Long read: ‘When I got pregnant, I read about what could go wrong first’
Katherine Heiny was given just a 1% chance of carrying her baby to term
When I was five years old, my parents decided they could no longer watch the nightly news.
Or rather, they could no longer watch it if I was in earshot.
The coverage of the attack at the Munich Olympics had caused me to have such an intense fear of being killed by gorillas that I couldn’t sleep. No matter how many times my parents explained the difference between terrorist guerrillas and primate gorillas –and that there were no gorillas in Michigan anyway – I remained sleepless with worry late into the night for weeks. My parents eventually gave up and subscribed to the afternoon paper as well as the morning one.
The problem is not just that I am a champion worrier. It’s that I court worry – I seek it out, I invite it into my home, never remembering how hard it is too dislodge it from its comfortable chair by the fire.
I have memorised the beaches with dangerous riptides
I watch true-crime documentaries when I’m alone. I Google photos of black widow spider bites. I know the statistics about paracetamol overdoses. I have memorised the beaches with dangerous riptides. I have installed a carbon monoxide detector in every house I have ever lived in.
And when I got pregnant with my first child, I bought What to Expect When You’re Expecting – and the chapter titled What Can Go Wrong was the one I read first.
Retained placenta; umbilical cord prolapse; foetal arrhythmia; toxoplasmosis; preeclampsia; placental abruption; gestational diabetes; cytomegalovirus: I read about all of them, and learned the warning signs.
Perhaps to other women, these complications remain obscure, shadowy threats during pregnancy, but to me they were hard, clear, immediate dangers. When my obstetrician told me that mine was a perfectly normal pregnancy, the very first thing I said was: “Are you sure?”
And yet I was surprised when disaster struck. The things you worry about aren’t supposed to happen – that’s what worry does. It’s a preventative. And my disaster happened quickly, without fanfare or drama. One second, I was a nice, normal, happy pregnant married woman of 32, walking across my bedroom to my desk while my husband made lunch downstairs. And then the warm fluid gushed out of me, soaking my clothing and leaving a little wet spot on the pale green carpet.
I yanked down my jeans and pants, expecting blood, but there was only wetness. I knew it was very likely that my waters had broken, but I was barely 26 weeks pregnant. It didn’t seem possible. I stepped out of my clothes and went to the top of the stairs to call my husband. He stood on the landing with his hands all sticky from making hamburgers, and I told him what had happened.
We discussed it for a surprisingly long time. Was it really so bad? How much fluid? Maybe a cup? Was there blood? Was the baby still kicking? Should I call my doctor?
Yes, we decided.
I wrapped a towel around my waist and called my obstetrician. He was a man in his late 50s with a perpetual hangdog expression, and for this reason, my husband and I called him “Doggie B”. I loved Doggie B. Nothing ever surprised him, nothing ever alarmed him. I could not picture him giving me bad news, and because I could not imagine it, I felt it wouldn’t happen.
“I want you to meet me at the hospital,” Doggie B said. “Go to the maternity ward. And I want you at Georgetown Hospital where they have the neonatal unit.”
I put on fresh pants and jeans and my husband and I drove to the hospital. It was January 29th, 2000, and an ice storm was just beginning. Something happened to me on the way to the hospital: my mind split in two. One half was convinced that that this trip was unnecessary, that, of course, my water hadn’t broken, that I was just fine. The other half was just as sure my waters had broken and that I would almost certainly go into labour and give birth to a baby too young to live. The two halves of my mind rotated inside my head like the lights of a lighthouse, the worried part flashing and then disappearing, replaced by the calm one.
* * * * *
At the hospital, a doctor who looked just like Andie MacDowell performed a pelvic exam and took vaginal swabs. A nitrate test was done on one of the swabs for the presence of amniotic fluid. (Its presence would have meant membranes containing the baby had ruptured – three months prematurely – and would most likely cause me to go, disastrously, into labour.) The other swab was for sent off to the lab to check for the presence of arborisation, otherwise known as ferning, because amniotic fluid produces a delicate, leafy pattern under the microscope. Both tests were negative, although they were running a repeat just in case. I began to feel a little ridiculous.
