Photo: Sara Martel
The last picture I took before my son was born was of my husband, Mark, wading into the lake at the cottage. It captures the perfection of a clear sky and dazzling water. If the camera had been turned the other way, it would have revealed me standing on the shore, smiling serenely, with an almost-full-moon belly filling out my maternity swimsuit. I was 28 weeks pregnant, and after months of worry, I was finally starting to relax and enjoy the wonderfully bizarre experience of growing a human.
Even before this pregnancy, I’d been nervous—in a way, I knew too much. I had spent the previous five years researching the cultural and social aspects of reproductive loss for my Ph.D., studying how western society handles and makes meaning of miscarriages, stillbirths and neonatal deaths. I’d been fully immersed in the medical history of reproduction and the stories of bereaved parents—how their losses aren’t always discussed or supported, as well as what helped them heal. When I began my research, I had never been pregnant. Then, as I wrote the last chapters of my dissertation, I suffered two miscarriages.
So with my third pregnancy, it was a massive relief to make it through the first trimester. It was downright thrilling to be finishing up the second; I started to daydream about what the third trimester might be like and caught myself visualizing the actual birth. I imagined the call to the grandparents and what it’d be like to bring our baby home. This time, it was really going to happen.
Way too soon
Early the next morning at the cottage, I woke up to a feeling of wetness, and I dragged myself to the bathroom, begrudging the idea I was now entering the phase of pregnancy when peeing oneself was just part of the game. Then I saw the blood. I called my midwife, who told me to get to the hospital immediately. But I was nowhere near a hospital; I was in rural Ontario, three hours away from Toronto, where I had planned on giving birth. The local clinic was the only option.
When we arrived, two worried nurses instructed me to lie down on the gurney and to be as still as possible. (Here’s something you don’t want to see: The faces of medical staff looking genuinely concerned that someone in your condition is now in their care.) They simply weren’t set up to deliver full-term babies, never mind a preterm delivery this risky. The best option was to move me to a hospital with high-risk obstetrics and a neonatal intensive care unit (NICU). The nurses and I were on the same page. We all wanted me out of there.
“Great, let’s do this,” I rallied.
“Well, we have to find a bed first,” one nurse responded. “We need a hospital that can take you and then we need a helicopter to get you there.” They started calling hospitals in Toronto. None of them had a bed available in their high-risk unit. No beds were free in southwestern Ontario, none in eastern Ontario. When they mentioned Buffalo and Detroit, Mark and I started to plan how he’d drive to Toronto to pick up our passports and then drive across the border to meet me. For the next five hours, I lay immobile on that gurney as the nurses hunted for a bed and my husband paced. While I didn’t yet have contractions, each time I shifted my weight, I could feel more amniotic fluid leak out. I pulled out every mindfulness trick I could remember from prenatal yoga to convince my body not to let this baby out. With one hand on my heart and the other on my belly, I repeated to myself: I’m OK, you’re OK. We’re going to get help.
I had a pretty good idea what that help would look like. For my Ph.D., I had conducted my academic fieldwork at a Level 3 neonatal intensive care unit—the kind of facility my baby would need. I had sifted through stacks of academic journals explaining the intensive care technologies used for infants, the patients the NICU served and the statistical outcomes. Survival rates for babies born around 28 weeks’ gestation are relatively high, I reminded myself, but only with immediate and effective intervention. My son would need an incubator to regulate his body temperature. He would need a ventilator to breathe. He would be too underdeveloped to suck or swallow, so he’d need equipment to give him nutrition. He might need antibiotics. We needed a lot of help.
To help strengthen and prepare my baby’s lungs for breathing outside the womb, the nurses injected me with steroids. That needle prick brought things into sharp focus. By the end of the day, this baby would be outside my body. This was how his life was going to begin. This was our birth story.
In talking to so many parents who had experienced some kind of reproductive loss, a few of them told me they hoped my work wouldn’t make me nervous about having a baby. At the time, I was confident it wouldn’t, but now I was on the edge of labour way too soon, and my brain was buzzing with all the things that could go wrong.
“We’ve got a bed in Toronto!” one nurse shouted, sounding as relieved as we felt. An hour later I was in a helicopter soaring across the province, watching the greenery of cottage country give way to the grey of the city. I’ve never been so happy to see urban sprawl. As soon as we landed, my labour pains started—it was as if my body knew it was in the right place and decided to let go.
