John was born full-term and seemingly healthy. On his second day of life, I noticed some strange, rhythmic jerking of his right arm. I described it to the pediatrician on call, who said that newborns do funny things and I shouldn't worry about it. I can now look back at videos of those newborn days and identify seizures.
Unaware, we took John home and began the monumental adjustment to parenthood. We continued to notice strange movements. Sometimes John would wake up out of a sound sleep, jerk his right arm for a few seconds, and then go back to sleep. Sometimes his entire body would suddenly curl up into a stiff ball for a few seconds while his eyes would deviate to the right, and then he would relax. One time he stopped nursing, shook his right arm for about 10 seconds, and then went back to nursing. One doctor actually saw him have an episode and dismissed it as nothing serious. But John's episodes became more frequent and obvious; a few times they were triggered by flash photographs.
When John was 8 days old, we took him to the emergency room. Those hours in the emergency room were a nightmare. John continued to have episodes, which became more frequent and longer even as we sat there. After what seemed like an eternity, he received a loading dose of Phenobarbital which, I was promised, would stop the seizures. We also had our first painful introduction to infant blood draws, as the staff tried again and again to draw blood for tests. I think that that was the moment I first felt the full depth of my love for my new baby. He was shrieking in pain and I could not help him; I had to reconcile his pain with the knowledge that I was doing what was best for him. This is a profound experience that has been given to me countless times over the course of my young child's life and one for which I am grateful, though I hate it every time.
John was admitted to the NICU some time after midnight. They placed him in an isolation room since they didn't know yet why he was having seizures, on a cozy warmer where he could relax and sleep. I wanted to stay with him but I knew that for everyone's sake I needed to rest, so I went home for a few hours. Leaving my precious newborn baby in the NICU--not knowing why he was having seizures (did he have a brain tumor? etc.), not knowing whether there would be someone to comfort him when he cried or even if he would be alive the next morning--was the hardest thing I have ever had to do. Seeing John alive, awake, and drinking from a bottle in the nurse's arms when I arrived early the next morning was my greatest relief. I was to ride this roller coaster for the next two weeks. Sometimes I would leave him at night only to return a few hours later, because I missed him and wanted to make sure he was alright. Every morning I was there when he woke up, and it was on one such morning when he was just a few weeks old that he gave me his first smile.
The neurology fellow covering the NICU that first weekend saw a video and confirmed that John's episodes were seizures. John soon had an EEG, which showed seizure spikes but no active seizures, so we thought his seizures were controlled by the Phenobarbital. He had an MRI, which looked normal; it was a relief that he didn't have a brain tumor or major malformation, but we were disappointed not to have an answer. He also had many tests for infections and genetic conditions that might cause neonatal seizures, all of which came back normal. By the end of that weekend, we had learned only that our ten-day-old baby had seizures of unknown origin.
It was at this early stage that we learned one of the great lessons of being a special needs parent: trust your instincts. Although John's long seizures seemed to be controlled with Phenobarbital, he still had episodes in which his body would curl up into a ball for a few seconds while his eyes deviated to the right, and then he would relax. We were concerned that they were seizures, yet when we described them to the doctors they inevitably dismissed them. At one point, an entire team of doctors watched an episode, waved their hands and said it was normal. But we continued to worry, and finally the doctors agreed to do another EEG.
The EEG showed that the doctors were wrong: John was still having seizures. Thus began the medication roller coaster that would be part of our life for the next year and is the subject of the next section.
It was hard to accept that my baby was sick when he looked and acted so healthy. Born weighing 8 1/2 lbs., he was gigantic compared to all the other babies (mostly preemies) in the NICU. At just a few weeks old he was smiling, cooing, and giggling for the doctors and staff. I kept saying to my family, "But he is so beautiful and perfect! How can this be happening?"
Meanwhile, I felt like a zombie. I was recovering from a c-section, trying to adjust to being a mother, pumping breastmilk eight times a day, trying to bond with my seizing baby, wondering how we would get insurance for our sick newborn (that is a story too long to tell here, but suffice it to say that insurance was a huge stressor), and feeling like the entire world was crashing down on me. Even though I knew in my mind that my child was probably not dying, I went through all the emotions of grieving his loss. I was numb, angry, and desperate. I asked the social worker in the NICU to arrange some professional counseling for me because I felt totally unable to cope with what was happening to me and my family. That counseling helped me make it through, but even as I write this I am realizing that I still carry some of the grief.
Continue reading on the Medications page for the rest of the story of our 2-week stay in the NICU.
