A Healthcare System that is Learning, Still

It’s an understatement to say that losing a child is hard.

It’s an understatement to say that losing a child is life altering. 

Many of us have experienced loss through stillbirth, miscarriage, termination or infant death. And let’s not forget about the countless women who never see two lines on a pregnancy test – failed tries, countless “I’m sorry, not this time”. Each “I’m sorry, not this time” is a loss of hope, of self-belief and of a child that hasn’t yet come. And sometimes, never does.

The stories are different but we all stand in solidarity.

I was just 26 years old, a baby myself, when my first pregnancy ended in stillbirth.

The story you’ll read below is a Cole’s notes version of my experience on that day. It doesn’t even begin to look at the aftermath. It’s also a cry for change – a change in how health professionals deal with loss and the patients experiencing a loss.

Arriving at the Hospital and the Wretched Nurse

"I haven't felt the baby move in 2 days", I said.

"Why did you wait so long?” was the nurses immediate reply. Her words stabbed me.

I'll never forget those words.

I can't remember my response but I do remember feeling very little in that moment. Like I had done something wrong, like I should have come sooner - even though I now know the outcome would have been the same. What does a 26 year old with no prior pregnancy experience know about pregnancy? In my case, nothing. What does a 26 year old with no prior pregnancy experience know about how often a baby should kick in the third trimester? In my case, not much. Deep down, I knew something wasn’t right but hope and fear kept me in denial. It was when I purposefully drank that big glass of orange juice, waiting for a kick that didn’t come, that I knew. 

The Build Up

The wretched nurse put me in a small, sterile room with a curtain for a door. The room had one single hospital bed, one ultrasound machine, one plastic chair and lots of cold air. A few minutes later, a different nurse walked in. I knew the drill. Pull up my t-shirt, lower my pants and reveal my belly for the ultra-cold clear gel to get squirted on me, followed by the hand-held wand. I don't think I said anything and neither did she.

It didn't take long before she stood up, still without saying anything, and walked out of the curtain door.

A few minutes later a Fellow walked in, introducing himself as such. I don't remember his name or what he looked like. I only remember that he sat down, did the gel and ultrasound wand thing, stood up without saying a word and walked out of the curtain door.

The Final Blow

A few more minutes later, a tall, slim man walked in. "Hi, I'm Dr. R", he introduced himself (omitting full name for privacy). I knew something was very wrong when each person before him walked out of the curtain door, speechless, and called upon someone more qualified – someone with more experience and expertise who could deliver the final blow. I just didn’t know yet how hard that blow was going to be. Dr. R did the gel and ultrasound thing. This time, instead of getting up and walking out of the curtain door, he turned to me and cast more words that I will never forget.

"I'm sorry, there is no heartbeat."

Bless Dr. R who happened to be on call that day. He was kind and gracious. And, I’m sure he would much rather have not been on call that day.

I sat up from lying down, put my head in my hands and cried.

A Woman’s Guilt

"I'm sorry", I said to him. “Him” being my now ex-husband. Those were the first words out of my mouth. I don't know what I was sorry for. If it was for not giving him a son, if it was for failing, if it was for giving him this pain. I don't know. But, I'm sorry to myself for having said sorry to him. Time has taught me that it wasn't my fault and I didn't make this happen. I shouldn’t have been sorry then and I’m certainly not sorry now.

Preparing for the Loud Silence

I recall Dr. R leaving the curtain door to give us some time and space. I don't remember how long he was gone but it couldn't have been too long. When he came back, he explained what would happen next. I would be admitted to a room and his team would start the process of inducing labour by inserting some pills up my vagina. I don't know how I got to that other room. Did I walk? Did they put me in a wheelchair? Was it on the same floor? The questions are clear but the answers are a blur. It felt like an eternity. But, looking back, it all happened so fast. I lay in a new hospital bed, in a new room. My mom was already there. Did I call her? Did my now ex-husband call her? I can't remember.

