by Josie Glausiusz
When moms-to-be ask, “What should I pack to bring to the hospital when I go into labor?” I often reply, as a joke, “how about a wet swimsuit?” That is what I carried in my backpack to Roosevelt Hospital in New York City on a cold Sunday in late December, 2010. I was 30 weeks pregnant with girl-boy twins, and on that Sunday afternoon I had gone for my usual four-times-a-week swim. But when I emerged from the pool I saw bright lights dancing in front of my eyes. I had a headache, and I felt ill. I called my husband, who advised me to call my ob-gyn, who advised me to go straight to the hospital: “Do not pass Go; do not collect $200,” as it were.
When we arrived at the hospital, a security guard asked, “Is it time?” “No,” we laughed. “We’re just here for a check-up.” But the check-up turned into a hospital admission, with regular blood pressure checks and fetal heart-rate monitoring. One test showed an unequivocal sign of preeclampsia: protein in the urine.
In my article in Scientific American, I describe how researchers at Tel Aviv University and at King’s College London are developing protocols and tests to detect preeclampsia in the first trimester of pregnancy, when it can be treated and prevented with a simple drug: aspirin. In my case, and like most mothers who develop this potentially fatal disorder of pregnancy, the signs of preeclampsia — high blood pressure, visual disturbances, protein in the urine — came on suddenly and unexpectedly in the third trimester, when there was little that could be done beyond constant monitoring and then delivery of my babies.
My Scientific American article was inspired by my own experience of delivering twins prematurely, at 31 weeks’ gestation. My experience, and my reporting of this Scientific American story, convinced me of the need to improve prediction and prevention of preeclampsia, not just to save the lives of premature babies but to protect the lives of mothers as well — and their physical and mental health. Of the 10 million pregnant women globally who develop preeclampsia every year, about 76,000 die. About half a million babies die each year as a result of maternal preeclampsia, including 10,500 in the United States.
In my case, I also endured some lingering, long-term after-effects the trauma of my babies’ early birth — a sort of PTSD that translated into near-constant anxiety that I would lose my children. Some parenting magazines and health sites have addressed the physical after-effects of preeclampsia — including long-lasting hypertension and a higher risk of heart disease and diabetes, and also the rare incidence of postpartum preeclampsia, which can occur within 48 hours of childbirth and even up to six weeks later. While some women have publicly discussed flashbacks and feelings of guilt that they themselves were the “cause” of their own preeclampsia, there seems to be little psychological research on the long-term emotional impact of preeclampsia on mothers of premature children. Even now — when my happy, healthy children are ten years old — I still suffer glimmers of my early terrors.
During my stay at Roosevelt Hospital, my blood pressure was checked, on average, every two hours, with regular ultrasounds and fetal heart-beat monitoring. One week after my admission, I went into labor and my babies were delivered by emergency c-section. I had barely time to register their birth before they were whipped away to the Neonatal Intensive Care Unit (NICU) and I was trundled into the recovery room, where I spent the next 26 hours, unconscious or barely conscious, drugged up with anti-seizure medication and painkillers. By the time I saw my children, in their incubators, more than a day-and-a-half had passed since their birth.
When I saw my daughter, I cried. I had never seen such a tiny baby. She weighed 1.1 kilograms: slightly more than the weight of a bag of flour. She was about the size of a bag of flour, too. My son, who was larger at 1.75 kilograms, was breathing with the aid of CPAP (Continuous Positive Airway Pressure). Both babies were trussed up, it seemed, with tubes and wires monitoring their breathing and heart-beats. In the first few days of their lives, they were fed through a feeding tube leading into the stump of their umbilical cords; when he was three weeks old, I learned to breast-feed my son, an experience I wrote about in an essay titled, “Persevere and You Will Conquer,” and later my daughter, after she had recovered from Stage 1 NEC(necrotizing enterocolitis, a potentially-fatal intestinal infection common among preemies).
