On a cold and wet Saturday morning on February 21, 2015, we welcomed Marshall into our family. Our second son, he looked directly into his mother’s eyes as he was put into her arms for the first time. She held him close as he struggled to catch his first breaths.
As I looked at him, I suspected something was not quite as it should be. Labour is traumatic on newborns, but he looked so different from our first son. Something wasn’t quite right. The midwives took him to the nearest bathroom where they had set up a table to clean him up and check him out, and upon returning, they suggested an immediate visit to the hospital. The reason? Most acutely, his breathing was too laboured. Perhaps even more alarmingly? There appeared to be genetic variations from the norm.
This was a complete shock to us. Nothing had shown up on any of our ultrasounds. We had no family history of anything serious.
We were devastated by this news. I followed the midwife upstairs as she called our local hospital in order to prepare them for our arrival. My mind raced as I struggled to deal with this new information. At the hospital, he was placed in an incubator, and the assembled team rushed to his side, checking his vital signs, trying to get him to breath on his own.
I sat down in shock. With our first son, after he was born, we spent the night staring at him in wonder as he slept peacefully. Now, I wondered if we would ever bring him home.
The next day, the doctors made the decision to have Marshall transferred to the Hospital For Sick Children as they realized they needed more expertise to help him cope, both in the immediate sense as well as long-term. By the time I arrived at the Neonatal Intensive Care Unit of Sick Kids, Marshall and his mother had easily beaten me there in the ambulance. It took me a long time before I could muster the strength to walk into his NICU room. Once, many years ago, I had experienced the same feeling when my mother called to me from downstairs, yelling at me to lend a hand because my father had fallen off a high ladder in our backyard and had crawled back into the house in pain. I remember standing at the top of the stairs, too scared to move because I was afraid of what I was going to see, afraid that I wouldn’t be able to deal with it. Now I was faced with the same helpless feeling.
As I approached his little crib, I broke down for what seemed like the hundredth time in the past forty-eight hours. It was so hard to see my little newborn boy with so many tubes attached to him. He looked so scared.
Thank goodness for Canada’s health care system. At least we didn’t have to worry about that. The nurses were incredibly kind and patient despite working in a room full of beeping monitory, five crying babies, and the need to be vigilant and ready at all times to rush to the side of babies with serious health issues. Many times, Marshall’s nurses would pull up a chair and sit by me as I wept uncontrollably at his bedside. They listened to me as I expressed my fears and sadness. They comforted me and did everything in their power to help Marshall feel as comfortable as possible.
A few days into our stay, Dr. Christopher Forrest, head of plastic surgery, paid us a visit. He had a guess as to Marshall’s condition, and listened patiently as questions poured out of us. He had a distinct kindness in his eyes and did his best to allay our immediate fears. Impressively, he was able to articulate my questions for me as I stumbled over the words. He knew exactly what was on my mind. When I told him I just wished someone would tell me everything would be okay, he looked at me and softly said, “Everything is going to be okay.”
It’s five weeks after his birth, and we are back at the hospital for a third prolonged stay. This time, he couldn’t breath after catching the flu, which his brother and mother both caught as well, sparing (so far) the two cats and me. Dr. Forrest’s initial, informal diagnosis has been confirmed – Apert syndrome, a very rare genetic syndrome that affects approximately 1 in 100 000 live births. Statistically, he says that Marshall my be the only child born in Ontario this year with Apert syndrome. Despite its rarity, children from across the country with this condition come to Sick Kids, and Dr. Forrest has treated many of them. This is a small and welcome comfort.
I still cry often, although perhaps less often than before. A social worker here at the hospital explained that what I was going through was normal. I’m grieving. I’m grieving for the loss of certain ideas and dreams I might have had. I’m grieving for the shifting expectations I have for my child. I’m also in a great deal of fear for the future and the pain Marshall will be going through. Cranial surgeries. Facial surgeries. Surgeries on his hands. Possible hearing or vision problems. Possible intellectual disabilities.
This world is not made for people who are different. I’m also scared of what I will feel, say, or do the first time he gets unwelcome stares or is teased for looking different, for acting different, for being different. I have overwhelming feelings of protectiveness and anxiety as friends and family have started to visit Marshall for the first time. Recently, a friend visited with her little daughter. The little girl is absolutely gorgeous and stunning. She will spend the rest of her life hearing this. I wonder if Marshall will hear the same things. I cringe when someone tells me he is cute or beautiful. Even if I think so, are they just pitying us? Do they mean it? I don’t go on Facebook anymore. I don’t like feeling angry or sad when I see photos of everyone else’s perfectly healthy family. I should be happy for them, but those feelings aren’t there right now.
On the rare occasions during the two weeks we have been home with him, when both of our kids are asleep, those quiet times scare me. It is during those quiet times when my mind goes to dark places. It races months, years, and decades into the future, and it’s often the worst-case scenarios that enter my thoughts.
After taking a few weeks off work as Marshall was in the NICU, I returned to my job hoping the distraction would do me some good. During one quiet period as I sat in my room alone, I started Googling Marshall’s syndrome, which only ended up with me in a puddle of tears and struggling to pull myself together. I do not let myself go there anymore. I hold onto the words Dr. Forrest said to me. Everything will be okay.
For the last six days, I have spent my evening and nights in a room with Marshall. There has been little sleep, but don’t feel sorry for me – pity only makes me feel more despair. During those hours in the middle of night, I have spent a lot of time with him in my arms as I soothe him and rock him back to sleep. I lean in close to him and whisper my hopes and dreams for him. I won’t let them all die. Be happy, I tell him. Be a good person, I say. Have a wonderful and healthy life, I whisper to him as the rest of the city sleeps. I love you.