When your pregnancy blows up in your face

Have you had it?

The moment in a pregnancy scan when the sonographer stops smiling?
The polite banter ends.
Have you seen the blink and you’ll miss it “oh no” flash across her face?
Have you?

Did you feel it?
The cold creeping fingers of fear as you realise this is not going to be a good day?
The rising dread.
Did you feel your insides turn to mush as you realised your life was about to change?
Did you?

Were you dazed?
The point that she put down the probe and caught your eye?
The words forming on her lips
Were you silently praying and beginning to beg to all manner of gods in your head?
Were you?

Could you breathe?
The words ‘a problem’ and ‘referral to fetal medicine team’ making you gasp.
The fear crushing down heavy.
Could you take in all that it meant when she mentioned chromosomal disorders?
Could you?

Should you run?
The thought probably took over your brain stopping any pain at least for now.
The urge to flee.
Should you get up and walk away and pretend that none of this ever happened?
Should you?

Should you? Could you? Do you?


In March 2010 my pregnancy blow up in my face. My 12-week scan showed a high nuchal fold (fluid at the back of the baby’s neck) and therefore a high risk of a chromosomal problem.

I didn’t get told that I had lost my baby in that scan. I couldn’t begin to imagine that pain.
But to my shame there were flashes over the next few days that I wished I had.

You see I knew immediately what this could mean. Someone close to me had had similar news six months earlier and was facing giving imminent birth to a child that was not expected to survive. You can read more on this story here. She is an amazingly strong woman (who I will admire to the day I die) that gave her child – created so fragile – a chance.

I was not that woman.
I was not that strong.

The urge to turn back the clock. To have not put myself in this situation was immense.  We had to wait two whole days for the fetal medicine team to see us. 48 hours is a long time to think. To plan. To dwell. To rage. To self protect. To begin to distance.

I didn’t have to do this. I could make it all just go away. Go far away.
You shouldn’t still have to play when someone had changed the rules.
Should you?

The fetal medicine team could tell us no more (there were no more scan markers) and the only way to know for certain if we were facing life with a child that would have a disability would be to have a CVS test. Would you like one, they asked? You can have it now and know the results in a few days. Then you could plan, they said.

Yes, I whispered. Yes, my brain shouted. Yes, the future me with the life mapped out hollered.
Let’s know for certain. Let’s make a plan. Yes.
Please yes.
The “wait a minute” of my heart nestled so tightly beside my baby was not allowed a voice.

But my husband was.

If we have this CVS, he asked quietly, is there a risk to the baby?
There is, they said. Two in a 100 woman experience a miscarriage due to CVS. Two in a 100 babies, potentially normal babies, will die.

Suddenly my heart’s voice was getting stronger – urging me to stop and think. The team sensing our new hesitation told us to go for a coffee and have a talk.

Looking back now, a twenty minute coffee break is not a long time for a decision such as this. But for us it allowed us to stand back and look at the facts:

  • Was it good news that there were no new markers on the scan?
  • Could we therefore rule out the more serious chromosomal problems?
  • If we were told today that our baby had Down’s syndrome, would we continue with the pregnancy?
  • Did we want to risk our baby’s life to know something that wouldn’t make a difference to our course of action?
  • Could we be brave?

We answered mostly ‘yes’ (I’ve always been a sucker for a pop quiz) and decided that was enough to decline further testing for now.

When your pregnancy blows up in your face, the need for certainty in a situation so uncertain is overwhelming. You think ‘knowing’ will help. You need to find some control when your life is spinning so seemingly out of control.

With the benefit of a three-year hindsight and a once very ill boy getting stronger by the day, what did I learn? Perhaps this:

  • No one to this day can tell me whether the nuchal fold size had anything to do with Gabe’s eventual condition. Perhaps it was fluid from his hole in his heart? Maybe not? I know lots of women with the same nuchal fold reading that went on to have normal babies. I know loads of women who had normal nuchal fold readings that had children with a disability.
  • The strange thing about our situation is that Gabe’s unknown genetic condition would not have been picked up by a CVS test as it can’t even be picked up on an in-depth genetic array. It is so rare that testing for it is only in trial form. We would have thought we were getting a reprieve and we weren’t.
  • Even though we got six months to ponder on life with a disabled child we were still not ready. It still took us by surprise.
  • This normal versus disability thing is shoved down your throat at a prenatal stage in these stressful circumstances. What you are never told is that for every condition – genetic or otherwise – there is such a vast spectrum and you are never going to know anything for certain in utero. There is no black or white with any child. They don’t come with a warranty agreement.
  • I have known children born with the worse odds defy all the doctor’s predictions and make their parents’ hearts soar on a regular basis.
  • For every bad day there are ten amazing ones and a hundred your bog-standard ‘the world’s not falling in’ and ‘hey what shall we have for dinner today’ average.

And finally if I had know then that the thing that I feared was just this lovely little boy called Gabe I’d have laughed. If I had know my foetus with the chromosomal disorder that made me weep was this boy who giggles in mirrors and now bum shuffles to hidey-hole places then I would have done a little dance.

Gabe says: “I am aces, I really am. I could look at myself all day!”

 

“Yep, still aces”
“Still here looking beyond aces”

 

“In fact I am the bee’s knees”

 

“Oh and I make a lovely spag bol.”

 

Watch me go!

