Tuesday 14 February 2012

Why?

Last Friday we got the call that we had been both waiting for and dreading.  Autopsy results are in.  Hopefully we can finally find out why Poppy was taken from us so soon.  I never thought I'd be in the position of making an appointment with my OB to discuss a post mortem report for my child.  It shouldn't happen.  No one should ever have to link works like post mortem to their babies.  But I do need to know why. So we booked in to see Dr W on Monday afternoon, the soonest we could get in.

All weekend different scenarios played in my head.  The doctor yelling at me, "It's YOUR fault," was the worst, closely followed by, "Well, actually there was nothing wrong with her...".  Any answer was going to be devastating.  And no answer was going to be worse.  G and I prepared ourselves for the possibility that we would not find out why she died, other than what we already know; her heart stopped beating.  By Sunday night I was beside myself with anxiety.  I'm not sure why it had hit me so hard.  Maybe I was simply nervous.  But I just couldn't take it anymore. 

When I get worried, I get snippy.  I admit it.  I can't help it.  I snip at anyone; G, Xav, the checkout chick, stray cats, whatever is near by.  By 6pm on Sunday evening, G couldn't take it anymore.  "Stop snapping at Xav, Bec, he's not doing anything.  What's your problem, anyway?"

I could have punched him in the face, to be honest.  What's my problem?  My baby died.  And I want her back.  And she isn't coming back.  And tomorrow I find out if I killed her.  But I didn't say those things (or punch him in the face...).  Instead I went to my room and threw a crying, snot dribbling down my face, kicking things, tantrum.  It's all just too much.  How am I meant to cope under this amount of pressure and grief?

G was a bit scared to come anywhere near me.  But after some time I calmed down enough and he held me together, like he always does.  Xav's little face pops up at my elbow, asking me why I'm crying.  "I'm sad, buddy, very sad," was all I could say, and then apologise for my grouchiness.  I explain my fears to G who (as usual) takes the sensible line of "We'll take it as it comes."  My problem has always been my brain racing off in advance of what is sensible.

Monday is also the day G goes back to work full time, after being at home with me for 8 weeks.  I guess part of my problem is that I feel like everyone else is moving on, getting back to reality, when I'm still sitting here in limbo.  I never imagined I'd be spending 2012 sitting at home by myself.  I thoughts I'd be exhausted, looking after my daughter all night and day, doing the school run with a capsule in hand.  What I wouldn't give to be showing her off to anyone who would look. 

So Monday was a long day.  G at work, Xav at school and me at home.  My sister brought little Hamish around and we chatted the morning away which I really appreciated.  1pm, 2pm, 3pm...almost time to go.  I finally get sick of waiting and take the long way to get to G's work.  4.20.  Our appointment time, but of course Dr W is running late so we sit with all the pregnant mums and their partners and wait.  One heavily pregnant lady waddles by and quickly glances my way with that knowing smile on her face.  She thinks I must be newly pregnant, too early to be showing yet.  "I HAVE A BABY!", I feel like shouting at her.  My beautiful girl was here and now she's gone. 

I manage to refrain from yelling obscenities at the nice pregnant ladies, and finally we get called.  We sit down and Dr W gets the report out.  "Good news!" he says.  Good news?  Sorry?  Unless you are going to tell me you have Poppy hidden under your desk, there is no good news.  He continues with, "we found out what was wrong with the babies heart.  She had endocardial fibroelastosis."  OK?  And that is?  Apparently it's quite complicated, very rare and almost always fatal in newborns.  And it's unlikely to be passed on to another baby, according to Dr W.  However, it's possibly genetic so we need to go for further testing. 

The news sinks in.  I didn't kill her.  She was never meant to live.  God gave her to us for such a short time only to take her away.  Why?  Now we know why, but why?  What did she do to deserve such a fate?  What did we do to deserve such heart ache after everything we've been through.  Dr W is positively beaming.  I guess he's so glad it wasn't his fault, almost as glad as I am, I suppose.  "It's positive news," G whispers.  I wish I agreed.  I do, I guess.  I just wish it wasn't so.  We leave, clutching the report, and referrals to Genetic counselling, Immunology and blood tests for a small number of viruses which might have caused the EFE to develop.

I guess we got our why.  I just can't help but think that it raises a whole lot more questions that it answers.  We need more information.  But maybe, just maybe, we are now a tiny step closer to Baby number three.  With a little bit of luck, anyway.

2 comments:

  1. Thank you so much for sharing this story. Have they given you the odds of this condition? Love to you all XXX

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    1. Can't find any recent info on it at all. All the studies are from 60's and 70's. It was basically erradicated when the mumps vaccine was invented, and apparently is virtually non existent now days. If it's genetic, 10% chance of reoccurance, if not we just don't know. Unlikely according to dr. BUt we're going to talk to the cardiologist and see what he says.
      Thanks for reading it xxx

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