The Andie MacDowell doctor told us that there was no evidence that I was leaking amniotic fluid, but that they were going to admit me, she said, “on the strength of my story”.
The strength of my story! I was appalled. I’m a writer – of course I told a strong story. Maybe I didn’t need to be here, I told my husband, as nurses wheeled my gurney into a private room. Maybe I should just tell an equally strong story about how nothing was wrong and go home.
The doctor came back. “I just saw the ferns,” she said. “You have definitely ruptured. We’ll try to delay labour as long as possible.”
“Three months?” I asked.
“Yes, that’s the hope,” she said.
I wouldn’t have been so scared if it weren’t for the look on her face.
Nurses came into my room and began to bustle around me while the doctor explained that my condition was called preterm premature rupture of membranes, or pPROM. The two most dangerous (and most common) complications of pPROM are extreme pre-term birth and chorioamnionitis, a bacterial infection of the foetal membranes. Both are devastating for the foetus. I reached for my husband’s hand.
I thought it was some long German word that meant “head below feet on the side of a mountain”
The nurses put me “in Trendelenburg”, meaning my hospital bed was tilted so that my head was 20 degrees lower than my feet. (I thought it was some long German word that meant “head below feet on the side of a mountain”.) A nurse wrapped a foetal monitor to my belly with a thick strap, explaining that it could be read from the nurses’ station, and they would know immediately if I began having contractions.
Another nurse slid a pair of puffy compression leggings on to my legs. They inflated and deflated every other minute with a whooshing sound. It was like having Darth Vader breathing at my bedside. I was told to lie on my side in order not to put pressure on my vena cava, which would lower the baby’s oxygen supply. Yet another nurse poked a needle into my arm to start a line for intravenous antibiotics.
The doctor gave me a shot of steroids to help develop the baby’s lungs, in case the baby would shortly be needing those lungs to breathe. “Aren’t steroids counter-indicated in pregnancy?” I asked.
“Yes, but it’s more dangerous to go without,” she said.
Doggie B called the hospital to say that he couldn’t make it in because of the ice storm. In his absence, the doctor ordered the nurses to give me a shot of terbutaline, a medication that can delay preterm labour for up to 48 hours.
“Please,” I begged. “I don’t want any more shots. I’m not in labour. This could be so bad for the baby.”
From the moment I learned I was pregnant, I had divided the world into things that were okay for the baby, and things that were bad for the baby. The first group included rice, poached chicken and yoga, The second group included alcohol, secondhand smoke, deli meat, smoked seafood, raw eggs, soft cheese, pâté, caffeine, unwashed vegetables, diet soda, eggnog, x-rays, aspirin, ibuprofen, antihistamines, nasal decongestants, cough syrup, librium, valium, sleeping pills, castor oil, vitamin A supplements, paint fumes, insect repellent, acupuncture, cats, hair dye, altitude, saunas, reptiles, tick bites, microwaves, electric blankets, rollercoasters, bikini waxes, stiletto heels, hot dogs and tap water.
I trusted no one but myself and Doggie B to categorise items, and certainly not a doctor I had met 10 minutes before.
They gave me the terbutaline anyway. It made me dizzy and cold, though it makes most people hot. They piled more blankets on top of me. My hands shook uncontrollably.
The neonatologist came to talk to us. He had thick glasses and he talked in percentages. It was clear that he was not interested in offering comfort; he was there to convey information. He told us that for babies born at 26 weeks, the survival rate is 50 per cent. Of the surviving half, one-third had major disabilities, and are likely to be dependent on caregivers for ever. It was common for them to have breathing problems, cardiac disorders, brain bleeds, cerebral palsy. Brain damage, deafness, blindness. Another third had more moderate disabilities: spastic muscles, significant hearing loss, impaired vision without blindness. The final third (the best we could hope for, apparently) had milder learning disabilities, anemia and digestive complications.
