My Patient Rights can help guide you in resolving issues so you can get the health care you deserve.
By Elizabeth Allison
October 16, 2020
Coiled on yet another floor, I yearned for bed but knew better. Sure enough, my stomach lurched and rumbled like a washing machine knocking about soiled sneakers. I bolted to my knees, clutched the sides of the toilet and retched while Jeff, my husband, rubbed my arched spine. “Sorry. Sucks to be miserable on our anniversary.”
“I’m not miserable,” I lied. To feel anything but gratitude seemed sinful.
After six years of trying, two brutal miscarriages and one round of IVF, we were expecting again. Twins. Perhaps the universe was trying to atone. At my eight-week appointment I had described my frequent vomiting to our fertility doctor, but an ultrasound indicated my pregnancy was normal. I could “graduate” from weekly treks to the center to monthly visits with an OB-GYN. Encouraged, Jeff and I left town the next day, but by night two of our wedding anniversary road trip, the vomiting grew more violent and a creeping fear that I would again miscarry consumed me.
I felt like a malfunctioning vessel. I did not resemble any pregnant woman I had known. No baby bump. No cravings. I was not “glowing.” I was not eating for three. Or even one. I certainly was not planning. No discussion of names this time. No designs for a nursery. I could not bear more disappointment. Like a dim fog, dread shadowed me through every room where I lay, too panicky to sleep, and into every restroom where I knelt, terrified I was starving my unborn babies.
Once home, I phoned my new OB-GYN, whom I had yet to meet, with my concerns. The call was brief. “It’ll get better.” It didn’t. That night I filled a basin with puke and bile. Jeff quickly cleaned the sink and grabbed his car keys. A new routine was born.
I traipsed through the sliding ER doors, was hooked up to an IV, and then I implored anyone with a badge to listen to me. “Something’s wrong.” Tired personnel offered different versions of “Some women get it bad.” I waited another hour for the attending doctor’s three-minute visit, my last chance to secure help. “I’ve lost 10 pounds. Shouldn’t I be gaining weight?” I asked. He mustered something between a grin and a smirk and responded, “It will all be worth it.” A half-hearted answer to a question I never asked. How selfish did he think I was? I understood parenthood was gratifying. I was in his hospital to preserve my chance at it. I said nothing, though. No one seemed to think my condition was unusual. Maybe I really was the overwrought woman they took me for. Maybe the worst was over.
Most of the day I hunkered down in the bedroom with the door closed, as any scent that wafted through our open-concept house made me sick. Redundancy was broken by a visit with my new OB-GYN who, though sympathetic, deemed my pregnancy normal, and with two more trips to the ER. Both times I was placated with a saline drip, advised to sip peppermint tea, then discharged.
One night, after a nasty bout of sickness, I slipped out of bed to brush my teeth, the riskiest of my evening routines. Most times the toothpaste made me retch. When I stood, a fuzzy noise filled my ears. Lately I had grown muddleheaded, so I tried to quiet my breathing and focus. The room was shrinking. No, I was falling. Static pierced my ears as a blackness descended. I awoke on the floor.
En route to the hospital I resolved to be heard this time. I addressed literally every person who entered my curtained cubicle. “I’m carrying twins, and I’m 95 pounds. Does that sound normal to you?” I asked. No one answered. To any person in scrubs I said, “I’m carrying twins, and I passed out.” The response was, “dizziness is common during pregnancy. Try getting up slowly.”
Later I recounted to the ER doctor how I had hit the hardwood floor. I waited for an expression of alarm, of unease, of something that told me I had a right to feel scared. Instead, he clumsily patted my rumpled hair and remarked, “This, too, shall pass.” I wanted to slap his face. Instead, I trudged to the dark parking lot with the dignity of a pestering cur.
We drove home in the silence of disappointment. I had lain in a massive building bursting with people trained to serve, and no one had heard me. I had entered a terrified advocate for two lives. Still, I had not raised my voice, demanded hospital admission or questioned my treatment ― all to avoid being labeled “hysterical.” I had not cried so that I might appear strong and, thus, more credible. I had swallowed all my fear and anger so that I would be seen as a “rational woman” and might be believed. Perhaps I had gone too far ― hadn’t seemed scared enough. Perhaps in the absence of emotion I had become nothing. It was starting to feel like a no-win situation.
Two days later, I had trouble walking. Away on business, Jeff arranged for help. My friend Pam took the a.m. shift, armed with protein-powder-packed Jell-O. I threw it up. I vomited blood and bile six more times into plastic grocery bags I now carried. “This is so wrong,” Pam remarked. I phoned my doctor. The staff sounded unconcerned, but I refused to hang up. “I’m going to keep calling until I get a new appointment,” I said. They moved me up a week, and I slunk back to the sofa. An hour after Pam left, my parents rang the front bell. They never made it past the foyer, where my dad stood slack-jawed. “This isn’t right,” he said. Minutes later I was in the backseat of his car clutching my bag of puke.
