*From the homonymous chapter from the book 'Empty Cradle Broken Heart' by Deborah Davis
When I received the report from the Nucal Translucency I prayed we weren't the 1:4, then I prayed that if something had to go wrong at least it might be a fatal condition, when I received the CVS results I prayed that she would be like the 60% of the down syndrome babies and miscarry naturally without letting me the choice. Then I stopped praying and I was just longing to die.
We knew what we would have want from her when we started investigating. I knew that I was making the right choice for her and our family, despite the aching heart and my egoistic wish to hold on to her no matter what often obsessed me. I knew I couldn't do this to her and make her suffer for her whole life. I knew this was worth my eternal pain and unfillable void in my heart. By saying this, by specifying we are convinced about our choice it doesn't mean I'm not tormented by doubt and guilt and nightmares sometimes.
'You may wish that God had decided for you.
The decision-making process doesn’t end with a decision. It is afterwards that you can comb through all the facts and come to terms with it.'
The only thing that saves me from going crazy and stay stuck in guilt is that my heart is utterly sure about having chosen 100% for her sake.
‘Love does not ask: will I love a struggling and limited child? Love asks, what will I do so that my child never suffers?' wrote my sister-friend Emily about her agonizing decision.
After reading this chapter on the book I convinced myself I wouldn't want anymore that God or anybody else could choose for me.
'You were in the best position to determine what was best for your baby. Our choice was based on our intuitive knowledge of our babies, what they were like, what they could tolerate.
This made the decision right for them.
It is a burdensome responsibility to bear, but our babies would want us, not strangers to decide.
We fulfilled our duty, we took our chance to be the best advocates for them.'
Feeling bad and feeling guilt is normal, but this is not because we made a bad decision, but because we had to make a tough, painful decision.
'Your decision did not cause your baby’s death, your baby’s condition, which presented those options, was the cause'.
'The urge to hold on to your baby at all costs can be so strong,
Ida Saoirse Scherer,
our first baby girl, who was born and died at 16+5 weeks on the 30th November 2017.
Resources about Termination for Medical Reasons
Sister-friend Emily writing for her first son Amari Regan (Fragile X Syndrome)
Katrina's blog for her second daughter April Rey (Trisomy 13)