I watched him dispassionately, not really listening. He was so stereotypically nerdy that I couldn’t get over it. Why was he telling us all this scary shit anyway? I wasn’t going to go into labour. The baby wasn’t going to be born yet. Why couldn’t anyone understand that?
* * * * *
The first night was longer than I would have believed possible. Visiting hours ended and the nurses chased my husband out. He drove home on streets that crackled and shifted with ice. I was not allowed to stand, or even sit. I was served a dinner that I was too nervous to eat. And I learned about bedpans. Peeing into something the size and shape of a casserole dish while lying in bed with your head angled toward the floor is messy and awkward.
But that is not the worst thing about bedpans. The worst thing is the other people involved. Having to ask someone to bring you a bedpan, having to make conversation with that person while you use it, having to apologise because your aim is a little off and now there’s a wet spot on the sheets, having to ask that person to wipe you, having to ask her to wipe you again because you still feel damp and sticky, having to thank the person, and you do really thank her, you are so grateful, it’s just that two hours ago you were an upright person with a little dignity, and now you’re not.
The hospital lowered the lights in the hall, just like on a transatlantic flight. Nurses went by on squeaky shoes. I lay on my side and gripped the metal railing of my bed. The lighthouse in my mind revolved, and for one instant the room was flooded with cold, bright, white fear for the baby. Then it was gone. Certainty that the baby would not be born early stole over me, and I gathered that certainty close. I lay awake and watched the sleet falling outside my window. It occurred to me that I could not see the ground.
Doggie B came to see me the next day.
“Can you believe this?” I said to him. “Me, your most paranoid patient!”
He didn’t bother to deny that I was his most paranoid patient. When he spoke, his voice was mild and unconcerned. He said that I would remain on bed rest, and unless infection forced us to act sooner, he would deliver the baby at 33 weeks, when the greatest risk was over.
I wanted to have the baby at 40 weeks, like everyone else
I didn’t want to have the baby at 33 weeks. I wanted to have the baby at 40 weeks, like everyone else. I knew the risks. But I had also been told the risks of preterm infection: a baby born with brain damage, cardiac defects, limb abnormalities, microcephaly, hydrocephalus, paralysis, bone lesions, eye lesions – or possibly no live baby at all. I refused to weigh the risks; I would simply not go into labour, nor would I develop an infection. That was all there was to it.
I frowned at Doggie B. “Why 33 weeks? Why not go to May 10th?” That was my due date.
He shrugged. “Okay, May 10th.”
He was a much better liar than the Andie MacDowell doctor.
After Doggie B left, the nerdy neonatology doctor came to my room again. He wanted me to go down to the neonatal intensive care unit (NICU). “You need to see what a preemie looks like,” he said, pushing his glasses up his nose. “You need to prepare yourself.”
The Andie MacDowell doctor was there, too. “A three-pound baby takes some getting used to,” she said. “You don’t want to see one for the first time in the delivery room.”
To both of them, I turned a deaf ear and a sullen face. I was not going into labour. I was not going to go to the NICU and no one could make me. Conversation was cut short when another nurse came in and told me that my monitor had showed slight “disturbances”, and gave me another shot of terbutaline.
“I can’t believe terbutaline makes you cold,” this nurse said as she took blankets from the blanket-warmer and I shivered beneath them. Out in the hall I heard her say to someone: “That one is so contrary.”
I could see – remotely – that all these doctors and nurses knew something I didn’t. I found out much later that what they knew were the odds. Fifty per cent of women with pPROM go into labour within 48 hours, and 95 per cent deliver within one week of rupture. Four of the remaining 5 per cent deliver within two weeks. One percent of women with pPROM experience spontaneous resealment of the membranes and go on to carry the baby to term.
One per cent.
* * * * *
“Do you knit or crochet?” one of the nurses asked me early on. “Lots of bed rest patients find that helps them pass the time.” “No, I read and I write,” I answered, pretentiously. And untruthfully, because I have always watched a great deal of TV.
