Zara’s world has been turned upside down. About the time she turned six months old she started doing a very odd head nodding spasm while nursing to sleep. I googled it and finally found someone else who had it and was told it was a myoclonic something and was nothing to worry about. They said their baby stopped if they broke baby’s latch and the doctor said it was innocuous. I mentioned it to Zara’s pediatrician at her six month wellness check who frowned but decided it was probably benign. It never lasted more than ten seconds and happened very rarely.
Two weeks later she started doing a funny muscle spasm in her arm and neck. She had stopped rolling which we attributed to not liking the result of finding her self on her tummy. After all, Adam did the same thing. But now I was noticing that she didn’t even stretch as though she wanted to roll.
You can watch what the arm spasms looked like here, although you will probably want to fast forward to 1:57 which is just before it starts. Now looking back, it looks so clear. But back then it was easy to pass it off as innocuous. They were so quick. She never lost consciousness. She smiled and played as though they didn’t bother her. I never really counted to see how many she did at once and I never noticed how frequently they clustered. Plus most days they only happened here and there. Occasionally she’d have a bad day where she had lots of them, like this day. I thought she acted as though she had a muscle issue … like a pinched nerve or something. Especially since sometimes when I rubbed her back, she would clench up her shoulders as though it hurt. How could I have been so blind?
It went on for about six weeks, interestingly seeming to lessen when we got on top of her food intolerances and she started sleeping better again at night. Somehow I assumed that if she had digestive issues, she’d react to the same things Liam did. Not so, and once again I found myself doing detective work. At least this time I knew what to look for. So much for the organic, non GMO quinoa baby cereal.
Suddenly I knew it was time. I called the pediatrician and made an appointment for Thursday afternoon. Armed with video clips, I described what was happening. He instantly said she needs a complete evaluation by a pediatric neurologist. Her movements looked very much like infantile spasms, he said. She was showing no developmental delays except for being helpless as a fish on her back which he thought was unrelated (the neurologists here seem to disagree).
We toggled with hospital choices the next morning, knowing we’d have to drive three hours no matter which direction we went, and settled on Johns Hopkins. The pediatric neurology clinic said they couldn’t get us in for several months and she needed to be evaluated before then so they transferred me to the epilepsy clinic. They were equally helpful and asked just as many questions about what was going on. They thought their first available appointment would be December 6th, but they’d talk with the nurse practitioner and get back with me. Around 10:30 she returned the call and said she really needed to see the video clips. I had one problem. Satellite internet and the allotment was out for the month so I was dealing with dial up speed. I could send them to you tomorrow when I go to the library, I said, or if you really need them today, I’ll drive in to town. ”You know,” she said quietly, “I’m not trying to make you panic but I need those clips now.”
Like a miracle, the video clips actually uploaded, eking their way along in the next thirty minutes. An hour later, around 1:15 pm, I got a call from the neurologist instead of the nurse practitioner. ”This looks like Infantile Spams. We need to see Zara in the ER today. Preferably before 5:00.” I had only one question. “Should we plan to stay overnight?” “Definitely. I’ll let everyone know you’re coming.”
It was like a bombshell. I knew instantly that something was very, very wrong. I had four hours to arrange childcare for the boys, pack, throw Zara’s clothes through the washer and dryer since she was down to pretty much nothing clean, and we had three hours to drive. David had a graduation at camp, but he dropped everything and came straight home.
It was completely surreal. Our darling baby was sitting in her car seat babbling happily and we were flying to the ER because something was seriously wrong with her??
The admitting nurse took a look at the video clip and said, “Oh that’s Infantile Spams.” After all that hurrying, we’d rolled into the parking lot at 4:45 and by the time registration got us through, it was 5:00. Apparently we’d missed the neurology team because from then on, all we’ve done is hurry up and wait. In typical fashion, the weekend schedule is way off and super slow. All the nurses looked at her and said, “Oh, she’s so gorgeous. I’m just so sorry.” I made the very bad mistake of googling IS. Sometimes Google is your worst enemy.
Zara cried and cried as they hooked up the EEG leads and then blissfully fell asleep the entire thirty minutes they tested her. It was completely normal.
They dug viscously seven times and FINALLY manage to get one precious 24 gauge IV in her foot. They still couldn’t get enough blood for labs and ended up doing a heel prick and squeezing it out. Her white blood cell count came back so low they put her on neutropenic precautions, just in case. I chanted, she hasn’t bruised, this is not leukemia quietly to myself.
At 12:30 at night, it feels like the nightmare that just doesn’t end.
The resident came to talk with us and I said, “So if the EEG was clear, does that mean it’s not IS?”
“Oh no,” she said. It could still be. Her symptoms are very classic. They’ll need to do an MRI tomorrow to make sure.
And so Zara went NPO after midnight. I cuddled her on the couch all night long, waking every time she stirred and being bombarded with reality covered in supernatural grace.
Today. We waited. And waited.
Finally the clouds broke. They repeated labs, this time with ONE STICK, and her white count was much closer to normal!! Thank you, Jesus!
Around 12, one of the pediatric residents came in to say that not everyone on the neurology team had seen the video clips. They would be in “shortly” (do you have any idea what that word means in a hospital?) and after viewing it would decide whether she still needed the MRI today.
Excuse me? We have not fed her because why?
An hour later the neuro team showed up to evaluate her and look at her footage. They nodded their heads meaningfully at each other and said few words as they watched.
Plans changed. They wanted to do a longer EEG and attempt to catch some of the activity both on video and on the EEG. Based on those results they would decide whether or not she needs an MRI. ”So you still feel certain that she has IS even though her EEG last night was clear?”
“No, we feel fairly certain that she does not have IS. Sometimes the characteristic hypsarrhythmia doesn’t show up in the first few weeks, but it would almost certainly be present after six weeks.” For the first time, I felt relief at having waited. Would she have been diagnosed incorrectly and treated wrongly if we would have brought her in immediately? Only God knows.
I was ecstatic at ruling out IS. The doctors looked at me soberly and without sharing any of our joy. I knew they suspected other things and it was too early to celebrate, but knowing it wasn’t IS took an enormous weight out of our day. So now we’re back to the waiting game. Watching our sweet baby girl babble and reach out for toys and wondering what lurks below her cranium that we aren’t seeing. There is nothing to google. No statistics to horrify.
Just a baby girl and her naive parents. And a pending EEG.
Thank you to the hundreds of people who are standing beside us in prayer. We feel those prayers surrounding us, giving us courage, helping our eyes to be brave as we hold down our baby girl who is desperately trying to get away from another tourniquet and needle. Helping us to rest and sleep in the in-between moments when our room is quiet. Helping us not to panic about the what ifs or the this is moments. We believe God is the Creator of Zara’s life and He is also her Healer. Our Sustainer.
Please help us praise God for such a wonderful, compassionate, knowledgeable team from the pediatrician who recognized a very rare disorder to the neurology doctors who (we think) hold the key to solving this mystery and who did not stop at a full appointment schedule.
We continue to pray for a correct diagnosis and complete healing for Zara.