If you ask my three-year-old why Mommy and Daddy were in the hospital for a week, he would tell you that his baby sister’s brain is broken. I guess that this is a pretty accurate description.
My daughter is six months and three days old. She is a happy, outgoing, feisty little thing and the light of our lives. A few weeks ago, I could imagine her future and it filled me with joy. However, twelve days ago, that all changed.
I was at work, as I usually am on a Thursday. It was a busy day filled with back-to-back clients and I was grateful to have a lunch break where I could pump and catch up on paperwork. I checked my phone and I saw a missed call from the daycare. That is never something a mom wants to see because it inevitably means a kid is sick.
I checked the voice message which revealed that my baby had a “peculiar incident” at school that looked a little bit like a seizure.
I called the pediatrician who encouraged me to take her to CHOC for monitoring.
And so the rest of my day was canceled and my husband and I went to get my daughter to bring her to the E.R.
Now, I can handle a lot and I know enough about medical concerns to not get bogged down by “what ifs”. I know what seizures look like and how they are typically handled. And I know that I have never seen my daughter have a seizure before so I was pretty sure she was fine.
But what my baby had was different.
Her “monitoring” in the hospital turned into an eight-day stay, complete with an MRI, an EEG, and an earth-shattering diagnosis.
You see, my daughter is not one to be typical—no, she is a rare little snowflake, and so is her brain.
After lots of tests, it was revealed that she has something called Infantile Spasms or West Syndrome, which affects only 1 in 100,000 people.
It is a type of seizure disorder that is characterized by “high voltage” spasms in the brain that essentially look like a brief electrical short. And they are subtle. If you don’t know what you are looking for, you could miss them.
Her eyes will dart up and her arms will jerk out, but not always. You really observe these spasms best on imaging technology, and it is considered to be a severe form of epilepsy.
When we got the news, my heart sank and I cried. A lot.
The biggest source of worry was that we had no idea what was causing theses spasms, and the cause determined the prognosis. Diagnostically speaking, the best-case scenario was that there was no underlying structural, genetic, or metabolic problem.
These kids can often walk away from this disorder with few or even no cognitive and developmental impairments as long as their spasms are controlled. Then there’s a chunk of kids who will have mild cognitive and developmental delays. These kids tend to resemble their “neuro-typical peers”, however, with supportive services. And then there’s a big camp of kids who have “profound delays”. And we had no idea which camp we were in.
So, what do you do when you don’t know what will happen to your baby and you have absolutely no control over the outcome?
Well, for me, I went to my tribe for help.
I told everyone whom I considered to be a support person about our situation. And you know what? Every single one of them rose to the occasion.
I had people checking in on us regularly. I had visitors both surprise and scheduled at the hospital. I had endless offers of help with my three-year-old. I even had meal deliveries. All of my friends were there for me when I needed it, and boy did I need it.
I felt so alone and scared, and they carried me out of the darkness. And they helped me stay sane through the cloud of unknowns that we were faced with.
And when I was ready to research, I had anyone who knew anything about seizures contact me and offer me prognostic information and treatment options. It was incredible. I don’t think I could have survived without them.
This may not be everyone’s coping strategy, but I would recommend this strategy for anyone who is struggling with a sick child. Isolation leads to depression, and you need a clear head when you are dealing with complex medical treatments.
We are two weeks out, and things are looking up. My daughter had a clear MRI and a normal genetic panel, which means that for now, we aren’t dealing with any underlying issues in addition to the seizures.
We started her on an insanely expensive medical treatment that requires intra-muscular shots daily, but they seem to be reducing the frequency of spasms. We will know if it is working after a few weeks.
So right now, we are trying to stay positive.
Of course we hope that any delays she may have are treatable, but no matter what, we will fight for her. She will have the best life we can give her and she will reach her fullest potential with our support. She is my special little snowflake and I will always be there for her. And now I know that there are people there for me too.