was back in September or early October? I turned off the computer and paced back and forth in the room. What if that was when I got infected? And then . . . no! I couldn’t think . . . didn’t want to contemplate this horrible possibility. I was crying uncontrollably. Peter tried to comfort me.
“Nobody is at fault. Please don’t make it harder on yourself,” he said.
My thoughts gave me no peace— you have to know. You have to find out.
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— you have to know. You have to find out. I tossed and turned that night unable to sleep. Finally, I tiptoed out of bed and looked into my daughter’s room peacefully sleeping.
I went downstairs to the kitchen to make myself a cup of tea. There was no way to quell my nagging thoughts. If it was true that she’d brought the virus home from preschool, I swore I would never ever tell her.
I turned on the computer. A few clicks later I found a new post talking about twenty-three different types of the Coxsackie virus, but one in particular caught my attention—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 gripped the edge of the table. I read that the symptoms could come and go for weeks in adults. This is it! The symptoms I’d experienced before and after delivery had been real, not imagined—only my heart had had a fighting chance to overcome this virus; his heart had not.
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. I was strongly discouraged from having the testing done.
“Even if you find out, what are you going to do with this information? There is no cure. There is no vaccine. It can’t bring Michael back,” they said. It was the finality of knowing with certainty that my illness had caused Michael’s myocarditis that was too much for Peter. He didn’t want me to blame myself. I didn’t want him to blame me. It seemed that the scientific journey had come to an end.
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 was diagnosed with the Coxsackie virus.
Waves of emotions sent me reeling in total panic. When I regained my composure, I was determined with renewed gusto to get the blood test. We agreed not to test our daughter. Two weeks later, I had my answer. My hypothesis was right. I had elevated antibodies to the B strain of the Coxsackie virus.
One last piece of the puzzle would solidify my hypothesis without a doubt. The answer lay in the medical examiner’s office, where they were assessing if any antibodies to the Coxsackie virus were present in a piece of Michael’s tissue that they had preserved. I called weekly to see if they had test results. “We are working on it,” they said.
Many months passed before someone finally confessed that the last slide with Michael’s tissue specimen had been inexplicably misplaced—the evidence was lost. I felt defeated. It took some time, but I finally concluded that I didn’t need more proof. I knew the truth.
Step 6: Drawing Conclusions
Fall greeted us with the painful realization that time marched on without our Michael. Shortly after what would have been his first birthday, the director from my daughter’s preschool called to tell me that the Coxsackie virus was “going around.” Why did it feel like this virus was haunting us? I was numb with fear. I was seven months’ pregnant. Would lightning strike us twice?
My director was quick to call me back to tell me she had done some of her own research. “Did you know that the Coxsackie A strain or hand, foot, and mouth variety that goes on in the preschools will not harm a fetus and doesn’t mutate into the deadly B strain?” I didn’t know this, but after verifying this fact with our pediatrician, I drew in deep breaths of relief, praying that the last weeks of my pregnancy would pass quickly and safely. I would never know how I got such a rare form of this virus, but I did know that the son growing inside me now 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
I wanted to share this scientific odyssey with my doctors, hoping that knowing the “why” would spark a push in the medical community to isolate an antiviral medication, but my findings were dismissed as a conjecture at best. Enough time had past since we lost Michael. Interest in my case had waxed and waned.
More recently, I came across a series of findings that took my breath away. In 2002, there was no cure for myocarditis and only a handful of recorded neonatal deaths were linked to the B strain Coxsackie virus, but over the last few years more cases have been documented worldwide.
Only a year after Michael died, a new antiviral medication for Coxsackie virus came 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 from that magical cloud in the sky.
Avi Z. is a children’s book writer living in suburban Maryland currently working on her debut picture book, Patient Nation. She works as an educational consultant helping teachers assess the best in books for their classrooms.
Photo by Rachel Nuwer.