I do remember calling my doula, the lady that I had hired to help me breathe through what was supposed to be one of the happiest moments of my life. Instead, she came to soften my sorrows, explain to me what I should expect before and after, and that she would be there for me as long as I needed. She stayed true to her word and slept on the floor that evening and into the next morning. 

The next morning, I was brought into yet another room. The delivery room. I don’t remember how I go there, either. I wasn't having contractions but the medical team assured me that they would come this morning. This Monday morning in the middle of a hot July. It was a long, tearful, hurtful night and on that morning, that morning in the middle of a hot July, as I lay in the delivery room, I tried to sleep. In and out, in and out. I opted out of an epidural so they gave me fentanyl (yes, fentanyl) to ease the pain that was to come. 

The Zoo

Nurses came and went. Doctors came and went. At some point, a doctor walked in with no less than 5 medical residents and observers. I lay on the bed looking ahead to a row of six "experts" who evidently had no compassion or understanding of a positive patient experience. They also had no clue about not making the patient, in her darkest day, feel like she was a caged animal in a zoo to be observed, awed, and examined.

I wasn't asked if they could all be there, just that they were there and that they were going to watch. I politely told all but one of the spectators to fuck off. I didn’t care which one, but it could only be one. One observer, I could handle. This reality show audience, I could not. The doctor, of course, also had to stay. So four spectators tucked their tails behind them and scurried out of the room. 

Grace in the Storm

I clearly remember Nurse Anne. A tall, thin, soft-spoken white woman with above-the-shoulder dirty blonde, wavy hair. She was so peaceful, almost angelic. Tending to my every need with care and understanding. She had clearly walked through this storm before with some other shattered woman, and some other breathless child. She brought me to the washroom every 5 minutes as I got much closer to labour and I just thought that I had to keep peeing. The drugs made me dizzy as I repeatedly stood up and layed back down. Nurse Anne held my arm to steady me each time. And then suddenly, after a slow build up and lots of trips to pee, it came. Fast and furious, just like they said it would. I walked back towards the bed from the washroom and crouched over in pain. I had to push. Nurse Anne and whoever else was in the room at the time helped me over to the bed.

I pushed, but didn't feel like anything was happening. I remember thinking that I must not be pushing correctly because it didn't feel like anything was happening - he wasn’t coming out. After 3 unsuccessful pushes, I somehow remembered a tip that my prenatal yoga teacher gave me. She said, “When you're in labour, push as if you're pooing.” And so that's what I did. After just a few of those pushes, he came out.

He was out.

Deafening Silence

I’ll never forget that particular sound of silence. It’s not like any other sound of silence. It’s the sound of silence where no one knows what to say. No one knows what to do. No one wants to be there. It’s the sound of silence filled with guilt, questions, pain and hate.

It’s a very particular sound of silence when a birthed child does not cry, ever.

The immediate moments that followed are a blur but I do have some very vivid recollections of that hot July day. My son, Damiano, was born at 8:09am. The room was still and the room was silent. They weighed him. He weighed 2 lbs. 1 oz.

A tiny blue crocheted outfit was brought into the room. It came from the pile of donations that the hospital collects from caring people, for times like these. The outfit that I wanted to put my son in, for what was to be his first day at home with us, was simply too big. Way too big to fit his fully formed 2 lb. 1 oz. body that was long and slender. His hands and feet were big, almost too big for his body and his fingers and toes were long, just like my daughter's fingers when she was born a few years later. When I look at her hands now, I always think of him. I imagine that his hands would have been the same.

The Thief

A nurse dressed him. I didn't think much of it in the moment. It just happened. I wasn't asked if I wanted to dress my own child, or if it would be ok for her to do it. She just did it. It wasn't until later that I decided I hated that nurse. Everything was taken from me that day and she had no notion to give me at least that – that moment where I could have dressed my son for the first, only, and last time. 

Healthcare Workers Checking off their Boxes

Not long after he was born and dressed by a stranger, a social worker burst into the room. She introduced herself and started telling me about the things that social workers tell newly bereaved moms. I remember thinking "what the fuck, I just gave birth. This just happened. Can you give me some space?" Except, I wasn't only thinking it, I was saying it. She scurried away with her tail between her legs and I never saw her again.

