Introducing Fairfax the bunny.  Fairfax is a bunny I bought for my daughter Marissa when she was hospitalized for six days on Valentine’s day of 2008.

Let me start from the beginning.  My beautiful Marissa was born on November 8th, 2007.  Three months passed mostly uneventfully, but on the afternoon of Valentine’s Day we were watching the Muppets Tonight with Prince as the guest star in preparation for her nap.

She made this odd jerking motion.  Then again.  Then ten more times.  I started to freak out about it and called my wife at work, called anybody I could try to talk to.  Nobody answered, everybody was busy with life’s mundane tasks.  Frantically, with the teary baby still in my arms, I turned to Google, and researched epilepsy quickly, but didn’t find anything relevant or that looked like what she was doing.  I was relieved- but only for the moment.

We brought Marissa to Inova Fairfax hospital.  She was a trooper through it all, dealing with poke after poke for blood draws and many painful failed attempts at an IV insertion.  Hard for her to deal with, for sure, but miserable for her helpless father to watch.  For eight hours, she patiently dealt with it all, the pokes, the prods, the investigations.  It all changed just before midnight.

At about 11:30 that night, she seized again.  This time, more seizures in the cluster, and more spasmodic.  I could barely see through the wall of nursing staff.  Discussions were had about immediate anticonvulsant medication, and how it wouldn’t help.  About six minutes later, she stopped this seize.  The staff was about as relieved as I was, but we still didn’t have a diagnosis.  Watching her seize and know there’s nothing in this green Earth you can do about it tears you up.

The next day, after an overnight with a video EEG machine and an aborted attempt at a MRI (which required fasting, which you can’t logically explain to an infant!), we got a diagnosis.  Marissa was diagnosed with infantile spasms.  My wife worked in a pediatrician’s office for 14 years, and read just about every pregnancy book she could find, and she had never heard of this before.  The same pediatrician who my wife worked with has maybe had one other case of this in thirty years of practice.

My sister in law relieved us at the hospital for a little while so we could go home, shower, feed the cats, and do the things in life that you forget you do every day, but they need to be done anyhow.  In that rushed home stop, we got a better hold on the diagnosis and what it entailed- the severity of it stopped us in our tracks.

It’s been four months since the diagnosis at this point.  We’ve been through a generic steroid treatment which did nothing, another hospitalization, daily intramuscular injection Acthar gel steroid therapy which ultimately did nothing, and three other anti-seizure medications with varying degrees of rashiness, baby rage, irritability, and success. 

Marissa’s infantile spasm seizures aren’t the same as a “stereotypical” grand mal seizure- they come in clusters, with each individual seizure lasting a couple of seconds.  She can have as few as three or as many as fifty nine seizures per cluster.  The whole event is normally over in ten minutes or less, but have gone as long as fifteen minutes. 

Infantile Spasms is either a symptom of something larger, or it can be the disease itself.  So far, Marissa’s only got infantile spasms as a disease and not as a symptom, but we’re not out of the woods yet.  Around two years of age, with what’s called cryptogenic infantile spasms, they’ll either resolve themselves, or evolve into something nastier, and only time will tell on that.

So, now that the beginning of the story is told, let’s go back to Fairfax.  As I mentioned, Fairfax is a stuffed bunny I bought for Marissa during her first hospital stay.  She had it with her in her hospital crib which looked like nothing more than baby jail during the day, and I clutched onto it for dear life at night.   She had so many wires, cables, gooey electrodes, and other lines attached to her at any given time, I couldn’t just scoop her up and cuddle on her- the bunny was our lifeline to each other. 

I’m starting Fairfax’s journey in the next few days, both as a way to communicate outside my little bubble, and to spread awareness of this syndrome.  If you’ve got the bunny, and have read this far, take pictures of where you are.  It doesn’t matter who you are or where you live- take pictures with Fairfax, and email them to Marissa.  I’ll post them here when I get them, with just about whatever text you want for each picture, or even none, if you’re a person of few words!  When you’re done, pick someone to send it to that you know will continue Fairfax’s trip.  If you don’t want to have anything to do with this, email Marissa and we’ll make arrangements to send it back to her, with no cost to you, so I can restart the journey.