Alyssa Rae Johnson, Pregnancy and Birth

Today, I am remembering. It’s Alyssa Rae’s birthday week, and I’m bound to be crying anyway, so let me pour it out to you. Let me pour it all out and please, let my words inspire reflection and giving. It’s all for a fundraising flash mob of remembrance, love and hope. Donate a crisp 20 on a crisp fall day…today. Spread the word! If you are new to this thread of posts, for a better understanding, start with yesterday’s post.

Twenty years ago today, I was in a grip of fear and uncertainty that I was determined to pry loose. When you are pregnant, the word ‘possibility’ infuses your every breath and thought. After all, you are in creative mode, to the very depths of your being. How can that be anything but positive? To be presented with evidence that all is not well when for seven blissful months you were over the moon with dreams and excitement, it takes time to reconcile.

Maybe it takes 20 years. 

First, for those who haven’t met me and Bruce, a bit of context. In 1998, we were fresh off the heels of an odyssey on two wheels. We had met in the Arctic when I was on a 2-month canoe expedition and he was at the apex of a long motorcycle journey. Both journalists, we got to know each other via snail mail, then joined dreams to adventure from north to south, with Bruce’s chosen route (Inuvik, NT to Ushuaia, Argentina,) and my chosen mode of transportation, bicycles. Halfway through that trip, we got engaged.

There was no doubt in our minds that if we could weather the challenges of 24/7 togetherness and support each other through cholera, dysentery and a million daily decisions, we would be able to pedal past the rest of life’s more banal ups and downs with relative ease. Nothing stopped our progress for long and before we knew it, we were back home surrounded by family and friends, tying the knot in the town of Lutsen, Minnesota and celebrating on the shores of Lake Superior. While planning that wedding, I trained and ran a marathon, Bruce studied for his real estate exams and our families met. It was truly an awesome, healthy, joy-filled time of our lives.

After the bike trip and the wedding, we decided to start our new life together in Wasaga Beach, Ontario, mainly because we had no money and needed a place to live. Bruce’s parents had a separate basement apartment and had offered it to us, while they were between tenants.  It was in that cute little apartment, at the end of March 1998, when a pregnancy test stick turned pink-for-positive. Turns out I was 5 weeks pregnant, which means we conceived Alyssa just after my 30th birthday.

We shared our news with our families on Easter Sunday. Such an exciting spring, with a baby on the way! We had a core list of friends that we shared the news of our pregnancy with by email, and I am thankful we have many of them printed out, as a reminder of how elated we were to be growing our family…and the outpouring of support and love during the ups and downs that would follow.

About 6 months later, we were brand new homeowners of a riverfront cottage in dire need of renovation. With the baby’s due date being November 28, there was a time crunch to make this little house a snug home for our new addition. Bruce’s brother, nephews and our best friends were incredible, helping us rip, tear down to the studs, insulate, re-drywall, jack up and level floors and replace beams. His parents were rocks of support for us and invited us to share countless meals. I was limited to scraping. Multiple layers of wallpaper, glued-down old cat-pee-soaked carpet underpad, old kitchen tiles, you name it, I scraped it, because I was getting to the point where energy was waning.

Because I was new to Canada and awaiting permanent residency status, I didn’t have health care. Throughout the spring and summer, I had been jumping through multiple hoops to get my immigration status to the point where I could receive my OHIP (Ontario Health Insurance) card. At the time, that little card would be my ticket to free prenatal care. I had passed the medical exam, filled out the paperwork, received a “fulfillment in principle” promise and the date when I would be “Landed” as a permanent resident.

Meanwhile, a friend of a friend who was a new local female doctor generously took me on as a patient. Dr. Monte and her husband Dr. Singh would be with us all the way through to delivery and beyond. Meeting Myrna and Amar was probably one of the luckiest moments of my new life in Canada. To this day, I feel they are earthly angels. They are incredibly caring, knowledgeable, beautiful people. At each appointment, my blood pressure was excellent and the baby’s heart rate was strong and steady. Early on, I had so much energy I was biking across town to do yoga. Bruce was newly-licensed as a real estate sales rep and I focussed on assisting with marketing.  I was biking up and down neighbourhoods where Bruce had his shiny new RE/MAX of Wasaga Beach For Sale signs up, passing out the “Just Listed News” pamphlets I had created. I was loving Wasaga Beach, with its forest trails, beach boardwalks and small-town friendliness.

Together with Dr. Monte, we decided that it would be ok to wait for our first ultrasound, rather than pay a huge fee. In those days, you assumed if you made it past 3 months, you were golden. I was to receive my OHIP member status on October 31st so we booked our first ultrasound at Collingwood General & Marine Hospital the following Monday, November 2nd.

