From the beginning…
By: Oliver'S Odyssey
Tags: Baby, Birth, Newborn, Parenting, Medical

I’ve been staring at this blank page for days, not knowing where to start. I guess I should start by saying, I’m here to tell the story of my son, Oliver. We found out last year, in 2020, when Oliver was 10, that he suffered a stroke either in-utero, during or shortly after his birth. Since it was such a long time ago, it is impossible to know exactly when it happened. Or why. Those unknowns will haunt me forever. What we do know is, the stroke damaged the left side of his cerebellum. We also know that he went undiagnosed, and misdiagnosed, for far too long. The effect this has had on Oliver is emotional/behavioral issues, delayed and difficulty with communication, learning disabilities, seizures, anxiety and a cornucopia of physical issues, some of which are still coming to light. I believe Oliver’s story is unique and if I can help one other frustrated, confused parent out there figure out what is going on with their child, to support them and encourage them to ask questions, to press doctors for testing, to follow their gut feelings, then all these years of Oliver’s struggle, my family’s struggle, might have some meaning. So here it goes, from the beginning.

Oliver arrived just after midnight on February 20, 2010. My pregnancy was relatively normal and uneventful. I should mention that in my early twenties I was diagnosed with Graves Disease, which was completely under control before I got pregnant. But because of that, I was monitored a little more closely, and had more ultrasounds than I would have had normally. At my last doctors appointment, two days before Oliver would arrive, my doctor casually mentioned that there was a little more amniotic fluid in my belly than normal and that sometimes that just happens. In the early morning hours of February 19th, my water broke, waking both myself and my husband out of a deep sleep. Off to the hospital we went! The entire day was so exciting, despite the pain of the contractions. I couldn’t wait to meet our little boy.

I started pushing, and from what I can remember, every time I pushed, Oliver’s heart rate went down. The doctor didn’t seem too concerned. I continued to push for about two hours. The doctor let me “rest” for an hour and then try pushing again before performing a C-section. (For those of you who are of the opposite sex, or who haven’t had children, I put the word rest in quotes because in reality it felt like I was holding a giant, painful poop in for about an hour!) In total, I was pushing/waiting for about 5 hours. When they finally pulled Oliver out of my belly, he was not crying, he was barely breathing and was ghost white. I had watched a lot of TLC birth and baby TV shows leading up to this, so I knew that when a baby comes out and is not crying, that something is wrong. They whisked Oliver away to the NICU immediately. I had to call to the nurse to let me see him for a split second before she took him away. Josh followed Oliver to the NICU, but the doctors wouldn’t let him inside, so Josh waited an agonizing hour in the hallway, not knowing if Oliver was alive or dead.

I was still in the operating room, getting sewn up and in a drug induced haze. I have little memory of the time elapsed here other than eventually I ended up in a room on the maternity ward around 5:30 in the morning. By this time, Josh had been able to see Oliver. He was alive. The doctors said he pinked up quickly and he was doing well.

The next four days were a bit of a blur. We were first time parents, struggling to accept that the birth was not that blissful, love-filled, happy moment that you see on TV. That our son was separated from us immediately, and was still not allowed to be with us in the hospital. That we were new parents (holy crap) who had no idea what we were doing (seriously, I had to ask the nurse in the NICU to show me how to change his diaper), which made us completely at the mercy of the doctors at the hospital. I trusted those doctors. I mean, we were at a hospital in a major metropolitan city with a good reputation.

By day three, we thought that Oliver would finally join us in my hospital room, but he developed jaundice and had to be kept under the lights. All I wanted to do was to take care of my newborn baby boy, but I had to rely on the nurses in the NICU to do what I wished I was doing. If I couldn’t physically take care of Oliver, I would learn about something that might help once I could. The nurses recommended that I attend the lactation class that was held on the maternity floor a couple of times a day. My emotions were already through the roof due to those post-pregnancy hormones, so it didn’t help when the woman running the class asked me why I didn’t have my baby with me. I swear I’ve never ugly-cried harder in public than at that moment. She tried to apologize, but I just wanted to get out of that room as quickly as possible. I’ve never forgiven that lady. Seriously.

Day four, towards the end of the day, Oliver was finally allowed to join us in my hospital room, just before we were about to go home. Josh had to leave the hospital to go get the car. There I was, alone in the room with this tiny baby I had no idea what to do with. I felt scared and overwhelmed. I told him to hurry. He did and we were on our way home, where my Mother-In-Law and her sister were waiting to greet us.

On our car ride, Oliver started crying immediately and continued to cry all the way home. I sat in the back with Oliver and asked Josh what to do. He said he didn’t know, but he turned up the Beatles on the radio and that seemed to calm Oliver a bit. This was the first of many warning signs that something was not right. Something had gone wrong, but we wouldn’t know what until quite far into the future.