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?
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?
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?
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?
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? 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.
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.
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.
|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!