I experienced early a challenge that comes ultimately to every parent: the release of control that our children demand of us as they grow. There is, in fact, no grand plan. We give them life, but we raise them in conditions not entirely of our own making.

BY MIRIAM EDELSON

IMAGE BY EBRU KUR

Diary Entry: April 20, 1990 

An intravenous feeding line is threaded through a plastic bubble perched on our newborn baby’s head, the only site on his body where a large enough vein can be found. He is helpless, the heaving of his tiny chest barely visible. I am aghast at the multitude of tubes that, entwined around him like an exit ramp on a freeway, connect to various appliances. Some beep, others hum, their brightly coloured dials seeming to light a path by which our boy might wander out of this strange universe. 

Groggy from an anaesthetic, I meet my little son for the first time. Weighing less than six pounds, he is resting in a clear plastic rectangular box on wheels. It is the size of a small suitcase. The nurse assures me that he is snug as a bug but needs to be watched closely for respiratory distress. 

Baby Jake is resting and the warmth of a pale blue knit cap, I hope, is offering him some measure of comfort. He is fighting valiantly, making a difficult, meandering journey into our world. The nurses will not yet let me hold him; the danger of infection is too great. But, they say, I can start expressing breast milk to help sustain him. For the time being, he takes small amounts of water through the intravenous line. Burrowed in the transparent isolette, he resembles a creature descended from outer space—except that, because of the unexpected Caesarean birth, his head is perfectly shaped. 

My baby’s abrupt separation from my body is a jarring break from the nine months I carried him securely in my belly. If I were not so in need of healing time myself, I suspect I would feel even more at a loose end. We are able to stroke him gently through the small, antiseptic apertures that open like portholes on the side of his spaceship. He does not flinch from our touch. Still, the absence of the baby in my arms, at my breast, thwarts a most primal urge. At certain moments, I experience an overwhelming desire to spirit him away from this place. 

 * 

Diary Entry: April 18, 1990 

“Breathe me, Vicki,” I implore our midwife. She is close by my side, my steadfast support for nine months. She has offered me excellent and compassionate prenatal care and has been my anchor through twenty-four hours of labour.  I am now nearly ten centimetres dilated and am impatiently anticipating the prize: the chance to push out the baby still encased in my body. But it is not to be. In excruciating pain, I am examined by an obstetrician who declares that a Caesarean section is required. It seems the baby’s head is extended backward, a condition that makes the surgery necessary and urgent. I am crestfallen, but Vicki convinces me gently, yet firmly, that there is no alternative. 

What had been a relatively calm labour—which had started at home, where my early contractions were accompanied by the tunes of Otis Redding, and then moved to the hospital room—suddenly transformed into a high-stakes medical procedure. It took the anaesthetist three pokes into my back before he succeeded in shooting me up with pain medication. I was whisked to a stainless-steel operating theatre teeming with highly trained medical personnel. That is all I remember. 

I am told later, after meeting my baby for the first time that “able hands” had transferred him to a workstation a dozen steps away from my cot. A team of three professionals tried to kickstart Jake’s breathing by inserting a tube down through his nose into his lungs to suction out copious amounts of mucus. They positioned a pint-sized oxygen mask over his little face because he was not breathing spontaneously, his lungs evidently quite wet. Some resuscitation was required and, at thirty minutes old, a tube was inserted down into his trachea to deliver oxygen directly into his lungs to guard them from collapse. He was swiftly transported to the high-tech neonatal intensive care unit of the nearby children’s hospital. His condition was thought to be dire. 

 * 

Jake’s first days in hospital were intense. Doctors and nurses poked more needles through his tiny feet and head than the average tattoo parlour artist. More plastic tubing was stuffed up his nose in seven days than most of us might experience in a lifetime. In addition, he lost more than a pound during those first few days, a greater fluctuation than normally expected. 

I now understand that the medical emergency at Jake’s birth was also a defining moment for me as a mother. I experienced early a challenge that comes ultimately to every parent: the release of control that our children demand of us as they grow. There is, in fact, no grand plan. We give them life, but we raise them in conditions not entirely of our own making. 

A treacherous journey had begun—for Jake and for us. In another era, Jake most certainly would have died at birth or soon after. Only my womb’s complex ecosystem was fashioned so that he could flourish. Inside me, he was well. The outside world could not sustain him. After seven days, he was scheduled for a CT scan. For some unknown reason, we were not made aware of this significant diagnostic procedure. The results were not good. There were marks indicating calcifications on his brain, and the corpus callosum, a key brain component that connects the hemispheres, was entirely absent.  

We received these results over the telephone one evening. Despondent and confused, my then husband and I consoled one another as best we could. Questions abounded and feelings of peace were completely out of reach. As more information was provided to us over the next months, we never adapted to the sensation of absolute powerlessness that coloured our days. 

* 

Once Jake came home, we struggled with his feeding, trying to get his weight up. Doctors insisted that we introduce formula as well as breast milk. One pediatrician became quite vexed at my insistence on breastfeeding. “I saw plenty of babies die of malnutrition in Africa,” she growled, “I’m not going to allow it here.” We began a feeding marathon, supplementing breast milk hourly—day and night—with formula fed to him through tiny tubes. In a week Jake had gained a pound and was considered out of the extreme danger zone. 

