Today is an anniversary of sorts for me. I am very superstitious, and as a traditional Conservative Jew I believe in kenahoras (evil eyes) so I was very hesitant to even write this. However, I consider myself lucky to have this platform whereby I can reach so many people and in light of recent events, if I can make someone’s life a little better than mine was on March 6, 2011, I would be honored to do so.
One year ago today my daughter, Abigail, then 6 months old, was admitted into Cohen’s Children’s Hospital. The weeks leading up to her eventual admission were full of unease and confusion, and I never imagined that I would get to a point where my daughter was actually hospitalized.
The events as I recall them (and I admit, they are hazy because I let my brain forget them) started in late February 2011 upon our return from a trip to Los Angeles. Abigail was just an amazing baby, meeting all relevant milestones early and she had such a delightful and endearing personality. I remember that on the day we returned from our trip, she belly laughed as I “zirbirted” her belly, and then — she went dark. I didn’t see a laugh or a smile for what would end up being two weeks. Initially, I attributed her change in personality to acid reflux. She was either content or crying, but never happy, and as I had just started giving her solid food, she would arch her back whenever she sitting upright. It wasn’t just a slight arching, mind you, she propelled herself backwards, and would often times hurt herself and me as she hit my clavicle or sternum. My father, a Pediatrician, noticed the arching and was very displeased with it. I brushed it off as discomfort from reflux, and said I would take her to a Pulmonologist and ENT to get her checked out to see just how severe her reflux was.
On February 25, she was diagnosed with severe reflux after a series of tests including a barium swallow, a throat scoping, and chest x-rays. She was prescribed a pretty high dose of medication and I was hoping I would see her happier shortly. On the Tuesday prior to March 6, I was out to lunch with my mother and Abby, and while holding Abby, facing me, she bashed her face into my chest. What was alarming about it more than anything else was that it seemed completely involuntary, almost as if she was possessed. My mother worries enough for 12 people, so I “assured” her that it was just a “thing” she was trying out, and would learn she didn’t like.
Then came the weird stuff — for a child who hadn’t fallen asleep on me since she was a few weeks old, Abby started to ONLY go to sleep on me and when she did, as she was drifting, she would kind of “jolt” from the waist-up a few times. It was very scary. As the week progressed, she jolting not only continued, but became more severe. Unfortunately, she only did this when I was alone with her and I couldn’t explain to anyone else with clarity what was happening. I began to be alarmed as they got more intense, and by that Friday, I had called my dad close to tears, saying that the medication wasn’t working and that she was having terrible stomach spasms. I also voiced, for the first time, that I was unhappy with her sociability and thought she might be autistic. It was a very hard thing for me to say, but I knew that early action was key, and so I just put it out there. My parents said they had their own concerns and that we would go for a neuro-consult the next week.
Sunday, March 6, 2011, I remember my son Benjamin had a fever. Interestingly, my daughter had smiled at me that morning and I was elated to see that she may finally be feeling better. I didn’t want to risk her catching whatever my son had, ESPECIALLY in light of her new found comfort, so I took her and my oldest to my parent’s house while Ben rested at home with my husband. I delighted in telling my parents how Abby had smiled that morning, and although my father was very happy to hear that, he still wanted her to be checked out because he still didn’t like her interactions. I agreed thinking that everything would be fine. Abby was swatting at some toys on a play mat and was rolling around tired, just as I was sitting down at the kitchen table to have some coffee with my parents. She started to drift off in my arms when all of a sudden, and a lot of it is a blur, my mother started screaming – I looked down in my arms as Abby started spasming again, harder than she ever had, and this time, her eyes rolled into the back of her head. I was almost relieved to have witnesses to what she was doing, even though this was worse than they had ever been. Just then, my father said very matter-of-factly, “Jessica, we have to get her over to the hospital. She is having seizures.”
In a flash, we were out the door; my mother was taking my son back to my house and would watch my boys while my husband would meet us at the hospital. We went through the Emergency Room, but my father, being a Pediatrician at Cohen’s Children’s Hospital, had Abby immediately admitted and taken to a room. My dad called in a lot of favors that night and had the Chief of Pediatric Neurology meet us in our room. Dr. Josef Maytal was very calming and reassuring, and said we would figure everything out. He liked her eye contact and tracking and he liked that she held her own bottle – everything seemed good, except for her seizures. My husband sent me home that night to be with our other two children while he stayed with the baby. Doing exactly what I shouldn’t have, once I got home and got the boys to sleep, I Googled and WebMD’d “babies” and “seizures”, going a step further and Googled “babies”, “seizures” and “reflux.” Interestingly, the results included something called Sandifer’s Syndrome, which is a very severe form of reflux that presents itself as seizures. In a weird way, I was relieved, believing that would be her diagnosis and went to bed. We were scheduled for an 8:00 a.m. EEG to rule certain things out, and I needed to sleep after the day’s events.
