In the shadow of the valley of SUDEP

In the shadow of the valley of SUDEP

Four times this month, the monster has won.  Four times.  Four mothers have been forced to bury their small children.  Four kids are gone because of a disorder that most of the world still sees as non-life threatening in spite of the 50,000 people in the US who die seizure related deaths every year.

Every year more children fall prey to SUDEP than to SIDS and more people die from epilepsy than breast cancer.

I was sitting on the couch a few days ago reading Facebook when another post stole my breath.  A sweet girl was curled up in her daddy’s arms watching TV and then she was gone.  No warning.  No preparation.  No goodbyes.  Just gone. I looked down at my own little girl with her head on my shoulder and I felt my heart stop because as much as I try to pretend we’re OK, I know that monster lives in my house too.

Alyssa slept late the next morning.  It took every ounce of strength in my body to push her bedroom door open when she didn’t emerge for breakfast.

Last week our neurologist spoke at the epilepsy support group I attend through our children’s hospital.  The topic of the evening was SUDEP, Sudden Unexplained Death in Epilepsy.  I dreaded her talk for weeks but I forced myself to be brave and lean into the discomfort.

Dr. Keator started with the statistics. According to The Epilepsy Foundation, “each year, more than 1 out of 1,000 people with epilepsy die from SUDEP. If seizures are uncontrolled, the risk of SUDEP increases to more than 1 out of 150.” One in 150.  I lost my breathe again.  She tried to comfort the room full of terrified parents by explaining that our children were much more likely to die from other seizure related deaths, like status epilepticus or drowning, than from SUDEP.  I leaned in to the mom beside me and reminded her to breathe.

As the night continued, we learned the risk factors for SUDEP. The most important risk factor is intractable epilepsy which means that the seizures can’t be controlled with less than three medications.  Alyssa has a toolbox full of medicines that she takes every day.  Her risk increases because she started having seizures as an infant, her seizures are usually tonic clonics, she has an intellectual disability, and she has a genetic disorder. We learned that we should know CPR and supervise our kids closely.  Then we learned that those interventions would likely not make any difference because the brain and lungs have simply stopped.

Four times in a month, mothers have laid their children to rest, children who look just like the one sleeping down the hall from me right now.   SUDEP and seizure related deaths steal my sleep and my peace and could one day steal my child. If you wonder why I keep writing about this disorder when my child looks healthy to the naked eye, this is why. If you wonder why I’ve lost my sparkle and aged a decade in the past three years, it’s because I wake up every morning wondering if my daughter will too.

The psalmist wrote of walking through the valley of the shadow of death but my family lives there.  There is no escaping.  There are more and more therapies and treatments that might keep the darkness at bay but it is always there.  Waiting.

 

PCDH19

Let’s continue this conversation with me on Facebook, Twitter and Instagram.  If you have a child with special needs, how do you handle the stress of what may come? Did the news that epilepsy can be fatal come as a surprise to you? I welcome your thoughts and experiences.

PCDH19
Alyssa was diagnosed with PCDH19 Epilepsy. This genetic disorder causes seizures as well as cognitive and behavioral issues.

If you would like to make a donation in Alyssa’s honor to the PCDH19 Alliance so that we can find a cure, please click here.  They are funding amazing research, advocating for our kids and supporting families around the world who are facing this disorder.

 

 

 

 

 

 

 

 

 

This post was a part of a NaBlogPoMo16, a challenge for bloggers to post every day in November.  Check back through out the month for more.

NaBloPoMo November 2016

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2 Comments

  • Meg Coldwells
    November 17, 2016 1:36 am

    Yes, this is all too real for me as well. In the 5 and ½ years since my 11 year old son’s first seizure he has never slept alone. SUDEP is my worst nightmare.

  • heidi
    November 19, 2016 11:48 am

    I admit I didn’t know about that either. It is so good that you are sharing your stories and spreading awareness. I can’t imagine the stress you must feel on a constant basis.

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