Both babies experienced repeated episodes of bradycardia, a slowing of the heart-beat common among preemies, and spent about eight weeks in the NICU before being discharged. (The hospital required seven “brady-free” days before discharge.) I spent every day for eight weeks in the NICU, feeding, soothing and singing to my babies (as did my husband Larry, for hours every day), holding them in a skin-to-skin snuggle called kangaroo care, and also pumping breast-milk, changing diapers, and sometimes napping myself. I made friends with other mothers in the NICU, and we still keep in touch today.
The nurses and doctors were kindness personified, and supportive in every way. One nurse, whom I remember with great affection, taught me how to breast-feed, and encouraged me daily with pep-talks, citing her the motto of her high school in Jamaica, “Persevere and You Will Conquer,” which I still quote to my kids. I also remember the words of another nurse, words that I did not appreciate at the time: “The NICU is like a country club. The hard work will begin when your babies go home.”
Her words, in retrospect, proved true. The NICU was like a cocoon: constant nursing care, a network of other moms, even laughter in the lactation room as we passed little plastic collecting bottles through the curtains to each other. At home, I switched all day and all night between one baby and another, feeding and changing and soothing. (Eventually, I learned to breast-feed them together, one on each breast.) I forgot what day of the week or month it was. I sobbed from exhaustion, and I began to understand why sleep deprivation is used as a form of torture.
Although I was happy to see my babies smiling and snuggling at home, I was also terrified. I was scared that, now that they were detached from their breathing and heart-monitors, they would stop breathing and I would not know until it was too late. I imagined, time and again, peering over their crib and seeing a blue baby. Would I remember how to do CPR? I pictured myself screaming, “Larry, call 911!” What if one of them choked on their milk? What if they rolled over onto their tummies and could not breathe? I anxiously monitored the temperature of their bedroom, as I had read that overheating was a risk factor for SIDS. I crept into their room night after night, in the middle of the night, to check that they were breathing. When I did sleep, I dreamed that I had to race in and rescue them from a fire. As they grew older and began to crawl and then walk, I worried every time I lost sight of them in the playground. I still remember my panic when one of my children hid in the bushes at the park, for a lark. She thought it was hilarious; I was afraid I would never see her again.
It’s well-known that prematurity can cause long-term developmental delays in children, such as learning disabilities, cerebral palsy, and vision and hearing disorders. Our kids are happy, healthy, vivacious children, with no obvious permanent effects of their prematurity. But sometimes, when I see my kids achieve some milestone — my daughter swinging fearlessly from the monkey bars, or drawing an astoundingly detailed picture; my kids playing for hours together at some complicated self-created game, my son reciting Lewis Carroll’s “Jabberwocky” from memory — I have flashbacks to the moment when I first saw them in their incubators. I can still see them clearly: tiny, helpless, wired up to their beeping monitors, and I can sense that fear all over again.
Perhaps I will always have those flashbacks and those fears. But alongside the fears come the boundless love I have felt since the very first days of their lives, and gratitude as well. Gratitude for these amazing children, gratitude to my husband, an amazing Abba, gratitude to the nurses and doctors who delivered my children and took such fantastic care of my kids, gratitude to modern medicine, which helped bring my children into the world and helped them survive, gratitude for my children’s love and for my chance at motherhood. As I tell my children all the time, “You are my treasures.”
Read Josie’s Scientific American article: “A Simple Blood Test Could Detect a Deadly Disorder in Pregnant Women.”
Support is just a click away. Find virtual support groups, private Facebook communities, podcasts and peer support for NICU families today.
About Josie Glausiusz
Josie Glausiusz is a journalist in Israel who writes about science and the environment for magazines, including Nature, National Geographic, Hakai, Undark and Sapiens. From 2013 to 2015 she wrote the weekly On Science column for the American Scholar. Glausiusz is the author of Buzz: The Intimate Bond between Humans and Insects. Follow her on Twitter @josiegz.