Once I was inside, a paediatrician sat down beside me to do her due diligence, listing off all the risks my son would face as a baby born three months premature. I lay with my eyes closed, trying to concentrate on her words, which kept trailing off into the fog of labour pain. He might not survive. He might have heart damage. He might have weak lungs. He might be blind or deaf. She would pause when a contraction hit. He might have bleeding on his brain. He was at a higher risk for a host of neurological and cognitive conditions. As serious as this list was, none of it mattered to me. He was coming. Risk was meaningless. I just wanted to meet my son, not knowing what it would be like to meet him this early.
He apparently wanted to meet me, too, because within an hour I was being wheeled into the delivery room. The high-risk obstetrician stood above my gurney and gave me a calm smile as she snapped on her gloves. “Just so you know, 28 weeks isn’t that bad these days. We see a lot earlier deliveries in here,” she said.
I clung to those words, and when the emotional shock and physical pain of delivery wore off, I was able to reconcile what I knew with what the OB was telling me. In plain terms, she was trying to reassure me that 28 weeks was on the upper edge of viability, meaning the point in pregnancy at which life becomes sustainable outside the womb. Medical innovations in the 1960s and 1970s helped push that limit earlier and earlier in gestation, and survival rates have risen dramatically over the past few decades. One in 12 babies is born prematurely in Canada, and while prematurity remains one of the leading complications in infant death in developed countries, the threshold of viability is now defined as low as 23 weeks gestational age. At the height of labour, however, my intellectual self looted my brain of all these statistics and facts, and darted out of the sterilized room, leaving me to deal with the fear and the pain.
The instant Nathan was delivered, he was carried out of the room and put into the arms of the paediatrician who had seen us earlier. Still lying on the delivery bed, barely catching my breath from labour, I was told there was a screen above my head that was wired to the examination room where our son had been taken. I watched as Mark’s hands occasionally moved into the frame, snapping cellphone photos of our tiny baby. In my research, I had looked at how photography is incorporated into bereavement support for parents whose babies have died in intensive care. I knew these images and other mementoes meant the world to many mothers and fathers; they were an integral part of how they made sense of their experience and how they told their child’s story in the months and years after. As surreal as it was to watch our son being wrapped in plastic to maintain his body temperature, I knew these moments mattered. They were our moments, and we would want them captured.
I met Nathan about an hour later, in a small room in the NICU that was so full of equipment my wheelchair barely fit—the wheels clanged against the bag poles and oxygen machines as I tried to get as close as possible to the 2.8-pound bundle lying curled up in the Plexiglas box. His diaper wasn’t much bigger than an iPhone, yet it looked enormous around his impossibly skinny legs. I could barely see his little face under the bandages holding in place the breathing tube down his throat and the feeding tube up his nose. The IV entered his swollen belly through his umbilical cord. A heart monitor was clamped to one tiny foot. His severely coned head had a tiny knitted hat perched on top, and around its edges sprouted little tufts of blond hair. The first thing we noticed was how big his hands were at the ends of his scrawny arms. They looked like lion paws. He was mighty.
Photo: Sara Martel
The next few days were spent staring into Nathan’s incubator and gathering any information we could about how he was doing. He had been given surfactant to make sure his lungs didn’t stick together or collapse. His breathing had mechanical support but was holding steady. Ultrasounds of his brain showed no signs of bleeding. The doctors were observing his heart, but any issues looked like they might resolve on their own. So by the third day, they determined he was stable enough for me to hold him. Neonatal care has embraced the idea of “kangaroo care,” which has parents hold their babies skin-to-skin as much as possible. I held my breath as the nurses navigated the wires and breathing apparatus to delicately transfer him from the incubator to my chest. Seeing his vitals stabilize as he nestled into me was the most incredible feeling, and I cried tears of joy and shock. Was I supposed to celebrate or grieve? Was I saying hello or saying goodbye? “Happiness” doesn’t really capture the euphoria I felt when my baby was born, and “worry” is equally inadequate to convey the dread that he might be taken away. My postpartum mind and body swung from fear of getting attached to fear of missing a single moment.
