Our son was born with dark, wet hair and a button nose. His eyes were closed, but the death certificate later said they were brown
My son was born in Toronto on September 15, 2010. He had dark, wet hair, and when I cradled him, he was warm and damp, swaddled in a flannel hospital sheet. He smelled just how you would think a newborn baby would smell. He had a pink, thin upper lip and a button nose. His eyes were closed, but the death certificate later said they were brown. I knew, from the ultrasounds, that he had ten fingers and ten toes, but I couldn’t bring myself to count them. In fact, at first, I could hardly touch him. It was John who reached out when our midwife asked if we wanted to hold him.
My partner pulled all 2.2 pounds close to his chest and looked at me expectantly. Then John gently placed the baby in my arms. The midwives left the room and suddenly with John at my side and my son clasped close, I realized we had become a family.
We knew we were having a stillborn that night. But we didn’t know the sex and we hadn’t decided on a name.
Should we call him Charlie? I asked tentatively.
No. Just Charlie.
Charlie Showman then.
By the time we got home that night, my mum had left a cooler filled with delicious food on our front porch. A baguette, a ham and all the unpasteurized cheeses you aren’t supposed to eat when you’re pregnant. Also a bottle of wine, most of which I consumed as John and I sat on the kitchen floor sharing our picnic. At some point, I crawled into John’s lap, crumpled into a heap and began crying.
It had never occurred to me that my baby would be anything but healthy. I did everything right, followed all the rules. I took folic acid three months in advance, I abstained from alcohol. I stayed away from second-hand smoke and I limited my large fish consumption. I went to prenatal yoga, attended all of my midwifery appointments, and did all the screenings. Midwifery student by day, pregnant woman by night, I went to bed early reading books on what to expect in the pregnancy and how to survive the first year. And, like so many women do, I kept my pregnancy a secret until I had past the riskiest time, my first trimester. Then, after that three month mark and first ultrasound, I told my friends and family. Everyone was thrilled.
I was so sure about my baby’s health that I considered skipping the second trimester ultrasound. Emily, my midwifery student, persuaded me to make the appointment, telling me that I could always cancel at the last minute. Since John, a full-time musician, was out of town playing gigs, I ended up going with my mom.
An ultrasound technician isn’t allowed to share any diagnostic findings. The encounter makes for a lot of clicking and clacking on the tech’s side and not very much talking. The silence also makes for a lot of worst-case scenario films running through the mom’s mind. The techs seem to have a sense of this, so instead they might tell you what they are looking at. Here is baby’s hand—looks like you’ve got a thumb sucker! Sometimes there’s a gentle prodding of the mama’s belly with the ultrasound wand: come on baby, turn over and say hello. But nothing more than that.
As per code, our technician was quiet. But something was amiss. You could see it in the furrow of her eyebrows, the tilt of her head. After almost forty-five minutes of a knitted brow and pursed lips, she told me she would be right back with the obstetrician. Alarm bells rang loudly in my head; I was in midwifery care so an OB isn’t involved unless there is some sort of complication.
There’s something wrong, I said to my mom.
I know, she said quietly.
There was nothing left to do but wait. By the time the technician had returned with the doctor, it was clear that we were not getting out of this with midwifery care alone. I was in tears even before Nan Okun, the maternal-fetal medicine specialist working the floor that day, said anything. She handed me a box of Kleenex as she introduced herself.
Your baby has what is known as moderate fetal ascites and possibly hydrops, she began. Ascites are pools of fluid in the baby’s abdomen, where fluid isn’t usually found. There is also a suspected fluid accumulation just beneath the baby’s skin. When both of these are present at the same time, we call it hydrops fetalis. Hydrops can have many, many contributing causes. It’s more a symptom than a condition and it is very important that we don’t jump to any conclusions. Sometimes it can resolve itself. Other times it might be a little more serious. I’d like you to come in on Monday for further testing. Whatever you do tonight, please do not look this up on the Internet.
I nodded my head, left the building, and went straight home to Google. The search results let me know pretty quickly that hydrops fetalis is a relatively rare condition that usually doesn’t go away on its own, although there are some instances of spontaneous resolution. The list of causes was extremely long and didn’t sound promising: cytomegalovirus, toxoplasmosis, parvovirus 19, rubella, Bart’s disease, primary chylothorax, congenital cystic adenomatoid malformation, skeletal dysplasia. And that’s just to name a few.
By Monday morning, John had come home from tour and we headed back to the third floor of Mount Sinai Hospital in Toronto, only this time they directed us to the Special Pregnancy Unit. Finally, Dr. Ryan—the head of the Fetal Medicine Unit—entered our room. He introduced himself, and got down to business.
You haven’t been around young children recently?
Not that I can think of, I replied, feeling useless.
It’s amazing, the heartbeat is just perfect, he mused.
