Wednesday, January 13, 2016

"You would be able to consider termination" Microcephaly Awareness PT 1

"You would be able to consider termination" Microcephaly Awareness PT 1

Microcephaly - the condition that I think makes my children perfect, but doctors call it a deformity.
Microcephaly- the condition that may forever change our life, but will make it our normal.
The fear, the worry, the checking of milestones that typical parents don't live their life by. Our life? It's full of appointments, head measurements, milestone comparisons, and full hearts of love.

You see Microcephaly it means 'small head/brain'. A condition where the brain doesn't grow at a pace appropriate for their age/ or at all.
The brain doesn't grow - the head doesn't grow.
In both my children's cases it caused their fontanel's to close over too early, both of them had no soft spots by 2 months old. My 9 month old baby girl still has a head size some newborns are born with. My 3 year olds head is higher on the World Health Organisation Head Circumferance scale, but has still been diagnosed with Microcephaly. By higher, I mean the 3rd percentile!

That red dot, is where you will find our daughter, Arabelle;

I am ecstatic that so far, although with some slight delays here and there, some speech therapy, physio therapy and OT for my son which has helped immensely, my children seem to be reaching their milestones, although maybe slowly - they are! There are so many cases where children with Microcephaly don't ever walk or talk! That doesn't mean we're off the hook...
We know that as time goes on, brain development can slow down and change. We know that however they are learning to do things, it is taking them that little bit longer. We know that our son get's really frustrated because there are days where he struggles with finding words to say, yet other days he can talk fluently. There are days where my daughter masters skills, but then she doesn't. We've been there while our son could say over 30 words at one, but then only 5 words at age two. We know that by 3 months our daughter has a brain ultrasound, CT scan, Xray on her brain and blood tests and then put on the waiting list for an MRI.

I know that doctors can only see what's on paper, and tests rather then the potential my children do have. They have absolutely every chance any other child has.

So you can imagine the feeling of my heart being ripped to shreds when the doctor explains to me that with our next child I could consider a termination.

This is not about the moral choice of abortion,
This is about him looking at my children and thinking I should of had the choice to terminate them.
This is about him deciding that my children are probably not good enough for some people.
This is about society becoming so politically correct that you think abortion would be on my, or anyone's checklist.
That simple statement says to me that before my next child is concieved you already have a step by step list of what you think I should do;

A -According to you, life is more about what you can't do, rather than what you can do.
B- That as much as we tell ourselves it's okay to take our time, we live in a rat race craze society.
C - That societies obsession with perfect tells you that I should consider terminating an 'imperfect' child.

The step by step list goes on and I sit there with tears in my eyes too afraid to say something,
Not because of what lays ahead but because of just that one sentence "option to consider termination"

I learnt more about him than he will ever know  right then. I learnt so much about society, that it scared me.

1 comment:

Camille Griffiths said...

I can't imagine how you felt when the doctor said that to you. They need to go through some sensitivity training!