Frankly, there is just no way to sugarcoat what our first ultrasound was like. The only way I can forgive the tech is that he had never seen anything like it, and wasn’t trained in bedside manner. Maybe he was new. Or tired. Or scared for us. But my God, we were first-time expectant parents! We thought we were going to find out if it was a boy or girl, make sure he or she was getting in position for delivery. The ultrasound took forever, but we figured that was normal. The tech kept adding some more ice-cold gel to the wand and going back and forth, at a Zamboni pace over my giant belly, clicking and typing, measuring and switching screens. Breaking an awkward silence, Bruce asked: “so…got all the fingers and toes?” The tech contorted his face into a blank expression and told us he couldn’t share ultrasound findings. He turned away, mumbled our doctor would be in touch, and left the room.

Driving home, we were paged to come in to speak with Dr. Monte. I said to Bruce, “Whatever it is, promise me, please promise me, you won’t try to be strong for me.”  If we were going to be blasted with bad news, I desperately wanted someone to be in the puddle with me.  He promised me not to be strong. Haha. When Dr. Monte closed the door behind her and welled up with tears, my ears filled with the cotton of shock and denial. I could see her lips move, could see her point to a paragraph in a gigantic medical encyclopedia, could make out a word or two. “Orillia.” “SickKids.” “Mt. Sinai.”

From that moment on, everything happened fast. Never again would I share a carefree moment singing or reading to my growing baby, wondering only who she would look like, gleefully feeling that inner tickle as our baby’s feet rolled across my tummy. What followed instead: consultations, diagnostics, tests, and more tests. Tearful talks with more doctors. Flow charts that said if this, then that. These were dark and confusing times.

At our second, more revealing ultrasound at Orillia Soldiers’ Memorial Hospital, it was confirmed that our baby indeed faced numerous complications. The fact that some organs were outside of the body, like a giant hernia contained in a sac, was the least of the concerns. New words for new parents. Not words like lullaby, diaper genie, baby shower (I had cancelled the one my friends had sweetly scheduled).

Omphalocele. Ectopia Cordis. Hypoplastic. It was all too much. Too cold, too clinical.

We had to know the gender of our baby before we carried on. And so we found out: a girl! That brought us happiness! We knew right away that her name was Alyssa. We knew too, that her middle name would be Rae, as it was also feisty Grandma Johnson’s middle name.

Knowing her name, we could carry forward, and asked friends in the medical field if they concurred with everything the best children’s hospital in Canada had told us. Still shell-shocked, we rallied some key individuals for advocacy and moral support. Sisters who were nurses, distant friends who were surgeons and doctors. We wanted everyone’s take, translation and explanation. Thanks to sister Cathy’s repetition of the translations, it could finally sink in that her heart was not protected by her ribs but instead was partially at the surface and would need to be surgically covered with skin, her chest cavity was small, they weren’t sure if she had a diaphragm and even if she did, her lungs may be too small to function.

We were told that a long-needle aspiration, called amniocentesis, would provide a more thorough prognosis. Then we’d know if she had other challenges that went as deep as chromosomes. Two days later, after Bruce’s 34th birthday, we took our first of many trips to Toronto, with stops at Mt. Sinai Hospital and SickKids Hospital. The amniocentesis was gruelling, so painful and scary, but our spirits were lifted to learn that the results were good. No chromosomal abnormalities at all!

An internal echocardiogram also showed that Alyssa’s heart was anatomically perfect and strong. It was just in the wrong place. We could tell by the way the doctors shared the news that this was very promising indeed. I would deliver our Alyssa Rae by C-Section the following week at 38 weeks gestation, at Toronto’s Mt. Sinai Hospital, which connects to SickKids via a tunnel.

After we had processed all the theories and information as best we could, we realized that in spite of an uncertain future, right now, Alyssa was safe. I was safe. I didn’t feel any different, physically. Her heart rate was still perfect. The contrast of real-time (me and Bruce and our happy baby) vs storytime (the doctors) made me feel like the whole thing was a nightmare. Surely soon I would wake up.

Wow, I had no idea this would be so long. If you’ve gotten this far with me, you must know us, or maybe you’re a parent or just a very patient reader. Thank you for your interest. You know where this is going, you know Alyssa Rae doesn’t make it. I hope you’re not pregnant and starting to freak out. Omphalocele is very very rare, it’s random and no matter what, you’re going to be ok. I just had to interject that!

You might assume, knowing that we are all about raising funds to support children’s hospitals, that the system must have been so perfect, and we are just so grateful for everything that we want to give back. I’m here to tell you that 20 years ago, the system was not all roses and sunshine. But even the toughest times have a purpose, in hindsight. And in contrast to the toughest moments, there were so many moments of hilarity, humour and levity. The SickKids doctors and nurses that we were introduced to before Alyssa even emerged were incredible. Seriously so compassionate and thorough, anticipating our questions and reassuring us. SickKids is a teaching hospital, so there is never a lack of interns asking questions. There was a lot of conversation, which helped us figure out what our questions were. SickKids staff even found a family that we could talk to, whose child survived omphalocele and was doing well. 

