Simon’s conception was a joy-filled surprise. We, along with our 18-month-old twin girls, awaited his arrival with delight and gratitude. At our 19-week ultrasound, we learned there were challenges with his health. We went to a specialized clinic for a more detailed ultrasound—every measurement was taken, every detail studied. Based on the scan and bloodwork, the specialist suspected that Simon likely had Trisomy 21 (Down Syndrome).
As the weeks went by, we adjusted to our new reality. We read everything we could on Down Syndrome and prepared to parent a child with special needs. As the pregnancy progressed, I developed severe polyhydramnios (excessive amniotic fluid) because of a blockage in Simon’s intestine.
It became increasingly difficult to care for our twin toddlers. At my 36-week check-up, my OB suggested induction the next day. I was hesitant, as I didn’t want my personal discomfort to sway a decision that would impact Simon. The OB said it would make no difference for Simon, but continuing the pregnancy would have implications for my health.
The next morning, labour was induced and we spent the day anxiously awaiting Simon’s arrival. Roy went home to be with the twins for dinner, but shortly after his departure, Simon’s heart rate suddenly decreased and the OB recommended an emergency Caesarean. I felt overwhelmed at being alone during this drastic change in his condition. Thankfully, Roy got back to the hospital just in time for the surgery.
While it was clear that Simon would need surgery after birth, we had no reason to expect any birth complications. When Simon was born, he wasn’t breathing, and became severely bruised when touched. The OR team struggled to intubate him, but eventually he was stabilized and transported to the Children’s Hospital for surgery. Roy followed in his vehicle and I had to stay back for post-surgical recovery. It was really painful for our family to be separated.
The next day, we were told by the neonatologist that he suspected Simon had Trisomy 18 rather than Trisomy 21. He suggested that we consider our goals of care. Roy tried to find some resources on Trisomy 18, but, unlike Down Syndrome, there was little information available. In hindsight, we see God’s leading through that time. Several of the books we had read throughout the pregnancy, though not specific to Trisomy 18, had content about grief and loss, and we felt divinely prepared for the challenges ahead.
That evening, I had the privilege of visiting Simon and holding him for the first time. It required three nurses to lift Simon with his many leads out of his isolette and onto my chest, but it was so special to sit there holding him and singing to him. It was such a gift—he opened his eyes when I said his name. We have a photo of that moment.
Our twins came to meet Simon. Madeleine loved holding Simon’s hand and stroking his head. Emmeline was shy and intimidated by all the sights and sounds of the NICU, but she got comfortable enough to touch him. They sang the “Skinnamarinkydinkydink, I love you” song to him.
Our time in the NICU flew by. We lived so richly and fully with him in those days, trying to live a lifetime with him in a collection of moments. As the days wore on, he became weaker. We hadn’t yet received the genetic testing results, but we realized that he likely would not survive much longer. We started to prepare ourselves, started to grieve, and make funeral preparations. We cherished every moment with him, but also recognized that the moments were fleeting.
Then, we received confirmation of his Trisomy 18 diagnosis. We were offered a palliative care consultation and presented with options. We knew he was deteriorating; he could have a heart attack at any time. We thought it would be kindest to put him in God’s hands, and allow his life to run its course without the added suffering of invasive interventions. A friend came and took beautiful photographs of our family with Simon. The NICU reserved the entire unit for our extended family that afternoon to come say good-bye.
When we visited the hospital that evening, we came prepared to settle in for the short time we had left with our son. We brought items from home: a sheepskin rug, a lamp for dim lighting, books, baby blankets, bathrobes, anything we could think of to make this time special. I held him skin-to-skin throughout that night and we slept together. It was the most precious thing in the world, those hours of our hearts beating against each other.
As morning dawned, we decided the time had come to remove Simon’s ventilator. Around 6 am, we were transferred to a private room. With Simon’s lines and tubes removed, we could finally hold him unhindered. We cuddled him and passed him between us, not knowing how much time we still had.
We expected him to pass away quickly, but he continued breathing on his own. We sang to him and napped with him. We even took him for a walk around the hospital gardens, enjoying the morning sunshine with him. It was such a gift to see the rays of sunshine on his face.
Upon returning to our room, he declined very quickly. His breathing became laboured and irregular. He would stop breathing altogether for a few moments at a time. It was hard to watch and hear. All we could do was hold him and love him as he died. We requested some morphine to ease his pain. We could see his heart beating beneath his ribs, getting fainter and more irregular. And then he was gone.
Waiting on Sunrise 