I slept beside his incubator for the first week, going home only to shower and grab a change of clothes. The panic of separation was paralyzing; as soon as we pulled out of the hospital parking lot, I’d start staring at photos of him on my cellphone. Because I had heard so many stories of loss, I knew death was not impossible. While the doctors were optimistic about Nathan’s prognosis, I couldn’t shake the feeling we were one serious infection or bad test result away from losing him. I was living as if every day were his last.
After a particularly rough day of watching a team of clinicians fail multiple times to insert an IV into his paper-thin veins, I collapsed onto my husband. I could no longer function with all this fear. He, too, knew what the possibilities were. But the only way to survive—for us to make it and for Nathan to make it—was to believe he was going to be OK, Mark told me. Like, really believe it. My task now, it was painfully clear, was to separate what I knew through my research from what I knew about Nathan, whose story wasn’t yet written. Sitting on the couch, exhausted but holding each other up, Mark and I agreed: Nathan was going to make it. Period. We’re OK, you’re OK. We have help.
A different beginning
In all the daydreaming I had done during my pregnancy, never did I imagine our first two months of parenthood would be spent in the NICU. I didn’t picture feeding my baby by holding up a vial of breastmilk so it could empty into the tube running up his nose. I didn’t know I would be pumping breastmilk every four hours around the clock to try to get my production up, often in the communal “pump room” with other NICU moms, who would become my community. I couldn’t have guessed how awkward it’d be to change diapers through the small opening of an incubator or how happy I would be to take on such “normal” parenting tasks. I hadn’t planned on needing to wash my hands raw to prevent infection in such a fragile little body. But these were the actions that made up our long days.
I craved the normalcy of bringing Nathan home and starting our life as a family of three. I wanted nothing more than to lay him in his bassinet instead of a sterilized Plexiglas cot or to bathe him without having to negotiate all the wires. But the hospital environment was all we knew. In the NICU, caring for Nathan was regimented: We took his temperature, changed his diaper and fed him every four hours, marking everything down in a chart. We were parenting by committee, relying on the nurses’ input as to whether he was warm enough, whether he was eating enough, if his bowel movements looked normal, if his reflux seemed serious—all the questions new parents sort out on their own. And in so many ways, the nurses became a bigger part of Nathan’s life than any of our friends or family. They were by his side day and night. And, in a way, they were taking care of us, too. So when Nathan turned two months old (still about a month shy of his original due date), and the doctors started to hint we might be discharged soon, I felt a breathless mix of relief and panic.
How to help your baby thrive in the NICU
At that point, Nathan was still suffering episodes of bradycardia, common in preemies, which meant he would suddenly forget to breathe for a few seconds and then his heart rate would slow down. Whenever he’d have a “brady,” the alarm would sound, and we would gently stimulate him by rubbing his back or occasionally applying a breathing mask until he took a breath. For weeks we stared at the screen wired to his sensors and anticipated these drops.
“Look at your baby!” the nurses implored. “The monitors aren’t going home with you, so you need to know how to read your baby!”
Logically, I understood, but emotionally, waiting for your baby to turn blue will never make sense to me, which meant the ride home from the hospital—without any monitors—was terrifying. I sat in the backseat with my eyes glued to Nathan, worrying about his oxygen saturation levels. But then, as I contemplated how different his skin looked in daylight compared with the fluorescent lights he had lived under his whole life, the idea we were finally going to introduce him to the world made me so happy I giggled.
Life after the NICU
The nurses were right about life without monitors: You do know when your baby is OK and when he is not. Nathan only stopped breathing once, a few days after we brought him home. We somehow managed to start stimulating him while also calmly calling 911. We all survived, though watching two giant paramedics huddled around my tiny, languid son took a few years off my own life. Researchers have started to look into acute stress disorders in parents with NICU babies; this resonates with my own experience in ways I’m still processing. All the worries I might have had as a new parent were intensified to an extent that sometimes tapped out my emotional resources. For instance, the doctors had been clear about the heightened risks of sudden infant death syndrome among very preterm babies. The fear that Nathan might not wake up sat on my heart like a stone.
We did what any new parents who have totally lost their minds to worry would do: We set up camp in the living room. We kept the lights on low all night, and my husband slept on the floor on one side of the bassinet while I lay on the couch on the other side. I liked to be at eye level so when I couldn’t hear Nathan breathing I could look to see his chest moving. We existed in this ridiculous configuration for a month before moving his bassinet to the foot of our bed. I slept upside down so my head was still near him for frequent checks. Two months after that, we moved him to his own crib across from our bed. For those first few nights, the two feet between us felt like an impossible gulf. My browser history from that time reveals such searches as “baby breathing sensors for home cribs.” I wanted my monitors back.
