Monday, 7 May 2012

Closing the last door

It's been a while since I've posted.  Although 4 months ago it seemed impossible, life has begun again in earnest, and I've been busy.  The vast expanse of empty time to be filled before I return to work is now filled with the humdrum happenings of life. 

Poppy's 4 month anniversary passed without most people noticing.  I thought even G had forgotten, but I was surprised when he immediately identified my teariness leading up to the date for what they were; the lonely reminders of my daughter's tiny life and that the pain still rages.  I'm not saying that I haven't healed a bit, I have, I don't feel that ache quite so keenly now, it rarely takes my breath away, but the abyss of grief is still in me. 

4 months seems like such a little amount of time, but it's hard to remember what life was like before.  It's seems like another life, someone else's life, in a sunnier, rosier place.  People tell me time will heal all wounds, but I wonder if I want to be healed.  The pain is what reminds me what Poppy meant to me, to our little family.  Truly I don't believe anyone really heals from this type of grief.

It's seems odd that it was 4 months almost to the day that G and I trooped off the our fertility specialist again.  It was a journey I longed to never take again, a reminder that our triumph in conceiving our second child didn't become the squirmy little bundle of joy I was hoping to one day take to meet the amazing doctor who made her possible.  A reminder of my failure to get her here safely, although I know in my head that's unrealistic.  In my heart I think I will always wish I had done a thousand things differently.

Anyway, off we troop to see Dr Kate, who is an amazing, no-nonsense, wonderfully up to date, reproductive endocrinologist.  And I knew I would have to tell the whole story from the start, once again.  Kate was kind and more than a little shocked at how unlucky we had been to lose two pregnancies to two unrelated and equally rare conditions.  One in a million, I am.  Great.  Why couldn't I be the one in a million who gets nice rewards like lotto wins, or major prizes in raffles?  No raffles for me, just rare medical conditions.  So we make a list of things to get tested before we even think about reembarking on the baby making journey.  It looks a little like this;
  1. Test for Genetic Disorders (done with very little feedback.  What can be ruled out, has been)
  2. Test for Viruses which make have caused Poppy's heart problem (Done, Adenovirus results positive, but we don't know when I had it, so not really that helpful)
  3. Test for Hormone levels (always been fairly average, but worth a try)
  4. Test for Anti Ro/La antibodies which cause at least 50% of the condition Poppy had (been tested, negative)
  5. Test for various other rare, unlikely disorders (because, lets face it, with my track record...)
  6. Get all results and reports from my OB, Poppy's cardiologist, and any other Tom, Dick or Harry that was involved in my care, and
  7. Lose weight, because we know that helps me get pregnant and stay pregnant
OK.  Do all that and come back in 2 months.  Before leaving, Kate looks me straight in the eye and says, "we're going to get you a take home baby."  I was, up until this point, still a little whishy-washy on whether I wanted to embark on trying to have another baby.  The fear was enough to make me want to vomit, but I am trying to not let fear run my life.  But still, was I strong enough to do it all again?  But with Kate's words, I realised that what I wanted, more than anything, was another baby.  A little sister or brother for Poppy and Xavier.  A little person to heal us all, and give us hope. 

So after arriving with a sense of dread, I left with a sense of hope.  Maybe, just maybe, we might be able to make this happen.  With about a thousand doors to close so the draft doesn't blow up my skirt at inappropriate times.

I have entered 'make it happen' mode.  Booked in to the Immunologist to make sure there are no nasty immune problems happening: Check.  Booked in to a Geneticist and discuss what little there is to know about the condition Poppy had:  Pointless, but Check.  Get OB to fax info and test for viral infections: Check.  Start exercising and being a little less reliant on chocolate: Difficult, but check.  Book in to see Cardiologist and discuss anything else we should be doing to prevent this happening again...the last door to close.  Here goes nothing.

I should point out that the limited information we have on EFE (Endocadial Fibroelastosis: the heart condition which claimed Poppy's life) was gathered through on line medical journals, my OB's limited knowledge, and a Geneticist who had clearly googled the same studies I had.  Primary EFE, in the absence of structural injury, is almost never seen now days.  And when it is seen in babies as little as Poppy, it is almost universally fatal.  So obviously, we are keen to prevent it if we can.  Lance, the cardiologist, is hard to get hold of even as a patient, and given we are not really patients of his, it took ages to get in to see him. 

Closing that last door seemed like it was never going to happen.  We couldn't get in to see Lance quickly, and all the options seemed to clash with something.  We booked a time and ended up having to squeeze it in between a couple of other things.  We arrived half an hour late to a 'FULL' sign on the hospital car park.  Not a simple procedure to sat the least.  But a very kind Lance said he would still see us.  So in we went.

"I disagree with the findings of the report," he announces.  "Well, I believe there was more at play here that just Primary EFE."  Lance goes on to explain that the EFE was likely the result of Poppy's heart beating slowly for so long.  "It's basically a fancy word for scarring."  He describes the main problem, the one that is likely to reoccur, is the Fetal Heart Block that was his initial diagnosis.  It's between 20-50% likely to reoccur, but we can watch for it and treat it to prevent it getting worse.  We know what to watch for and what to treat for with heart block, and it's fixable after a baby is born with a pacemaker.  Still scary, but better than a death sentence.

G and I sit, feeling a bit gobsmacked.  It makes sense.  It fits with what we know about Poppy's heart.  It gives us a chance. 

I walk out feeling lighter, and calmer.  We agree that it's the last door, closed.  No more drafts up our nether regions.  Everything that can be checked off, has been.  It doesn't change anything.  Poppy is still gone.  But it gives us hope for the future.

Time to open a few more doors.

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