**Before you read I do feel it’s necessary to put a warning. If you are sensitive, fearful, or easily triggered by traumatic pregnancy and birth stories please do not continue. It is not graphic in nature but I do share my personal story that some might be upset by.
The doctors explained what Treacher Collins was, to what degree they believed my son had it, and what it could possibly mean for delivery. I remember hearing cleft palate, small jaw, difficulty breathing, and tracheostomy. And I remember crying. That deep soul kind of crying where my very being wept with grief. I cried for myself. I cried for him. I cried for the dreams and hopes, plans, and desires I had unconsciously been holding onto so very tightly without even realizing it. And I cried because I was scared. Really scared.
Gathering their files and with those knowing smiles I had come to recognize as heartfelt regret, they left my room with a promise to return the following morning with more information and a plan of delivery for when the time came. I called my husband and told him I needed him. Right now. Right that moment. I needed him to tell me it was going to be okay. And so he threw some clothes in a bag and began that long and weary drive from Fort St. John to Vancouver that very evening. Next, I called my mom. Because even as a grown woman, a mother-to-be myself, I really needed my mom too.
After a night of tossing and turning, I awoke early to both my husband and my mother coming into the room. I felt like I could finally breathe again. Like, with them, I could face whatever was next. As promised, the doctors and specialists came back and we discussed what delivery would possibly look like with my son having Treacher Collins. A c-section with either intubation or a tracheostomy before he was fully removed. The doctors prepared us for an extensive NICU (neonatal intensive care unit) stay. Months most likely. And feeding tubes, and hearing aids, and surgery.
And as that fear began to creep back in I remember a quiet whisper, a gentle stirring, an encompassing knowledge that while this was scary and overwhelming and unknown to me, that God was not surprised. He was not scared. And that He loved my son. He loved him so fully and so completely. And despite everything, God was in control.
The weekend flew by. More doctors, more tests, more planning, and definitely more tears. They showed us the NICU and we got to see him hiccup while on an ultrasound. My husband and I decided on a name that weekend. Dominic. Dominic William. Tuesday morning rolled around and Mom was due to fly out at noon. Ed would drive her to the airport and head home. Me, encouraged from the visit, was determined the make it to 31 weeks pregnant, a significant developmental milestone the specialists said.
And all of a sudden, out of nowhere, my water broke. I was only 28 weeks pregnant. I remember looking down in total shock and then up at my husband and my mom and saying “it’s too soon.” They cried out to the nurses as I mouthed a silent prayer “Protect him, God. Keep him safe.” Nurses ran in and immediately strapped the monitor to me. They alerted the team of specialists and yet again, I was rolled away to labor and delivery.
This time the contractions didn’t stop. This time they couldn’t control it. This time, it was it. I can recall how white and cold the operating room was. Shivers ran through me as I tried to sit still as the anesthesiologist placed a spinal. Ed, wearing a full medical gown and cap, was escorted into the room and sat beside my head as they draped that blue curtain sheet across my chest. The room was swirling with activity and people. All there for me. All there for Dominic.
And then he was here. The specialists worked in a flurry as they tried to secure his airway before fully removing him from me and cutting the umbilical cord. They rushed him to their work area in the delivery room and doctors and nurses flocked to him while the OBGYN and team addressed my very urgent and rather rough caesarian.
I don’t have a concept of time when he was born but what simultaneously felt like minutes and forever, the head ENT specialist crossed the room to us and yet again, with that heartfelt regret, explained to us that they, despite every effort, would not be able to save him. That our son, my boy, my Dominic, would not make it. He had an unexpected and undiagnosed hole in his trachea down farther than what they were able to access through a tracheostomy. That each breath he took was not making it to his lungs. I saw tears roll down the doctor’s weary face and yet again, my world crashed.
They inclined my surgery bed and brought my sweet little 2lb 7oz bundle of beautiful baby boy to me and helped me hold him. The specialist stood over my shoulder and helped pump what little oxygen they could into Dominic as Ed and I stared into the face of our son for the very first time. He had beautiful wavy brown hair and the cutest little button nose. Our whole world right there wrapped snugly in a hospital blanket.
Dominic and I were eventually taken out of the surgery room and rolled into the NICU. But not to the NICU we expected. No. We were taken to a room in the NICU, with a big yellow door, that is reserved for babies who don’t have any time left. A room that shouldn’t exist. A room that is never right. A room that no parent, no person, ever wants to enter. Because as they wheeled me into that room, I knew I would be leaving it without my son.
We held him in that room for 2 hours. 2 hours that my strong little boy fought for. 2 hours that we stared in awe over him. 2 of the most horribly heartbreaking and wondrously beautiful hours I have ever and probably will ever experience. Because even though our time with Dominic was so very short, it was so very treasured. Every word, every whisper, every prayer, every song. Feeling his little body move, seeing his cute toes curl, and looking into his brown eyes that were just like his daddy’s. Those moments, those short tiny moments, those I will have forever.
And then he was gone. Wrapped up in my arms, he was in heaven. There are no words. No words that can describe what it feels like to lose your child. To hold your son as they die. It’s unthinkable. Unimaginable. The memory still pierces an unknown place in the depth of my very being. And I wept. I weep now. The kind of weeping where your soul shudders. The kind of weeping that doesn’t even have a sound.