I drove to the hospital the next morning, convinced that I was going to hear Abby had Sandifer’s Syndrome, and so was a little more relaxed than I otherwise would have been. I walked in “right foot first” as instructed by my mother, and met Abby, my husband, my dad and my brother, Daniel, who is also a Pediatrician, in the EEG room. The EEG Technician hooked Abby up with nodes and glue and gauze, and while she did, I was told that Dr. Maytal would meet us later. The EEG began, and having no clue what to look for, I was trying to pick up on body language, but when I looked for reassurance, there was none. My dad and my brother had their heads in their hands, both looking as if about to cry. The EEG was supposed to last 20 minutes, but instead, after only 5, Dr. Maytal walked in (he was behind a glass screen the whole time) and said three words I was not expecting to hear — I’m So Sorry.
I was reduced to tears listening to what Dr. Maytal had to say. Abby was diagnosed with a severe seizure disorder known as Infantile Spasm, and the way it is diagnosed is through an EEG. They look for a tell-tale pattern called Hypsarhythmia, which is basically no pattern at all, and that is what causes the seizures. In all honesty, I have erased the bad effects from my mind and cannot bring myself to research them for this post, but from what I knew at the time, I perceived my family’s life as being over and was considering throwing myself out of a window. As I came around and became stronger, I had images of myself as being a super strong mom for my children, and that my family and friends would have to adapt to our new life and that things would just be different. Through these daydreamings, and as Abby’s seizures continued and worsened, I would find myself screaming out to G-d for his help and asking Him why? Why her? Why me? Why us? I made promises to G-d I’m not sure if today I could have kept and just dissolved into less of me. I didn’t want to speak to anybody, I was angry at everybody, and then I would look around the hospital, and see children who were much worse off than my Abby, and I would thank G-d for my blessings. It was a very difficult and confusing time, and that is based on what I actually remember.
We met with a nurse educator who told us the ins-and-outs and what our plan was. Abby needed an MRI to determine if her IS was cryptogenic (having no known cause and is actually a better case scenario) or if there was something fundamentally wrong with her brain. In either case, Abby would have to start a course of a Super Steroid, known as ACTH, that Adam and I would have to inject into her thigh every morning at the same time. We were given a tutorial using an orange, and then Adam did the first injection into Abby’s thigh. She cried a teeny bit, but not as much as I expected, almost as if she knew this was going to help her.
The results of the MRI were good – she was considered to have Cryptogenic Infantile Spasm. We were discharged on Wednesday, March 9, and our “new life” began. Abby was seizure free from the time we got home, which meant the medication was working (it is apparently an all-or-nothing situation, meaning it either works or it doesn’t). I watched her in her crib through our monitor like a stalker. I watched her fall asleep, I watched her be asleep, I watched her wake up. No seizures. 24 hours, 48 hours, 72 hours . . . we were blessed. The days passed, she had EEG’s every other week which were always hive-producing for me, but thank G-d, always went well. She had her shot every morning and rarely even peeped. She smiled again, she laughed again and she played again. My baby was back, albeit much larger due to the steroids, but I swear, I never noticed how big she actually was until I recently looked at pictures of her from that time.
On May 19th, Abby had her last EEG and on May 21, she had her last shot of the ACTH. She is, by all accounts, the most amazing little girl I have ever encountered, and I am not saying that because I am her mother. She is smart, sweet, mischievous, playful, an amazing singer and dancer and just a joy to be around. She laughs the deepest laugh and just oozes love. I love her. My babysitter, Judy, insists that the Super Steroid made her into a Super Baby.
As I mentioned, I hesitated to write this article because I didn’t want to put an evil eye on us, but my “real” brain won against my “superstitious” one. When we were dealing with this, there was not a piece of literature, a pamphlet, a website, or a person to speak to who had actual hope to offer. It was all tempered hope, with cautions; and mostly the “realities” of what was to come. I understand why it needs to be that way, but sometimes, a person just needs to know that the opposite side of the coin exists. If I didn’t write this, somebody like me might never even know that our situation is an option, and I’m sure there are other stories of hope, but like me (almost) they wouldn’t write about it for fear of jinxing it.
Infantile Spasm effects only 20 children in the United States a year – it is the rarest of rare. Ironically, a co-worker of my husband recently had her son diagnosed with it too. What a (bad) coincidence. I hope that this piece provides her and others like her with the hope and optimism they made need just to make it day-by day.