I couldn’t write because I couldn’t sit up. I also couldn’t write because if I focused too much on my situation, the lighthouse in my mind would revolve and the worried, scared part of me would rush out, gibbering with alarm, baying, screaming, howling that the baby was going to be born too soon, the baby was coming now, the baby was going to die. How could I write with that going on?
I had a headache from being in Trendelenburg. I couldn’t remember what it was like to look someone in the eye, so long had I now spent gazing up at everyone from thigh-level. When I ate, it was one wobbly, precarious forkful at time. After a while, I just gave up and if I couldn’t eat it with my fingers, I didn’t eat at all. I drank through a straw, until everything tasted the same: like the plastic of the straws.
I must have read dozens of books while I was in hospital, and I can only remember one of them
I couldn’t write, so instead I read. Constantly. Ceaselessly. I had to hold the book open in front of me sideways, like someone gripping a large steering wheel. My husband brought me books and I stacked them on my overbed table, and as I read each book, I held the next book in my free hand, with my finger marking the start of the first chapter so that as soon I finished one book, I could immediately start another. I must have read dozens of books while I was in hospital, and I can only remember one of them.
Only one book held my interest. I told my husband exactly where to find it on the bookshelf near my desk and he brought it to me:
Steven Callahan’s Adrift, a memoir of the 76 days in 1982 during which Callahan had survived in an inflatable life raft after his sailboat sank. I had fallen in love with the book when it was first published, in 1986. It seems like a strange choice of reading for a teenage girl, especially one as studious and non-athletic and seasickness-prone as I was. But I have always been drawn to survival stories: they dovetail nicely with my chronic fear of disasters.
Callahan spent more than two months in a rubber raft in the middle of the Atlantic, spearing fish to eat raw, using solar stills to distil water, and making endless, desperate makeshift repairs to his patched and leaking vessel. I had read Adrift many times over the years, but now I read it again, and was inspired by his suffering and ingenuity in a new way. I was in a hospital bed where nurses brought me meals three times a day, and I slept in a bed on clean sheets and was in no danger of drowning. I could do this. I could.
* * * * *
You don’t sleep in hospital.
You can’t sleep. Too many people coming and going. A nurse comes every four hours to check your vitals: temperature, pulse rate, blood pressure, baby’s heartbeat. Another nurse comes in every two hours to make sure you are doing your kick-counts. Meals come three times a day, plus a night-time snack for pregnant women, which means four times someone comes into your room to deliver a meal, and four more times someone comes back to collect the tray. A nurse comes every time you need to use the bedpan. An orderly comes every morning to take you for an ultrasound. Your obstetrician comes by every day to check on you, and you don’t want to miss his visit, because he is the only one who tells you what you want to hear – no, there’s no sign of infection; yes, I’m sure you’ll carry to term. The hospital chaplain stops by once a day. She was a mousy woman with a perpetually scared expression. It’s not a good look on a hospital chaplain.
So that’s more than 30 people coming to your room and interrupting your sleep. And then there’s the physical part of it. If you are confined to bed, after you lie on your side for a few days, it begins to feel as if your hip sockets are lined with metal shavings, as if the sheets are covered with shattered glass. Before long, red, rough, scaly patches the size of saucers appear on your hips and your shoulders – the beginnings of bedsores. The compression leggings chafe your thighs.
You forget how to sleep.
Worry used to be inside you, but now you are inside it
The line between waking and sleeping used to be as clear and sharp as the line down the middle of a road, but after two weeks, that line has blurred and is almost invisible. You stagger back and forth across it like a shambling drunk, until there is no more sleeping and waking; there is just this dim, dull, soupy consciousness. Your reality shrivels down into one long, hazy, beige-tiled tunnel. You used to worry, but it has gone beyond that now. Worry used to be inside you, but now you are inside it. Worry is a dome that has descended over you and trapped you. This is your life now. This is your world.
Every day about 10am, an orderly arrived with a gurney and I carefully scooted on to it and then the orderly pushed the gurney through the hospital halls to the prenatal department.