Back and forth he clicked, first around the baby’s heart and then around the baby’s brain. He would turn up the audio and we could see a flash in between each beat, once the heart had pumped fresh blood to the brain. Thump, thump, flash. Thump, thump, flash. Thump, thump, flash.
This tells us that the baby’s brain is getting an adequate amount of oxygen, he said. It is very unlikely therefore that there is fetal anemia.
And you’re sure you haven’t been around children, any sick kids lately? What about cats?
I’ve had cats all my life. But I stopped cleaning the litter as soon as I knew I was pregnant. I was practically bragging, happy to be able to demonstrate responsibility for one element of my pregnancy.
Dr. Ryan, I asked tentatively, what is the best-case diagnosis?
He paused. Possibly fetal anemia. If that were the case, we could do an intrauterine blood transfusion. However, that looks less and less likely given the heart rate. As he trailed off, looking at the screen, I became aware that one of the nation’s top maternal-fetal medicine specialists might be simultaneously intrigued and stumped.
Everyone from my family members and close friends, to Okun and my midwives, counseled me not to get too worried. Ultrasounds were almost too sensitive, they said, and that it is best to rule out all the less minor possibilities before getting concerned. Let’s look for horses not zebras, was how one expert tried to console me.
And I understood this; I got it. I was a midwifery student myself. While I had only completed first year, I already learned about what normal and healthy pregnancies look like. I also knew that if Dr. Ryan was finding it challenging to determine the reason for our baby having hydrops, it probably wasn’t going to be be born “normal and healthy.” For all the horses out there, I had ended up with the zebra.
The more time passed, the more I wanted to hear somebody say it out loud: this isn’t good news and soon, you are going to have to make a choice. But no one around me seemed to have the courage to say it, and I certainly didn’t have the courage to ask. So the words just floated around the room, unacknowledged, while we all turned our attention back to the thump, thump, flash of our little baby on the big screen.
It was the end of the day and we were the only ones left in the clinic.
The next day promised more tests but first, we went to the genetic counselling department. Sitting in Hana Sroka’s office was like looking at the previous day in a mirror.
I thought of the massive bulletin board filled with pictures of the many babies Dr. Ryan and the other doctors at the Special Pregnancy Unit had saved, and all of the accompanying thank you cards. I couldn’t help but wonder about the families who hadn’t submitted thank-you cards or pictures. I wondered about the babies who might be alive in this world but suffering. Or the ones who simply hadn’t made it. My hope was that our meeting with Hana’s would give us permission to wonder—without feeling like hypochondriacs or cynics or brutes—what roads we might go down.
Together, John, Hana and I mapped out DNA, etching the roots and branches of my and John’s individual family trees until it merged into our own little sapling. My head hurt from all the terminology and I realized that, in spite of Hana’s best efforts, if I hadn’t been in midwifery the year before, most of the conversation might have been inaccessible. John seemed calm but utterly overwhelmed. Soon thereafter, Dr. Chitiyat, the head of Prenatal Diagnosis and Medical Genetics department came into the room. As he pulled out a medical journal article as reference, John and I breathed sigh of relief. The night before we found that very same article. It felt good to finally feel as though we were on the same page as the experts.
With the information gathered from our family tree, blood and ultrasound results, genetic analysis, and a process of elimination, we ruled out chronic diseases, genetic disorders and maternal or fetal infections. Instead, we narrowed down our little baby’s hydrops to two or three disorders, all of which had had extremely low chances of survival.
There were essentially four possible outcomes. The first was that the fluid accumulations would go away on their own and the baby would be born perfectly healthy. This was the miracle path. The second possibility was that the baby would be born, possibly prematurely, and if he or she did survive it would almost certainly have a major disorder that would mean likely never leaving the hospital or dying sooner rather than later. The third was that the baby would be a stillborn at some point between now and full term. And the fourth was that we could terminate the pregnancy and help our little baby leave this world as peacefully as we could.
We chose the fourth road.
In the weeks that followed, I went back to school and John went to Ireland for a tour he had booked long before. I tried to hide my pregnancy as best as I could and skirted as many questions as possible—not an easy feat when surrounded by a classroom full of women fascinated with childbirth.
The baby is due sometime mid-January.
I’m twenty weeks pregnant.
No, we are not going to find out the sex.
Yes, I have had my second ultrasound.
No, we haven’t chosen a name yet.
Would love to have a home birth, definitely.
No, I haven’t really felt it kick yet. (Thank goodness I thought to myself.)
I skipped one of my friend’s weddings, studied for school and tried to listen to as much fiddle music as possible, especially that played by myself and John. I wanted to give this baby as much of us as we could, even if he or she were not meant for this world.