Photo: Sara Martel
I also wanted my sterilized environment back. While he was discharged with minimal health issues, Nathan’s prematurity still meant his immune system was extremely delicate. The doctors made it clear that a common cold could easily lead to complications and re-hospitalization. When we asked how careful we had to be, the answer was muddled: Go home and live a normal life, but don’t let too many people hold the baby, don’t take him on public transit, don’t let other kids touch him or his things and avoid drop-ins or other parent-and-baby activities. In short: Live the normal life of parents of a newborn without doing any of the normal things parents do with a newborn. We had swapped the isolation of the NICU for a new one.
The tools I had planned on using as a parent—like common sense and instinct—were broken by the intense anxieties that haunted me after my traumatic delivery and the intensive care roller coaster. The idea that everything would be fine was erased by the paralyzing fear that anything could happen. My research had proven that. My miscarriages had proven that. My birth experience had proven that. We could still lose him. The possibility of loss or critical illness coloured my entire first year as a new mother. When a well-meaning neighbour touched his face or hands as we walked by, it sent me spiralling into a panic. I would kiss his little head and then immediately wonder how I would live with myself if I were the one who got him sick. Nathan required surgery a few months after coming home. Making it through that ordeal was a huge step forward. Then emerging from cold and flu season without any major complications was another giant leap toward sustained sanity.
Although his paediatricians tell us we still have to be careful with his immune system, he is much bigger and stronger now that he’s just over a year old. My postpartum anxiety has become much less acute as I settle into faith that everything will be OK. I still use a baby monitor. I still bolt awake in the middle of the night to squint into the screen to watch Nathan breathe. I still ride a wave of panic when it seems like he has come down with something. I know anything can happen, even the worst thing. That’s what life is. That’s what parenting is.
What I remind myself in my more intense moments of worry, however, is that I didn’t only learn about loss in my research. If you look for them, there are a million stories of parents’ resilience in the face of losing a wished-for pregnancy, of caring for a baby through a critical illness, of surviving the death of a baby. These stories are also about courage, grace, healing and strength. If I let myself learn from them as a new parent, my story can be as well.
Preemie care now in the hands of parents
365 days in the life of a preemie
Researchers describe the prognosis for newborns with full trisomy 18 as poor; only approximately 10% survive to their first birthdays. Cause of death is usually related to complications due to central apnea and/or cardiac anomalies such as ventricular septal defect. Several recent studies described medical interventions for surviving newborns, including provision of supplemental oxygen, continuous positive airway pressure, and related mechanical ventilation. There needs to be further examination of the care received by newborns with full trisomy 18 during the prenatal, neonatal, and immediate perinatal periods. Professionals must be aware of possible medical complications as well as strategies to facilitate collaboration to ensure appropriate treatment decisions.
Simon was born on September 7, 2010 at 38 weeks gestation. He weighed 1,900 grams and presented with patent ductus arteriosus, ventricular septal defect, coarctation and a bilateral cleft lip. He was diagnosed at 3 days with trisomy 18 and lived 88.5 days in the Level III neonatal intensive care unit of a mid-sized hospital in the Midwest. Simon's team of care providers included neonatologists, a pediatric cardiologist, a pharmacist, nurses, and respiratory therapists. This group worked closely with Simon's parents to make treatment decisions (e.g., prostaglandins, insertion of a peripherally inserted central catheter) and manage daily care such as feeding and bathing. Most decisions were made collaboratively. When disagreements occurred, often due to his diagnosis, the majority of Simon's nurses honored his parents’ preferences. Nurses also provided support and information to Simon's parents and his older brothers (aged 7 and 5).
Initially, Simon was a candidate for heart surgery but respiratory complications delayed development of a plan until close to the time of his death. Apnea episodes became frequent and decisions were made to the optimal method of response. Simon's parents repeatedly voiced their objections to the types of interventions during apnea episodes. Several times, for example, Simon's father objected to having him “bagged” and preferred for Simon to “come back around.” They also advocated introducing tastes of breast milk, which Simon enjoyed. He also was fond of bath time with his brothers, and he communicated these emotions through gaze and facial expressions.