On Tuesday morning of November 17th, 1998, we gathered with our closest family members and Bruce and I prepped for the surgical theatre. It was finally time for my spinal epidural. These photos really tell a story. Here I am, reassuring Bruce with a glance that I was really fine, and not to worry, during my C-section. We were about to meet Alyssa! I didn’t care what the doctors thought, this was our daughter. She was going to be fine. It’s like I wanted to beam out hope and trumpet joy. A new baby was coming and everyone should really just chill out.

According to Bruce, I was amazing. But all I had to do was lay there and talk to the most beautiful anesthesiologist on the planet. She held eye contact with me and was so in tune with my breathing, with my fears, with my every heartbeat and dip of blood pressure. I felt held. I wish I knew her name, I would write her a letter of thanks. But back to Bruce. HE was the amazing one. He had to stand there, all gowned up, and witness the unimaginable. He stroked my forehead and reassured me as the all-female surgical team expertly made a “bikini line” incision, then pulled our baby out, first head, then body. He saw them quickly checking my intestines for nicks, inch by inch, as you’d do for a flat bicycle inner tube. He didn’t pass out. He didn’t puddle. Anyway, this was no time or place to be strong or not strong.

We were tender and happy, the surgical team was casual and confident, everyone just was who they were. I don’t remember the next part, it was chaotic, but the omphalocele was wrapped in medical cellophane and Bruce recalls Alyssa’s bleating cry being stifled by a breathing tube. He describes that moment, and really the whole story is so beautifully told by Bruce, I cry when I read those newsletters, even today.

SHE DID IT! Alyssa Rae Johnson came into the world at 9:03 a.m. Tuesday November 17, 1998. And, like her parents, she savors a challenge and so entered our fine world with not a whimper but a BANG. During Mary’s C-section, while I watched, stunned, as the team of doctors pulled her head out, followed by her shoulders, torso and legs, Alyssa chose to let the world know that she intended to fight the grim prognosis of the various doctors by screaming at the top of her little lungs—those same lungs that we were worried may not work. She cried out as the transport team whisked her off into the next room and she kept crying until they put the breathing tube down her throat. She hasn’t made a sound since then, as the tube robs her vocal cords of their precious right to holler. But we have a girl. A brave, courageous, fight-filled wonderful GIRL, with all of her parts intact (though some of them happened to be outside of her in what turned out to be a smaller-than-anticipated omphalocele!). She has astounded the doctors at Sick Kids Hospital and hopefully will continue to astound those around her for at least the next 123 years! A girl… a beautiful little girl. Mary and I are the proud parents of a baby girl with downy blonde hair, blue eyes, a cute button nose and an attitude!

~Bruce, first time Dad

Fleeting, gut-wrenching. I wanted to hold her but knew I couldn’t. All I could see was her beauty, all I wanted to do was communicate a warm welcome to her. To be a calming presence. To the team of doctors, this was a very very sick baby in need of saving and an adult patient who needed to be closed up and brought to recovery. Bruce was torn between these two scenarios. What was his role? His heart was divided, and I can only imagine his turmoil once Alyssa was transported by tunnel from Mt. Sinai to the Neonatal Intensive Care Unit (NICU) at SickKids and I was fully checked in with all the other new Moms in the C-section recovery floor (I’m sure it has another name, but let’s just call it Hell). For both of us, there were visiting hours, and this was before cell phones and texting. Bruce would run back to me to report how Alyssa was doing, but I was on heavy pain meds and couldn’t sit up or get up.

I did not have a private room. I was put in a room with a new Mom of a healthy baby, with a mini-family party going on. There was squealing laughter, balloons, and praise for how well she did. She just “couldn’t wait to get out of there”…well I just couldn’t wait for her to get out of there either. It wasn’t their fault. How would they have known who was behind the curtain, cold tears rolling silently down hot cheeks? My empty arms made my heart ache and I was deliriously desperate for an update. That night, a nurse turned on some kind of required video for new moms in the C-section ward: a how-to for breastfeeding. How to hold your baby so she latches on well, how to care for cracked nipples from all that nursing. Reassurance that you can pump and store your milk, so that your husband can share in the joy of feeding your child, too. Oh. My. God. Why did they think I needed a breastfeeding tutorial? All I needed was Bruce, Alyssa and more pain meds. It was the middle of the night and I was hitting the call button. Nobody came. I cried out: “Somebody?” “Hello?” until finally I stopped feeling sorry for myself and got mad. Rage propelled me out of bed, to the nurse’s station where they were sitting around drinking coffee. They looked at me and said, “Oh do you need something?”

That did it. This Mama Bear felt her claws coming out. I was getting the hell out of dodge. I needed to be at SickKids with my husband and baby and the Universe was certainly conspiring to motivate my lightning speed recovery.

To read more, see Part 2, Alyssa’s 20 days on Earth