Two weeks had gone by, and I hadn’t gone into labour. This seemed to surprise everyone but me and Doggie B, who began, cautiously, to speak of resealment. The nerdy doctor came by and gave me a whole bunch of new statistics about what the baby’s chances were at 28 weeks, at 30 weeks. He didn’t go beyond 30 weeks, though. They removed my IV. Everyone talked about something called “BP” as though they were speaking of the Rapture. (“Bathroom Privileges.”) The atmosphere in my room became positively springlike, despite the snow outside.
Doggie B said the first step would be for me to get up and take a shower. A shower! Nothing could have been more tempting. He gave me a date. Now it was something to look forward to. I had my husband bring in a bottle of my favourite shampoo and a bar of coconut soap. The day finally came. A nurse removed my circulation leggings. I sat up slowly and swung my feet to the floor. The nurse took my arm and helped me to stand. I stood there, swaying. Amniotic fluid poured out of me and splashed to the floor. The nurse let go of my arm in surprise. I lay back down and turned my face to the wall.
It took me a while to regain my strange equilibrium, especially considering that the doctors now suspected I had been leaking continuously since the first rupture. Rupture of the membranes is considered “prolonged” (and therefore dangerous) when more than 24 hours passes between the rupture and the onset of labour. My waters had broken more than 300 hours ago. The risk of sepsis was very high.
But still, two days – maybe three – and the stubbornly optimistic side of my personality fought its way to the forefront and re-planted its battle flag. The Andie McDowell doctor wrote in my chart: “Patient needs to understand that resealment is highly unlikely at this time and that preterm birth is almost a certainty.”
Yeah, well, that’s what she thought. This baby was not coming early. I simply wouldn’t allow it.
Another week in bed went by.
Every once in a while, they had me stand up, and every time I leaked amniotic fluid. But still I didn’t go into labour. Nor did I have a fever or abdominal pain, the two greatest indicators of infection. Life as I now knew it went on.
After I had been on bed rest in the hospital for 25 days, there came a time when I stood up and no fluid gushed out of me to splatter on the floor. The nurse and I looked at each other in amazement. “Go take a shower, quick!” she said. “I’ll change the sheets on your bed.”
It was not the slow, luxurious shower I had dreamed of, but I can tell you this: it was pretty fucking nice. They didn’t allow me out of bed again that day, but I was finally taken out of Trendelenburg. I stood up the next day and again there was no leak. I took another shower.
When Doggie B came to see me next, I was sitting in a chair to greet him, radiant, both my pride and my belly enormous.
I had done it. I had resealed.
I was in the 1 per cent.
* * * * *
Doggie B wanted to send me home. I fought him.
I had been in the hospital for almost a month at this point, and I was pretty much institutionalised. Go home? Without the foetal monitor? With no nurses to listen for the baby’s heartbeat every four hours? No daily ultrasound? Uh-uh. He was crazy if he thought I could handle that much responsibility. I told him that I needed to be in the hospital near the NICU. I pointed to my chart where it said “Severe Risk Pregnancy” in big scary letters. Doggie B stood firm. He discharged me and my husband drove me home.
Steven Callahan writes of seeing the first food after his rescue – a cake of chipped coconut topped with a dot of red sugar – and how he looked at it in wonder and thought: “Red!” That was exactly how I felt when I saw my house again. Green! Blue! Lilac! My hospital room had been unrelentingly beige.
I counted constantly how often the baby kicked, and took my temperature five times a day
I was still on almost total bed rest, allowed up for 15 minutes twice a day. A shower in the morning and dinner at night. Out of the hospital, the lighthouse in my mind revolved faster and faster, unchecked by the nurses’ reassurance. I counted constantly how often the baby kicked, and took my temperature five times a day. The amniotic sac had resealed, but the rupture had been extremely prolonged, greatly increasing the chances of an infection reaching the baby. Even feeling the baby’s movements could not quell my worry. Doggie B’s receptionist learned to put me straight through to him when I called.
Time ground slowly by. My husband brought me breakfast in the morning before he left for work. Our housekeeper brought me lunch. My husband brought me dinner and we ate at the card table he had set up in the corner of our bedroom. Then I crawled back into bed and worried until I fell asleep, woke up, and started another day. That was my routine, and I never varied from it. I don’t mean I never varied from it significantly; I mean I never varied from it at all.
