Bite My Ass Flesh-Eating Disease (But Not Really)

Haley today.

May 1 marked a pretty amazing day for my family.  It was just over a year ago – May 1, 2010 to be precise – that my niece Haley, after coming down with the chicken pox, developed a case of necrotizing fasciitis1.  For those unfamiliar with this illness, it is more commonly referred to as the flesh eating disease2 (FED).

Talk about a bizarre day.  I remember my mom calling me to tell me that Haley was in the hospital with FED, and I remember being completely dumbfounded.  I mean, how does a child develop the disease?  I figured it was a mistake, or very clearly a minor problem.  I don’t recall feeling worried, at least, not right away.  Curious, yes.  Worried?  No.  I mean, modern science being all modern and science-like, and figuring that since the medical professionals had diagnosed the problem so early, things would surely be fine.  Right?

Now, when faced with a situation like this, my response is generally to research the topic.  Information is power and such.  This response is clearly a function of the nerd in me.  But it is also that I find comfort with numbers (which I realize is equivalent to calling myself a nerd).  Of course, knowing the numbers is a blessing and a curse.

Blessing: Researching the statistics on FED (such as mortality statistics) distracted me for a while, and let me put some scientific logic behind what was happening in the very real world.  It also allowed me to absorb as much as I could about the disease so that I could temper my responses accordingly, and deal with any of those tricky emotions3 that might come to the surface.  For example, I was able to learn that while Haley’s FED was due to her chicken pox, it’s very rare for chicken pox to lead to FED4.

Curse: Knowing the statistics gave me a sense of dread.  What I learned wasn’t all that good.  Untreated, mortality can be upwards of 73%5.  The Public Health Agency of Canada indicates that death can occur in as little as 12 to 24 hours, and of the 90-200 cases per year in this country, 20 to 30% are fatal4,6.  Treatment often involves surgery, debridement of the necrotized tissue, and in some cases, amputation4.  Due to the infection, patients can also develop sepsis, and organ failure6.

Clearly things were not as simple as I thought.  To be honest, after learning this I was amazed and thankful that the emergency doctors at the Simcoe Hospital had the wherewithal to correctly diagnose Haley, contact McMaster Hospital in Hamilton, and have Becky (my sister-in-law) and Haley whisked there for immediate admittance.

And there in the Pediatric Critical Care Unit (PCCU) of McMaster Haley stayed.  As did her mom and dad, who kept constant vigil over her.  Not for a day, or two.  Not even for a week.  But for the entire freaking month of May.  To say that the family was overwhelmed was an understatement.  I really have no idea how my brother and sister-in-law handled the ups and downs of the month.  And let me tell you, they were aplenty.  The PCCU was especially hard to handle, as all of the patients housed there were severe; children with cancer; children on their death beds.  It was enough to make even the strongest break down.  And yet my brother and sister-in-law stayed there, stir-crazy at times, insane with concern the rest, keeping a constant vigil.  Hoping beyond hope that Haley would recover.

The month itself was tremendously long.  The worst of it came in the middle of the month (the 19th to be exact).  I had travelled to Winnipeg for work and left with the understanding that Haley was on the mend.  It’s amazing what 2 days will do.  While in the middle of a meeting, I received a message that Haley had gone into cardiac arrest.  I may or may not have dropped the f-bomb and bolted from the room, frantically trying to call home to figure out what was going on.  Very little information was available, except that Haley was back in surgery.  Of course I thought the worst.  After collecting my thoughts and reigning in my emotions, I returned to the meeting.  At this point, everyone in the room was aware of what was going on, so no one really expected anything of me.  I honestly do not remember anything that happened during the meeting.  I may have offered my opinion, or mumbled that I’d take on a particular task, but to be honest, it’s a complete blur.  I have never felt so helpless in my life.  I can’t even begin to imagine what Bernie and Becky were going through.

I grabbed a flight back to Toronto the same day, and then ventured to McMaster Hospital with my brother Aidan.  I honestly can’t even describe to you what my niece looked like when I first saw her.  The number of tubes that she had going into her tiny swollen body was unreal.  It still seems like some weird memory of something that never really happened.  But it did.  She was being pumped full of medicine, pain killers and narcotics in order to keep her sedate, as comfortable as possible, and hopefully healing.  The only way that I could look at her was to try to disconnect from the fact that I was staring at my niece.

Over the month, Haley suffered with chicken pox, pneumonia, FED, collapsed lungs, bladder infections, surgeries, sepsis, and cardiac arrest.  It was a very difficult time to say the least.  Ultimately, and thankfully, Haley came out of all of it.  And amazingly, she’s still the active, crazy little girl she was before this event happened.  The only thing that remains now is a tiny scar on her cheek, which is a reminder to me of the events that unfolded last year.  More importantly, it is also a reminder to me of how resilient the human body can be, and how bull-headed the Gillis clan can be.  Mainly though, it reminds me of how strong my brother and sister-in-law are.  For them to have gone through this month of hell and come out the other end still smiling is nothing short of a miracle.

1 If you want to know more about necrotizing fasciitis (and by know more I clearly mean see more), then click here.  If you have a sensitive constitution, for the love of all things holy and sacred, DO NOT CLICK THERE.  Consider yourself duly warned.

2 Note that flesh-eating disease and flesh-eating bacteria are really misnomers; the bacteria responsible for the necrosis of the flesh are not actually eating it.  Instead, they release toxins that cause cell death (or necrosis).  And they do this indiscriminately; fat, muscle, fascia – any cell that happens to be exposed to the toxins will necrotize4.

3 Ew, emotions.

4 The Public Health Agency of Canada Information Sheet on Necrotizing Fasciitis.

5 Trent, J.T., and Kirsner, R.S. (2002). Necrotizing Fasciitis. Wounds 14(8)

6 Necrotizing Fasciitis Fact Sheet


5 Comments Add yours

  1. Beth says:

    Thank the FSM that the Gillis clan are so bull-headed! I’m so glad that your niece is the crazy awesome little girl she was before this whole ordeal! Rock on, Haley Gillis, rock on!

    1. dangillis says:

      Ramen sister science, ramen!

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