Same ER. Different staff. Same condescension. “Oh, it’ll be a distant memory one day,” I was told. I spoke slowly, “But we need help now. How are babies okay without nutrition? Show me.” At a little after midnight, a tech rolled me into a deserted hall to perform an ultrasound. I tried to study her face. She remained steely, an assembly line worker checking for faulty widgets. Finally, she tapped the screen. “Everything looks fine,” she said. “No. No, it’s not,” I said as my fist struck the padded gurney.
I awoke to a foggy outline scanning a clipboard. Shift change. “Elizabeth?” He sounded young. “You are not well.” My heart flared, and a hardness formed in my throat. I pushed my weight onto my elbows and sat up. He had seen me; I wanted to see him. An attentive face looked right at me. “I’m admitting you. And I’m calling in someone who can help,” he said. I choked out an anemic “Thank you” before he yanked on the curtain and disappeared into a flutter of white mesh.
Two days later, I awoke to a youthful doctor adjusting my blankets. She turned and smiled. “We’re going to help you, Elizabeth. I’m very experienced with this.”
“This?” I asked.
“Hyperemesis gravidarum.” She described the condition as typified by severe nausea, vomiting and weight loss and possible kidney and electrolyte complications.
In perverse reverence I repeated, “Hyperemesis gravidarum.” I was grateful for a name.
She also explained that fewer than 3% of pregnant women experience the disorder and dubbed me “the perfect candidate” for it, as women who undergo fertility treatment and carry multiples are more susceptible. She lamented that there is no cure but offered options for relief.
I left the hospital attached to a peripherally inserted central catheter (PICC) line. For eight weeks, no solids or fluids entered my mouth. Liquid nutrients nourished me, intravenous meds quelled much of the nausea and a home nurse monitored my vitals. I remained too weak to walk far, stand for long or drive. I officially resigned from my teaching job from which I had been on sick leave since the second day of school.
I left home only for doctor visits. On the afternoon of one such appointment, Jeff had some important work calls, so I imposed on my mom to drive me. I invited her to join me in the exam room. “It’s just an ultrasound.” I was a few weeks into my second trimester now and more confident that the worst was over. She was there when the technician discovered a pool of blood encircling the head of one of the twins.
The doctor was quickly summoned, and he confirmed my greatest fear: the baby was dead, maybe strangled by his own umbilical cord. Or maybe not. “We don’t really know,” he said. I asked if hyperemesis gravidarum was a factor and was told it was not. Or probably not. “We don’t really know.”
The doctor explained that the twins had not shared an amniotic sac, so the surviving twin was not in imminent danger. Five minutes later I left with a dead baby inside me, no definitive answers to my questions and a grief beyond measure. The drive home was silent. When my mom pulled up to the house, small tears filled her eyes. “Don’t worry about me, mom, OK? I’ll be fine, OK?” I was an expert now at choking down emotion.
As broken as I felt, two things helped stave off complete depression: visits from loved ones and the droning of my IV pump. For so long I had felt unsettled, as nothing was being done to rectify my problem. I was told over and over there was no problem. The hum of the PICC line said otherwise. Each time it pumped meds and nutrients into me, it vindicated my instincts, my entreaties. Each pump lessened the nausea and vomiting. Each pump was a step closer to a healthy boy.
I began eating gradually, the PICC line was removed, and my baby, Thomas, emerged into the world a perfect specimen. While I soaked in my son’s flawless face, the doctors removed his twin, a triumphant moment tinged with loss. I wondered if hyperemesis gravidarum had robbed Thomas of a confidant, a best friend. Then I kissed my boy in love and commiseration.
I left the hospital determined to give Thomas a sibling. My fertility doctor made it clear, though, that hyperemesis gravidarum would likely return if I became pregnant again. I could not conceive of being that sick and caring for Thomas. That night I began researching having our frozen embryos transferred into a surrogate. Eighteen months later we were in Texas when a young woman gave birth to our son, Devin.
Devin’s complex birth story has been relayed to him countless times, and it always begins with hyperemesis gravidarum. Though he cannot pronounce the word, Devin understands its place in his story.
“You put me in another lady so we wouldn’t get sick.”
“When Thomas was in your belly you were really sick, mama.”
“There was no medicine.”
“There was. It just took a long time to get it.”
“I don’t know.”
I do not know why it took so long for someone to address my worries, but it has been well documented that, compared to men, women suffer disadvantages when seeking medical help. Their complaints are less likely to be comprehensively studied, they are less likely to be prescribed certain medications and many female health maladies have not been as extensively researched. We must protect ourselves, then, by becoming well informed, countering skepticism, asking questions and seeking other opinions. We must trust our instincts in the face of denial. We must teach our children, especially our sons, to acknowledge the unfamiliar so that others will not have to struggle to be heard.
Elizabeth Allison is a writer and former high school teacher. She recently published a short children’s book, “Many Miles to Walk,” for her younger son to explain his birth via surrogate. Her articles can be found on her website: https://thewriteprofile.com.
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