Instead, I was presented with a package of papers. Papers that the hospital thought would hold all the answers for a grieving mom and all the ways to take that grief away. I don't remember looking much at those papers. 

The Dreaded Hallway for People Like Me

I was put in a wheelchair and pushed to another room. I held my dead, swaddled child in my arms and was rolled down a hall into a private room. The hall was quiet. It was a part of the maternity ward for women like me. Women who had just lost a child. There were no other new families, no crying babies, no balloons or flowers or teddy bears. No, that was in a different part of the maternity ward: the part filled with life.

I rolled into the stale private room with my dead son in my arms and cried. I wiped my own tears and I cried. My mom was there. My now ex-husband was there. I have a picture of me in that room holding my dead son. I sat on the hospital bed. My hair was tied, my fringe fell to the side of my forehead. I wore a yellow, ribbed, wife-beater tank top and navy blue gauchos. I sat facing the window but I was looking down at him, cradling him in my arms. My face was red and my eyes were puffy - evidence of many tears, one life gone and one life changed forever. 

The Good Wife

It was early afternoon. The nurses told me that I could stay as long as I wanted, as long as I needed. I didn't ever want to leave. My now ex-husband was eager to leave. He was eager to put this sight out of his vision and walk away. I wanted to stay. “Just a little longer”, I would ask. “I'm not ready to go yet”, I said.

I don't know why I didn't think to just go home later, after he had left. But, like all good wives, I abided and soon after, I left my dead son - alone and cold. I wish now that I had a voice then. I wish now that I stayed. That I stayed just a bit longer. 

The 6-week Follow-Up

I met with my obstetrician 6 weeks after I buried my son. She didn’t get in touch with me at all within those 6 weeks. No phone call to express her condolences. No email to ask how I was doing. Just one visit, 6 weeks later. This time, instead of sitting in a clinic room, I sat in her office. She dropped her bottom lip, turned her head to the side and said that she was sorry. No explanations, no real remorse. And she still didn’t ask how I was doing.

Apparently something was wrong with my placenta during the pregnancy and she referred me to the Placenta Clinic within the Special Pregnancy Program, for when I was ready to try again. While it’s a story for another day, I want to express here how indebted I am to Drs. John Kingdom and Rory Windrim, and the entire care team at the Placenta Clinic within the Special Pregnancy Program at Mt. Sinai Hospital. There are no words to describe the outstanding care they provide for high-risk pregnancies.

A few weeks after that meeting in her office, I requested my medical records from the obstetrician. I was in search for any clue, any answer, any reason as to why this nightmare might have happened. What was it about my placenta? What did the ultrasounds show? What did she miss? There had to be something.

She told me the records couldn't be released; they were the hospital's property. Bullshit. I may have been young and naive but stupid I was not. My health records were my property. She conceded. However, only in a half-ass way. When I opened up the envelope with copies of papers that had to have some answers, half of them were missing. It would have been laughable if it was some sort of big screen comedy. I was pissed. I had a few more heated conversations with her office staff and eventually got all my records. All my records, but still no answers. 

Then and Now

Our neonatal, maternal and mental health care teams have come a long way in the 13 years since my loss.

Thirteen years ago, my experience of loss exposed the stark realities of the healthcare system's shortcomings in dealing with stillbirth. The lack of empathy, the absence of support, and the insensitivity to grieving parents' needs were glaring. From the callous remarks of the wretched nurse to the impersonal procession of medical staff, each interaction underscored the system's inadequacies. However, as I revisit those painful moments, I also recognize the progress we've made.

Today, neonatal, maternal, and mental health care teams are evolving, acknowledging the importance of empathy, support, and comprehensive care for families navigating loss. There's still much to be done, but the journey from then to now offers hope for a healthcare system that continues to learn and grow, striving to provide solace and healing to grieving parents.