My son was delivered by emergency c-section. The first glimpse I had of him, I noticed he was blue, and his skin was covered with deep purple spots. He wasn’t crying. The whole room was especially quiet. I thought the worst, my heart dropped, but then – he let out the weakest cry. Thank God, he was breathing.
I saw him only by glance as they rushed him to the NICU. I told my husband to stay with him and that I would be fine. My husband went, and I was alone, cut apart, medicated and anxiously terrified. The surgical team sewed me up and I was taken to my room. I willed my legs awake from the spinal tap, like Uma Thurman in Kill Bill, and then I physically dragged myself from my bed to a wheelchair to see him. I demanded a nurse take me to him. When I got there I could hardly see him under all the wires and tapes. He wasn’t even that small for being 7 weeks premature, weighing in at 6.3lbs, but they had no clue what was going on – so every possibly machine was hooked up.
The hospital I delivered at wasn’t set up to deal with his needs so he and my husband were sent by ambulance to the Stollery Children’s Hospital. I had to stay the night at the original hospital. Hearing other babies cry on the ward was like being stabbed in the heart. I didn’t sleep, I just cried. Dominic was across the city with my husband, my daughter was with my parents, and I was alone. Having a baby should be a time of joy and yet, all I felt was deep sadness.
The next morning I checked out against doctor’s orders. I still had hope it was just preemie issues, but my world was about to fall apart. We met with Neonatologists, radiologists, cardiac specialists and dermatologists. They told us that Dominic had an ultrasound and an X-ray, and they found an Arteriovenous Malformation in his liver, causing his heart to work overtime, which was causing it to go into high output cardiac failure. They had no clue what was going on with his skin. They thought maybe I had passed an infection, or that he had an extremely rare condition. They all said a full body MRI would give a clearer picture of what’s happening inside him, but warned us that if he had an AVM in his brain, things wouldn’t be good.
The MRI took 2 hours. He did have an AVM in his right temporal lobe, and it had hemorrhaged and he had suffered a stroke. The brain damage was significant. The neurologist told us he may never wake up and if he did we could be dealing with Cerebral palsy, mental deficits, blindness, deafness, etc. With everything else going on with his body, we didn’t know if he would survive or if he would have any quality of life. At that point, my husband and I went home and discussed what to do. We didn’t want to put his little body through all the pain it was in, we didn’t want him to suffer, so after crying for hours, we decided to put him onto palliative care the next day. I felt like all the air had been sucked out of the room. I couldn’t imagine life without him, but I didn’t want him to hurt.
The next day we talked with our neonatologist and he agreed that in that moment, it was the best choice for him. Even when several other doctors agreed, I felt immense guilt. I just wanted him to stay with me forever. We talked about what would happen when he passed and made plans. All I could think was I cannot make these choices – I wanted to run away. We decided to have photos taken with Now I Lay Me Down to Sleep, have him baptized, and see our son onward peacefully. We pulled all the plugs and we were expecting him to slowly fade away, but he didn’t – he kept fighting!
He fought hard and pushed through 3 nights. Either my husband or I stayed with him 24 hours a day. Our family was in survival mode and we struggled. We fought, my husband didn’t want to talk about it, but that’s all I could talk about. I was worried what would happen to us. But then we started leaning on each other and made a plan. It was working, we were surviving, all of us.
Dominic was out of acute danger but he needed time to heal his body. We had biopsies on his skin and found that his spots are just benign birthmarks – yet so many more than any of our doctors had seen before. The amount of birthmarks was shocking and the dermatologist was involved daily to make sure her diagnosis was correct. There was a possibility of it being an ever rarer condition, but a skin biopsy confirmed they were just birthmarks. We reached out to specialists across the world and none of them had seen a case like Dominic’s. He had many issues with the birthmarks; he would bleed from several of them daily and required transfusions. We also found out he had a brand new genetic mutation. He may be the only one in the world that has this mutation.
By March 5, he wasn’t making any further improvements and, in fact, his heart failure was getting worse. He was needing more medications, more oxygen support and the neonatology team agreed his best next step was to get his liver Arteriovenous Malformation embolized. On March 9, 2018, he was sent for surgery. This surgery had never been attempted on anyone so young before, ever, in the whole world. We were in uncharted territory. At that point he could have worsened and then been back on palliative care or it could have required a different surgery to fix any complications. With the doctor’s skill, it was a success! We were expecting to start weaning support in the next several days. But that didn’t happen. He needed even more heart medications, and they thought he was having silent seizures.
Unless Dominic was having a procedure, someone was holding him for about 19 hours every day. Between my day shifts, my husband’s evening shifts or my mom’s overnight shifts, Dominic was held all the time. He was so weak and fragile. I hate crying in front of others, but my face must have shown my worry. Our nurse crouched down next to me as I was holding Dominic against my chest, patting his bottom. ‘This is going to get better. Today is just a day, one of many, and many more to come. We will get through this,’ she calmly said. She will never know how much this comforted me, not because it was happening, but because someone else saw many more days ahead for Dominic. Someone else believed he was going to pull through. I can’t thank her enough.
His EKG didn’t show seizure activity, I breathed out, his chest ultrasound showed his heart function was stable, I breathed out a bit more, his liver ultrasound showed the surgery was still stable, a big deep breath out. Then the blood draws came back as positive for a MSSA infection, which can turn to meningitis very quick. With his brain damage it would have been a death sentence. He was put on the strongest antibiotics, and I spent another sleepless night just holding him and hoping against all odds that he would fight more.
By the next day the change in him was drastic. He became a new baby. Finally I could see his whole face! Almost 2 months later and I could finally kiss my baby’s face. We were one step closer to coming home.
Dominic continues to meet with his neurosurgeon, and we know he will have open brain surgery sometime this year. This is terrifying to us. We don’t know if this will cause more brain damage or if he will come out of it fine. As it gets closer, I get filled with more dread. Because of his brain damage he does have cerebral palsy, his core is extremely weak, he only recently mastered sitting on his own and is just starting to go on all fours to get into a crawl. It’s hilarious to see him get himself into positions and be surprised that he can do it.
He is going to need splints for his hand and his ankle as they turn in towards his body. He also has some vision loss, we aren’t sure how bad that is but we know his left field vision is compromised. His spots still bleed, we really don’t have a solution for that, there is a leading specialist in Europe that would see him, but it’s not financially viable for our family so we are hoping with time he will heal. We are also trying different medications and ointments for this issue, but still we have more ER visits. His heart is still big but the cardiologist said that unless you were a heart doctor you wouldn’t know he had issues.
This last year has been so very hard, I can’t even describe it. Many days I just wanted to run away, I often felt like I am not adult enough to deal with this, but we mustered through. Our family helped us in so many ways, I don’t think we could’ve survived without them. My doctor is sure that I have PTSD from this year, but I can’t deal with that right now, my family needs me.
I think once the brain surgery is done, I will finally be able to really breath out. Our family will be done with that chapter and we can finally work for the future.”