Saturday, January 29, 2011

The Little Red Dot

One day, about 6 or 7 weeks into Adeleine's stay in the NICU, I arrived in the morning to find a scratch on her forehead, above her right eyebrow. 
 "Aw, did you scratch yourself?" I said. The nurse on that day quickly pricked up her ears and with what seemed like excitement said, "It's a hemangioma."
"A what?"
"A HEE-man-GEE-o-ma."
"Oh. What's that?"
(Gesturing wildly to the student nurse to listen in) "It's a collection of blood vessels that will grow, quite large (makes a circle with her fingers the size of a toonie) for the first year, and then it will start to fade away. A hemangioma. It's not a scratch.  It's a hemangioma. "
"Oh. Ok thanks."
I continued to look at my precious little baby, still believing it was a scratch, for the rest of the day. Until I got home, when I googled it.  Don't google it. Images of children with giant plum-sized fire-engine-red tumours hanging off their heads is not what a mom with a kid in the NICU needs to see. Google shoould have a NICU-mom filter.  These are the worst cases, worthy of photographing for shock value. And, of course, I went ape-shit.
Once I calmed down I researched it (without images) and found out that they can be caused by exposure to oxygen (which Adeleine had been on for weeks) and are much more common in preemies, especially preemie girls.  It turns out, for the particular kind Adeleine had, it could be removed with laser.  I had a very small angioma (I had no idea that's what it was called at the time) removed a few years ago, so I knew it was no big deal: in the office, zap, done.  Hers was very small, so it should be no problem at all. Well, the NICU ped wouldn't give her a referral. When we were discharged, Adeleine's ped wouldn't give her one either.  The treatment, they said, was no treatment - wait and it will eventually go away on its own.  Well, yes, but only 50% go away by the time they are 5, another 20% are gone by the time they are 7 and the last 30% are around until they are 10 years old or longer.  "They will only remove them if they are impeding vision, breathing or eating." was the response.  Bull, I thought.  So I did more research.  Turns out there is a pediatric hemangioma clinic in London, so I called and tried to get in without a referral.  No go, says the woman on the phone.  What was the big deal, I asked, and told her about my experience with the laser (in, zap, done).  Oh no, she says, "You can hold still.  Infants can't hold still.  To use the laser, if they agree to treat her, would require us to book the operating room and put her to sleep."  And that was it.  That was what I needed to hear. The thought of my baby, fresh from the NICU, going back into a hospital, into an operating room and being put to sleep, all because of a little red dot...NO WAY. 
Suddenly it began to look smaller to me.
And I felt a little foolish.
It's funny how little things, superficial things, can easily take over your thoughts.  That day, I woke up and started to see it for what it really was, a very small red raised dot. It may get bigger, yes, but it's growing very slowly so it will never grow to the size of those google images, or most importantly, block her vision.  A few times, I've covered it up with my thumb and looked at her, but instead of thinking she looks better without it, I think she doesn't look like herself at all, like something's missing, so I pull my thumb off quickly...there, that's better, there's my beautiful girl.   It's a little splash of colour on her porcelain face. And it's perfect.  In fact, I'm grateful for it. I'm grateful that one of her few, minor, temporary effects of being born 13 weeks premature is her precious, little, red dot. 
I know we are truly very, very lucky. 

*Please note that this blog is not medical advice. It is simply our story.*

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