731 days ago (two years and one day - November 3, 2017) started like any other day. We had been a family of five for almost two months. Anyone that's had a baby recently would know it was time for baby's well check. A well check is a doctor appointment for a check up to see that you are "well" and for babies and young children often includes immunizations and some surveys on typical development. I took Luke in expecting an easy visit.
In the couple weeks before his visit he had been checked out twice; once at my six week postpartum visit and again at urgent care the week before. We had noticed him making some strange rhythmic movements (baby crunches). Our girls hadn't done this, and at this point we had gotten used to the fact that every child is different so we weren't sure if it was just a quirk or something we should be concerned about. The midwife that delivered Luke is also a naturopathic physician so I brought it up at my postpartum visit and they checked him out not noting anything if concern. They didn't actually see the movements and at that point we had not taken a video. Over the next week we continued to see the strange rhythmic baby crunches so I took him in to see the urgent care pediatrician at The Vancouver Clinic. This time I had a video. The doctor said it was probably just reflux and sent us on our way.
By November 3, 2017 I had been told twice Luke looked fine so I went in to his well check ready to run it by his regular pediatrician, but ultimately expecting an ordinary visit. I mentioned he wasn't smiling yet and showed her the video of one of Luke's spells. She suggested we schedule a neurology appointment just as a precaution. She mentioned a rare seizure condition called infantile spasms that she had seen one time about 19 years ago that it had some resemblance to. She said she would put in a referral for an EEG (the test where they glue a bunch of wires to your head to measure your brain activity) and told us it would probably be about a month before we were seen. She left the room to take care of that and when she was gone Luke started having a spell. By the time she was back he was still doing it, so she was able to see first hand what was happening. We decided to hold off on the shots just in case (some people have adverse reactions and we wanted to make sure we had a clear picture of what was happening and why.) The kids and I hurried home to eat lunch and get Maya off to preschool.
As we were loading up to get to school a call came in from the pediatrician. She had spoken with the neurologist and they wanted us to head down to Randall Children's Hospital as soon as possible and bring an overnight bag. I hadn't even had a chance to look up infantile spasms and now I had to get Maya dropped off and get Luke down to the hospital. My day quickly began to unravel. I was worried, scared and in tears by the time I was walking Maya into her classroom. Those of you who know me know I'm not one to easily cry, let alone let other people see it happening. Thinking back now I'm not sure if I talked to my friend Amanda in the school parking lot first or if I had already called Aaron at work. (FYI, everyone should have an Amanda. My life and my family's lives would not be the same without her and the whole Kerber family.) Amanda did her best to calm my fears and offered to help in anyway she could (did I mention she has just had a baby two weeks before). I made it back home coordinated with Aaron and as soon as he headed home for lunch I left him with Stella and headed down to the hospital.
I got Luke checked into the hospital and we were taken to a room on the 7th floor (acute care). Our room was located just across from the nurses station. From there I could hear the doctor on duty questioning why we were even here. (I have some words for you Dr. Oliva Whateveryourlastnameis.) We waited for a tech to come get Luke hooked up to the EEG and got one just before they were heading home for the day. I didn't know what to expect, and after two years it's a bit muddled, but by that evening it was confirmed that Luke was having at least two types of seizures. I believe they started him on a loading dose of Phenobarbital that night. Aaron had been with the girls, but after that I asked him to come join me. He quickly coordinated with his brother Kyle and came down. A neurologist stopped in briefly on the 3rd to introduce herself and the nurses kept saying the neurologist was going to come back see us, but it wasn't until the late afternoon or early evening on the 4th that a different neurologist came in. The look on her face said it all. She did her best to hold back tears as she informed us that Luke had Ohtahara Syndrome. There wasn't much detail other than he was having hundreds of seizures and that we should consult epilepsy.com. Here's the prognosis listed there: The outlook for children with OS may be grim. Many children progress to have infantile spasms (West Syndrome) or Lennox-Gastaut Syndrome (LGS). Some children with OS may die within the first 2 years of life. Those who survive are typically left with severe physical and cognitive disabilities.
It was updated since we first read it two years ago. If I remember correctly (which I feel it was seared in to my soul, crushing every dream I had pictured for our families future) it used to say that 50% of children will die within the first two years of life. Thanks to advances in medicine that has changed, and after that day (did I mention it was also my birthday) I am forever changed.
The next days, let's be honest months, were hard. I wanted to die, anything to reverse the news. I was angry that God would give me a son just to take him away. "What kind of crappy gift giver are you God!?" It wasn't fair. I felt I had learned if you play by the rules and check off all the boxes you should get the outcome you expect, right? And that all went to shit in a couple days. The dreams I had for our future, you know the family road trips to see that national parks, were dashed away without anytime for me to prepare.
I had been angry at God, and I finally told him, fine if you are going to give me this then you better give me whatever I need to be able to handle it. Our circle of friends and family stepped up and even expanded to include people we'd never met. I'm not even going to attempt to list all those that helped, but here are some of the ways we were supported: a lot of child watching, food, prayer, well wishes, visits, etc. The cloud of depression lifted - I'm not sure if it was suddenly, but one day a couple weeks in I noticed it wasn't there. Life was still hard, but it didn't feel so dark.
I've heard many conversion/reversion stories, but as someone raised a cradle Catholic, eager to please, and easily guilt tripped I had not yet experienced it myself. I wondered what it would be like and was a little envious of those that had experienced them. I was drawn to the idea that these people had received outside confirmation that they were on the right path or being led that way. There's a reason "be careful what you wish for" is an idiom! Listening to the story and actually walking that path are two very different experiences. To put it simply, yes, God was and is working on my heart and challenging my ability to trust in his promises.
Well, it's been two years and my little boy is doing so much better than the prognosis that hit us like a ton of bricks. We've had all kinds of tests and labs and nothing has been found as a cause for his epilepsy. Luke has been seizure free since December 26, 2017 and med free since August 2018. He has some developmental delays, a few sensory quirks, and some unknown visual impairment (as in doctors with specialties I didn't know existed can only give it a general name that is basically your macula isn't right). We don't know what his future looks like, but we are getting more comfortable with living in the now and enjoying this gift of a boy that two years ago we thought was slipping through our fingers.
My birthday has become a time of reflection, mixed emotions and gratitude. Thank you to everyone near and far that has been a part of our family's story. We couldn't be where we are without you. Oh, and P.S. I'm terrible with getting thank yous out, but please know the love you've shared hasn't gone unnoticed. Ok, time to break out another box of Kleenex.
(For those of you that like knowing all the details I'm happy to share, but there is too much for one blog post. Feel free to ask and I can fill in some of the many gaps that went unmentioned.)