On September 14, 2010, John came home from tour. I took a few days off from school and together we took an elevator to an unmarked floor in Mount Sinai and I signed in to set Charlie free. I don’t remember much of that day and a half. I do remember that the nurses were very kind and that both Hana and Chitiyat came to check in on me. Our midwives were there, and for longer than they needed to. I felt guilty for asking them to stay with me, because I knew they had a lot to do, or at least might want to sleep in case they got called out to another birth. But I couldn’t stand to be there with just John alone.
A few days after Charlie died, I sent out a mass email to just about everyone we knew. What am I supposed to tell people? I cried to my midwife. We ended up sending something out that told just enough without having to say any more. It is still something I find myself reciting every so often to myself.
John and Georgina wanted to share with you news of the loss of their firstborn baby, Charlie Showman. Charlie came into this world a stillborn by the hands of midwives Katrina Kilroy and Emily Viets on September 15, 2010. Because it is unclear what exactly ailed the baby, and because it is likely that the cause of death will never be known, John and Georgina ask to be spared of any questions surrounding the details of this tragic event.
I learned a lot having Charlie. I learned that even though a first trimester ultrasound and screen usually indicates a healthy baby, it’s not a guarantee. I learned that a twenty-week termination, while not necessarily easier emotionally, is much more complicated than a first trimester abortion. You actually have to give birth to the baby, after a series of abortion pills, potions and lotions. I learned that even though the baby is likely to be very small, you might also still have to push and go through something that, while not quite as painful as a full-term labour, is certainly more painful in other ways. I learned that, without ever having attended a prenatal birth class, John was an amazing labour support person. I learned that after almost a day of waiting around in a hospital room with a view of a brick wall, something strong and fierce can come alive within me and I will insist on stripping everything away—the blanket, the top sheet, the hospital gown, the clock from the wall. And then, in the moment Charlie was born—even though I knew he was to be born dead—I learned that I loved giving birth.
Perhaps the most surprising thing I learned was the size of the dead baby club that I suddenly found myself in. I knew my parents had had a son who had died. Their first, Michael, was born with esophageal atresia, a heart condition and some form of developmental delay. He died two weeks after being born. My father, so fraught, had never once spoken of him to me until John and I were making decisions about Charlie, and only then in an email that was simultaneously tragic and touching. If nothing else, it helped me realize that his silence over these past decades was due to heartbreak rather than indifference. Equally fraught, my mum chose a different tack and spoke often of Michael, and always made sure my siblings and I knew that we had an older brother. Every year around Christmas my mum would get noticeably sad and quiet. Inevitably, one of us would ask us what was wrong and she would say, her eyes filling up with tears, “Today was the day that Michael died.” Or perhaps “Today would have been your brother’s twenty-seventh birthday.”
I was surprised to learn of the babies in my own family who had died, either at birth or shortly thereafter. Some of them were named, like Elizabeth after my Aunty Elizabeth, and some of them weren’t. None of these little babies had any known reason for being born the way they way were, and while none of them have been forgotten, they are very rarely spoken of. After all, there’s only so much one can say.
Once we sent out our mass email and our news became public, cards and letters came pouring in. Some were from women my age, some my mother’s age, and some the age of my grandmother had she still been alive. Each letter came with its own story—a miscarriage or abortion or baby lost during birth or soon after. One told me of a baby that had been born at full-term, expected to be healthy, but instead came out dead. Others described stories more similar to mine, babies that for one reason or another, were not destined for this world and whose parents decided to set them free. They all told me that while I may always think of Charlie with a heavy heart, it does indeed get easier, or at least a little more bearable.
After Charlie was born, there was still more to learn. I found out that baby cremations are provided at a discount. I never had the nerve to ask whether it was because dead babies are extra small or because the death of a baby is extra sad. Maybe it’s some combination of both.
Perhaps the hardest thing I learned was when I finally found the strength to hold Charlie, and discovered what so many other mothers who have given birth to dead babies know. Sometimes you, and only you, can hear them crying. Here was my baby, my little Charlie, as quiet and as still as a person can get, and yet, far above me, where the wall met the ceiling in the upper right hand corner of the room, there were his cries.
Charlie’s autopsy confirmed a final diagnosis of idiopathic non-immune hydrops fetalis. Beyond this, we never will truly know what ailed him. Chitiyat suspects it was a metabolic rate disorder, of which there are hundreds. To know which one is like looking for a needle in a haystack. In some ways, a full diagnosis is even more challenging as many of these conditions have yet to be named; it’s like looking for the needle that has yet to get lost.
I think of my little Charlie every day, often more than once and long into the night. At times, I force myself to wonder whether I made the right decision, but I always come back to the same feeling of peace. We had hoped, and still believe, that we set Charlie free, into a time of gentleness and stillness. I wished both upon him at his moment of birth, and have continued to do so every day since. I think to myself, be still my sweet Charlie. Still in birth, still in life yet still in my heart, always and forever.