“Becoming a mother was not an easy task for me. Having children didn’t feel like a natural part of my life for most of my existence. I was too self-centered to be a mother. I lacked a maternal instinct. Life taught me some painful lessons as I grew older, and my heart craved something greater. I felt like the universe was punishing me after two early miscarriages in 2012 and 2013. It was entirely my fault that these youngsters perished. The fact that I thought I didn’t want children contributed to the deaths of these children. I let go of my remorse and resolved to try once again.
I found out I was pregnant in early 2016. This had to be it — isn’t it said that the third time’s the charm? My pregnancy went on without a hitch until I was 20 weeks old. I didn’t gain much weight, I didn’t get morning sickness, and felt fantastic overall. We received a conventional anatomy scan at 20 weeks. My husband could not accompany me, but I didn’t give it much thought. Wasn’t the scan merely a formality to determine gender? My mother accompanied me. I recall staring at the ultrasound technician on the screen. We giggled and chatted, and the technician commented on how active and busy the baby was. Suddenly, the tone of the conversation shifted. The technician grew deafeningly quiet, and she no longer looked me in the eyes. Her eyes were welling up with tears, which I could see. After what felt like a lifetime, a doctor entered the room and said seven words that completely changed my life. ‘There’s a problem with the baby’s heart,’ says the doctor. Fear, anguish, suspicion, and blame for guilt. So many feelings, so much skepticism. Nothing is supposed to go wrong now that I’ve made it past the 12-week safe zone.’
We visited with a genetic counselor a week later. Charity is a name I’ll never forget. She went over all of the different ailments that our kid could have. She questioned my husband and me about illnesses that ran in our family, unexpected deaths, and any memories of babies in our family dying before or shortly after birth. It was exhausting. The entire time, I was fighting back the tears. Our baby would most certainly die, according to Charity. ‘Oh, and congratulations on your kid,’ Charity says at the end of this long and mentally draining appointment. Congratulations on the birth of our child? Are you referring to the one you said was going to die? I sprinted out of that room. I burst out laughing the moment the elevator doors shut behind me. I couldn’t speak, think, or breathe for the life of me. What was going on here? What did our child do to earn such a fate? Wasn’t it enough that we’d already been through so much? Later that day, our baby (a young boy) was officially diagnosed with Hypoplastic Left Cardiac Syndrome, a severe congenital heart abnormality (HLHS). This meant he’d be born with only half of a heart. We were given three options: terminate the pregnancy, wait until the kid was born, attempt three heart procedures with the risk of later needing a heart transplant, or bring our son into the world and wait for him to die.
I couldn’t bring myself to terminate the pregnancy because I hoped that the doctors were mistaken. We decided to schedule the operation because I couldn’t stand by and watch my baby die without giving him a shot. Our youngster had a good chance of surviving the initial surgery. If he succeeds, he will lead a relatively everyday existence (he would have a few more doctors visits than most kids). The rest of my pregnancy was uncomplicated, save from regular appointments to a pediatric cardiologist. Our son was developing normally and growing at a normal rate. Despite everything, his broken heart continued to beat.
Following our son’s birth, we decided to travel to Edmonton for his first surgery. The nursery was completed. ‘Every child is a narrative still to be told,’ I discovered the definitive statement to hang below the cot. We went out and bought a car seat, as is customary. We plotted, we wept, and we hoped for a miracle.
Our son Daniel Gabriel was born through an emergency c-section at 42 weeks gestation on December 15, 2016, following 17 hours of labor. His heart rate had fallen quickly during childbirth, and he was born unconscious. He was stabilized, and three hours after his birth, I was able to see him for the first time. I was wheeled up to him, and we had our first face-to-face meeting. He was breathtakingly attractive. He had black, curly hair like mine, as well as my nose and his father’s forehead. He was petite, but he was flawless. He was connected to many machines and had cables all over his body. Still, he appeared to be any other infant.
We held him for the first time about 24 hours after he was born. When his father embraced him, he opened his eyes. His eyes were beautiful, dark grey, and knowing beyond his years. I experienced an odd sensation while holding him…it was as if a piece of me was missing, but he was still in my arms.
We were told that heart surgery was no longer a possibility after checking Daniel’s heart and considering the other aspects of his traumatic delivery. We didn’t have many options. Daniel was in a bad way. He also had Total Anomalous Pulmonary Venous Return (TAPVR), a disorder in which the arteries that return oxygen-rich blood from the lungs to the heart are wrongly connected. We had no choice but to make him comfortable and wait for him to pass away. I couldn’t think, couldn’t breathe, and it felt like I was seeing Daniel’s life play out in a nightmare.
After attempting to sleep for a few hours the morning of December 16, we rushed to the NICU. We walked into a swarm of people encircling Daniel. Nurses, doctors, and specialists are all available. They had summoned a priest for us so that Daniel could be baptized. I was well aware that we didn’t have much time. We saw our son getting baptized while my husband held me up. Daniel didn’t make a sound, didn’t move, and didn’t even open his eyes. We contacted our loved ones.
I ultimately untangle Daniel from everything after more than a day. I recall how delicate and light he was in my arms. I concentrated on remembering his facial features. We took pictures, and he met members of his family. I couldn’t cry for some reason. I recall that a single tear escaped my eye and landed on his face. I understand now that I was stunned. I was emotionless. I tried to feel it but was unable to do so. Daniel died in my arms 33 hours after he was born. He was gone as swiftly as he appeared. We left him too soon and never took a single video; if I could change anything about those two days, it would be those two things, aside from the obvious.
My goal is to keep Daniel’s memory alive. I have a cause to talk about him now that I’ve shared his tale. It gives me the courage to tackle the next day. His brief existence had a significant impact on mine. In his honor, we’ve made donations, performed random acts of kindness, and aided other heart kids. But none of it will bring him back – it’s just a way for me to physically express my love for him. It makes him feel genuine and alive, and that, to me, is priceless. Life will always be full of “what ifs” and “whys,” but Daniel’s memory will go on as long as I do.
During Daniel’s memorial service, the officiant told a story about waterbugs and dragonflies. Because of the hope they hold, the dragonfly is my symbol for Daniel.
‘The next person who climbs the lily stalk will return and explain where he or she went and why.’ The dragonfly darted down without thinking. He slammed on the water’s surface and bounced away. He couldn’t go into the water now that he was a dragonfly… He exclaimed, ‘I can’t return!’ ‘At the very least, I tried.’ But I’m afraid I won’t be able to maintain my word. Even if I could go back in time, no one would recognize me in my new physique. I guess I’ll have to wait until they turn into dragonflies as well. Then they’ll know what happened to me and where I ended up.’
And the dragonfly flew happily away into its new world of sun and air…’
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