"Edited to Add"....

This started as a pregnancy blog when I fell pregnant in May 2009 after four years of finding a donor, doing all the counselling / paperwork / tests and trying.

And now, thanks to a 4WD which skidded onto our side of the road, killing our baby daughter at 34w and injuring me, my partner and two of my stepdaughters on 27 December 2009, it has turned into something else. We didn't want this something else, but apparently it is all we've got to go on with.

Wednesday, November 9, 2011

El Dia de los Muertos

I'm slightly late, but wanted to say something about the Day of the Dead, especially given Angie's beautiful piece over at Glow.

I like Bionic Baby Mama's idea that wherever not-yet-born babies "are", spiritually speaking, they are probably in a similar spot as dead people, or are at least more able to get phone reception when the dead people call than we are.  So the Day of the Dead feels like a particularly appropriate day to celebrate my children - both dead and unborn.  (Gorgeous difficult-to-explain children that you are!)  I have no cultural connection to this particular tradition, but I guess Z and Adzuki may have, given that their donor (our beautiful friend J) has Colombian heritage. 

Given that, and my teenage obsession with Frida, I was excited to hear on the radio about a Day of the Dead party last Friday night.  So El Prima and I went, along with my brother, and danced and ate and drank margeritas (well, I had a sip) and invited Z to party with us.  It was beautiful to have a night in her honour, when thinking about our dead daughter wasn't "morbid" or weird, it was something to be celebrated and proud of, even if it did make us shed a tear while we danced.  And I dressed up, somewhat ridiculously, as Frida.  Yes, I may have ended up looking more like a dutch milk maid, but El Prima and my brother could work out who I was dressed up as. 
I don't know that I've written about Frida before here, but when I was in hospital, there was a moment when I was being wheeled into a new room, and my bed was piled high with the things I had surrounded myself with to warm my hospital room in the long quiet nights - blankets knitted by my mum and my best friend, the pink rabbit my brother and sister-in-law had bought for Z from Germany, an old bangle of mum's that smelled of her, Z's photo (in my arms).  And I thought suddenly of Frida - and how much time she spent in that state - building a small human nest and a way to function as a human through layers of pain, incapacity and isolation.  So I took her as my patron saint, and started documenting the experience, making art around it and through it.  I started taking care in what I wore, how I did my hair and ornamented myself, letting a new post-accident style emerge.  Good friends of ours were travelling in Mexico while I was in hospital, and bought the shawl I'm wearing in the picture above at the Frida Kahlo Museum in Coyoacán in Mexico City.

We had our 13 week scan this morning, and my first reaction when we saw a beautifully formed, very much alive little Adzuki bean was to burst into tears.   The same thing happens every time I look at the pictures.  I'm not sure what it is - disbelief combined with the scary realisation that so so much is at stake now.  I love this little thing with its own ribs and enormous head and tiny, pointy bum.  This small dancing skeleton-baby - just like the decorations at the Dia de los Muertos party, only without the sombrero.  And I'm so scared when I realise how little I can do to protect him or her.

As she was doing the scan, our sonographer gave us little snippets of good news - "there's the nasal bone - a good sign as lack of nasal bone at this stage is associated with Downs", "that's a good heartbeat, no sign of any valve problems", "you should be fine with the nuchal fold measurements from what I see here".  So it was a bit of a surprise when she rang back a few hours later with the combined test results and told me that I'm actually classified as high risk for Downs - while my ultrasound result came back very low risk (1:795), my blood tests came back very high risk (1:53) giving me an overall risk of 1:161. 

El Prima and I are agreed not to do any further invasive tests such as an amnio - our main reason for doing the test at all was to assess the risk of the other more fatal triploidies - 13 and 18 - as we would be okay with raising a Downs syndrome child.  And, when we separate out the figures, our risk level for those more serious disorders is tiny (1:100,000).  Yet, because the test is designed primarily to pick up Downs, that leaves us with all the uncertainty and anxiety that goes with the "high risk" tag.  Now I just wish I'd never taken the stupid blood test.  After spending most of yesterday reading medical journal articles on the risk factors, my learned view is to forget the whole thing and just focus on enjoying this pregnancy and doing our best to get Adzuki here alive. 


  1. You have the best attitude about all of this, but I know these things can be easier said than done. After we had the huge scare in Juliet's pregnancy (which then all turned out ok) I sort of wished we'd never found out about the stupid virus as then I wouldn't have spent so much time fretting and worrying. But I guess I was going to fret and worry anyway, as pregnancy after loss will make you do that.
    Thinking of you and both of your beautiful babies, dead and unborn and never morbid.

  2. what a beautiful way to celebrate Z! :)

    as for the blood tests, they are evil. we got the opposite result (elevated AFP) which indicates risk of neural tube defects. for two weeks until our level 2 ultrasound, i walked around crying, wondering if our baby was struck with anencephaly or some other awful and life-threatening problem. it seems ridiculous now that i took it so poorly.

  3. Argh.

    I was petrified about our nuchal scan - it seems like what she saw is a good collection of indicators and just 'argh' to the blood tests.

    My cousin, in the days of just a triple test, had a risk of 1:9 twice. Neither child had Downs - and I glibly thought at the time "well, I wouldn't stake my house on a 1:9 chance of winning the lottery tomorrow" - but now I know about statistics and real life and worry and all those other horrible things.

    I hope they'll give you some extra scans if you want them - and I hope you can breathe.

    Wish it could have been more straightforward.

  4. Man those tests are so anxiety-ridden. I'm sorry that you got not so great results and even though the odds are in your favor I know that it is scary as hell. Ugh. Wishing you some peace in the coming months.

  5. I suppose the only thing to consider if you're happy having a Downs child is that the lovely little bean is, you can have the necessary supports in place for the birth (Heart specialists etc) and get right on Early Intervention services. Early intervention is incredibly important in cases of Downs.

    Lovely, lovely news on a beautiful heart and the rest of the good news, though!

  6. oh i love day of the dead and celebrated it last year with a mexican friend and some others. we made a massive flower covered offering and ate and danced and all talked freely about our departed loved ones. its such a special day. sorry about the stress of the blood tests, i'd go with having a nasal bone though as a great indicator that everything is ok, although i do understand the worry. i worried right through my pregnancy and even when dot came out i asked if she had downs. and huge congratulations on a lovely scan xxx