Post Comment Love

19 Comments on When your pregnancy blows up in your face

  1. Jane Roberts
    July 30, 2014 at 8:21 pm (3 years ago)

    A lovely post, had me in tears. With autism we never had anything show up on the scan, I'm glad in a way as it gave us time to get to know our boy. It did cause me great concern for trying for another baby but Little E is now here and we wait to see what adventures she brings with her. I know there is a one in five chance of autism, we also had a risk of downs that my doctor wanted to 'talk' to us about. Before Ethan I would have gone for testing, after Ethan I wouldn't. Not that there isn't ups and downs, not that I'm not scared but happy knowing that we are doing OK :0)

    Reply
  2. Katie
    July 30, 2014 at 10:30 pm (3 years ago)

    Oh gosh this struck a chord Alison. I hate scans, always have. We received horrible news at my 12 week one for my first pregnancy. Ultimately we had a medical ternination, we were told our little girl was too sick to live. I will always wonder what if though and question if we would have been the lucky ones who defied the odds. It still breaks my heart xx

    Reply
  3. Karen
    July 31, 2014 at 7:52 am (3 years ago)

    Such a beautiful post. It bought a tear to my eye, and then those gorgeous photos just make your point so wonderfully.

    Reply
  4. normaleverydaylife
    July 31, 2014 at 8:38 am (3 years ago)

    This is a beautiful post. I'm sure your honesty about your experiences will be an encouragement and comfort to others facing similar situations. Your little boy is precious!

    Reply
  5. Alison Bloomer
    August 1, 2014 at 8:38 am (3 years ago)

    Thanks Jane. You are doing more than OK by the sounds of it. Your baby girl is gorgeous xx

    Reply
  6. Alison Bloomer
    August 1, 2014 at 9:28 am (3 years ago)

    I remember reading about your baby girl – how tragic for you all. Sometimes life is just damn cruel xx

    Reply
  7. Alison Bloomer
    August 1, 2014 at 9:34 am (3 years ago)

    Our story worked out – sadly not the same for many. Thanks for the lovely comment x

    Reply
  8. Alison Bloomer
    August 1, 2014 at 9:35 am (3 years ago)

    Thanks so much. I think he is so precious too xx

    Reply
  9. Amy Ransom
    August 1, 2014 at 11:08 am (3 years ago)

    Your last paragraph sums it up completely. You would never have been afraid of your lovely little boy. In our days of technology sometimes we can know too much too soon. You obviously have a lot of courage and determination. Beautiful post. #PoCoLo

    Reply
  10. Therese Gilbert
    August 1, 2014 at 1:03 pm (3 years ago)

    Thank you for a very well written post. I found it heartbreaking, but at the same time I find myself agreeing full heartedly. Nothing is for certen until baby is born, and even then we might never get the answers.

    You have a beautiful family!

    #PoCoLo

    http://www.erfmission.com

    Reply
  11. smithsholidayroad
    August 1, 2014 at 8:14 pm (3 years ago)

    Gabe is a spunk! Thanks for sharing such a real,emotional story. I have a 9 year old son with CP ( and a 6 and 2 year old) and found your blog via Ellen and Max.

    Reply
  12. Victoria Welton
    August 3, 2014 at 9:20 am (3 years ago)

    What a truly beautiful post that makes you stop and think. I need to show this to my other half. My nephew has a chromosome deletion. I know that, due to chromosome abnormalities, I will have to have a CVS when I eventually get pregnant. I did with Grace. But this, this does make you think. Gabe is so beautiful. Thank you for linking to PoCoLo :) X

    Reply
  13. Sian PottyMouthedMummy
    August 4, 2014 at 12:25 pm (3 years ago)

    Oh wow, what a beautiful post lovely. I just felt knots throughout this. And lovely pictures to end it off with. Just stunning xxx

    Reply
  14. Wally Mummy
    August 4, 2014 at 5:53 pm (3 years ago)

    Oh hunny – this is beautiful xx what an amazing journey you've all had xxx

    Reply
  15. Mardy Kerrie
    August 4, 2014 at 6:01 pm (3 years ago)

    This is a lovely post. I have been very lucky not to experience this – each and every scan there is always a 'eek' moment, like 'say something say something' – can't imagine what you must have been through, a real test of your strength I am sure. Gabe is bloody gorgeous by the way. :) xxx

    Reply
  16. Alison Morley
    April 19, 2016 at 8:53 am (2 years ago)

    Just stumbled across your blog. Absolutely beautiful post. So many parallels with my own story – I knew the feelings you so eloquently described so well. Thank you for sharing this. Gabe is just adorable too! x

    Reply
    • Alison
      April 25, 2016 at 8:31 am (2 years ago)

      Just read some of your lovely blog – crazy journey isn’t. But so lovely in so many surprising ways. x

      Reply
  17. Holly
    April 20, 2016 at 5:41 pm (2 years ago)

    I felt the same way when I learned my son had spina bifida. He is due the first week in May so quite soon I can’t wait. My daughter is almost 2 years old and I used to lie in bed at night worrying about how she would take it being a sibling to a child with special needs. Then I realised it doesn’t matter she isn’t even two yet. I found out several weeks earlier in December last year.

    Sorry I just found your blog via Netmums and saw this post.

    Reply
    • Alison
      April 25, 2016 at 8:19 am (2 years ago)

      Hello Holly – it is such a worrying time and so much to get your head around. I can imagine how scared you are and it does take a while, but life with a child with additional needs does settle down and is strange and wonderful all in one. There is a lovely spina bifida blog called http://www.whatdoyoudodear.com/. If you ever want to chat, just shout. I wish you all the luck all the world xx

      Reply

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