His breathing continued to be problematic, and after studies at the children’s hospital, it was determined that he could not coordinate his breathing and eating. A gastric tube inserted into his stomach was the recommended solution. My husband and I struggled with where we would draw the line in terms of Jake’s care. We were against the taking of any heroic measures. We firmly believed that nature should be allowed to take its course, no matter the outcome. In the end, after a difficult meeting with the head of the gastro-intestinal department at the hospital, we agreed to the gastric tube, so long as it did not prevent reflux. He had helped us to understand that it was the upward flow of fluid carrying bacteria from reflux that could lead to pneumonia, the most common cause of natural death for such medically fragile infants. 

These were tough decisions to make. Our friends and family listened to us for weeks on end, as we debated the pros and cons of different care modalities. The most important consideration, we felt, was that Jake not be in any pain. We put a “Do Not Resuscitate” order on his chart and continued feeding and loving him, no holds barred. 

We were fortunate that Jake was our first child. We loved him like any other newborn, notwithstanding his challenges. We didn’t know any better. Certainly, he had problems—deficits even—and he wasn’t meeting regular milestones. But, no one could have prepared us for what came next. 

 * 

 Diary Entry: September 15, 1990 

The vomit-green walls of the hospital ward are anything but inviting, but the baby in my arms is simply gorgeous. Pure and helpless, he is very still as we wait. He’s not had it easy. Low muscle tone has negatively affected his ability to nurse, and he suffers from frequent seizures. Yet, I am struck by the sweet smell of baby powder that wafts from his compact body. We wait some more. Finally, a doctor beckons us to the hallway. He seems pressed for time. No introduction. No chair. He tells us our beautiful baby’s prognosis is a year, two at the most. I might just hurl. 

 

When Jake was six months old, after many studies and tests and meetings with neurologists and feeding experts, we were called to a meeting at the children’s hospital. It is then that we learned Jake had a rare neurological disorder called “lissencephaly”. His brain stopped developing in utero at 12–14 weeks and it had none of the normal hills and valleys that contain the information that governs normal development. These babies perish young, and if they do survive, they do not learn to sit, stand, or speak. We learned that this picture would define Jake’s future.  

 * 

The delivery of our baby’s diagnosis and prognosis was nothing short of brutal. I made a complaint to the hospital ombudsperson, but nothing ever came of it. If I ran into that doctor even today, thirty-two years later, I’d bop him in the nose. I might then explain why: his lack of professional empathy had been a devastating experience for us. 

 * 

Later that week, we were referred to the genetic counselling program at the hospital. The objective was to narrow down the possible causes of Jake’s condition. Over the course of a couple hours, the genetic counsellors drew out and debunked our fears one by one. No, Jake’s lissencephaly was not due to the fact that I had exercised during the pregnancy. Nor was it a result of the Tylenol that I had once taken for an unrelenting headache. It was no such thing. They concluded that it was an “act of nature”; some rare chromosomal abnormality had occurred at Jake’s conception that was no fault of ours. 

This information was imparted in a skilled, professional, and empathetic manner. It was not at all like our questionable experience with a couple of neurologists we’d met along the way. The genetic counselling team operated from a diametrically opposed framework. They wanted families to understand the issues facing their children and to assuage any lingering sense of guilt, especially for mothers.  

The information that nature had malfunctioned was very liberating. I had imagined all sorts of reasons for Jake’s illness and none of them were deemed valid. In effect, Jake had been born with a design flaw. The whole situation continued to weigh me down, and I sought the assistance of a psychotherapist to try to make sense of everything that was happening. This was a long and difficult process, and one that helped me immensely to carry on effectively as Jake’s mother and advocate as he grew. 

 * 

Jake sprouted into a beautiful boy with soulful blue eyes, who erupted into smiles at the flicker of light in his face. He was unable to sit, stand, or speak, and received nourishment through a feeding tube to bypass his raspy breathing. And yet, with a voice that sounded like the cooing of a pigeon, he communicated his pleasure and discomfort. Through all our trials and tribulations, I never stopped loving him at one-hundred miles per hour. 

In 2004, just before his fourteenth birthday, Jake’s heart and lungs finally gave out, and he died peacefully in his sleep. He had outlived his prognosis by twelve years. With his every laboured breath, he taught our family important lessons about loving and offering compassion to others. He is survived by his very healthy younger sister, Emma. She continues to be a joy and challenge in all the ways parents hope. 

Miriam Edelson is a neurodivergent writer, settler, and mother living in Toronto, Canada. Her literary non-fiction, personal essays, and commentaries have appeared in The Globe and Mail, Toronto Star, various U.S., U.K., and Canadian literary journals and on CBC Radio. Her latest book, “The Swirl in my Burl”, a collection of essays, was published in October 2022. 

Image: We Are Safe (Ebru Kur, 2023)

Edited for publication by Pranaya Nair, as part of the Professional Writing and Communications Program.

HLR Spotlight is a collaboration between the Faculty of Media & Creative Arts and the Faculty of Liberal Arts & Sciences and Innovative Learning at Humber College in Toronto, Ontario. This project is funded by Humber’s Office of Research & Innovation.