Thirty-one weeks. Thirty-two weeks. Thirty-three.
Still I didn’t go into labour. I lay in bed and stroked my abdomen with my fingertips.
Thirty-four weeks. Thirty-five.
March ended and April began. A blizzard of cherry blossoms replaced the snow outside my bedroom window.
Thirty-six weeks. Thirty-seven weeks.
I no longer watched TV or pretended to read books. I knew nothing but my belly and the endless waiting. Time had softened and stretched like taffy, pulling itself into long, gooey ribbons.
Thirty-eight weeks. Thirty-nine.
I was certain that the baby would be born on April 21st, the same day Steven Callahan was rescued. But April 21st came and went. And then one day I got up to take my morning shower and felt the slightest trickle of fluid run down my leg. My waters had broken for the last time.
* * * * *
Our son was born 12 hours later at Sibley Hospital in Washington DC. We named him Angus. And so my life changed again in another minute, another second. The two halves of my mind fused back together. I went from severe-risk pregnancy to healthy new mother. I was totally unprepared. For so long the goal had been to stay pregnant – I had almost forgotten that a baby was the end result. I knew nothing about newborns, nothing about breastfeeding or burping or vaccinations. The nurses had to show me everything. One them said, in a careful voice: “I’ve heard about you, I think.” I could tell that whatever she had heard was, at best, a mixed review. “Didn’t you rupture very early and do a lot of bed rest over at Georgetown?”
I felt a stubborn thump of pride. “Thirty days at Georgetown. Eighty-eight days altogether.”
“Wow,” she said. “I bet you never want to see a hospital again.”
Very few experiences transform your view of the world and yourself, but bed rest did that for me
I didn’t know how to tell her that almost the opposite was true. It wasn’t just that I knew about hospitals now, and knew I could survive a long stay in one. I was a different person from the one who had been admitted all those weeks and months ago: a tried person, a changed person. Very few experiences transform your view of the world and yourself, but bed rest did that for me. I had beaten nearly unthinkable odds. All the things I have always meant to fix about myself but had never got around to – my stubbornness, my hypochondria, my inflexible nature – had turned out not to need fixing. Had, in fact, turned out to be survival skills.
Twenty-four hours went by, and I cried because I never wanted Angus to get any older. The impossible had happened: time had speeded up.
Six months later, I arranged to speak to Steven Callahan by phone. I told him how much his book had meant to me, how much he had inspired me. We discovered that we had both been obsessed with numbers, with calculating and re-calculating the days of our progress. I told him that my ordeal had altered me in some fundamental way, that sometimes I even missed the mind-bending, terrifying force of it. He agreed.
“Sometimes I feel a loss,” he said, “in terms of the fact that few if any experiences I will ever have again can equal the intensity and importance of that one. You try to mine the precious elements of the experience, but they slip away from you, and that’s another loss. You try to appreciate this enormous gift you’ve been given, but eventually you just get on with it.”
The precious elements of my experience were fading, too. I took my bathroom privileges for granted now. I slept on my back again. I went for walks. I worried about traffic jams and deadlines and love handles, just like a normal person. I got on with it.
Angus is 17 now, taller than me, taller than my husband. He has the beginnings of a moustache and a voice as deep as James Earl Jones’s. He knows how to do laundry, and make spaghetti. He can take the Metro by himself, and he learned to drive this summer. It’s possible he watches porn on the internet. (It’s extremely possible.) I have new fears and worries, about teenagers. The bright, icy terror of the hospital is behind me, but it has taken a long time.
One day, when Angus was about three years old, I cleaned out a closet and unexpectedly found the plastic water pitcher that had been by my hospital bed. In an instant, the lighthouse in my head revolved, and everything went white and cold. I was certain that the baby was in danger – so certain that I had to run to the bathroom and vomit.
I don’t know why this surprised me, or why I thought I would be different, immune to the after-effects of my ordeal.
All survivors have scars.