If you haven’t already, please read this post first.
One week ago, Tan and I were still trying to decide what we’d name our baby. We couldn’t agree on a name. We’d decided to find out the gender, if possible, during the ultrasound we were so eagerly anticipating. The cot we’d been given was standing against the wall in pieces awaiting the decision about whose room it would end up in.
All of that changed in an instant last Tuesday. The days that followed the ultrasound were full of appointments and conversations with doctors and specialists; as much as I wanted someone to take the decision out of our hands, there was no one. The decision was ours alone to make. The doctors and specialists expanded the information we’d been able to gather on our own, but there wasn’t much more to find out.
Acrania is fatal. Our daughter will not survive. To add to our grief, we were advised that if Tan chose to carry to full term, there are additional health risks for her in this situation.
We’ve sat together, holding each other. We cried and talked, and cried some more. Friends and family have surrounded us and told us of their love for us, and their support no matter what decision we make.
When it came down to it, after seeing our daughter on that screen neither Tan or I could choose the grief of a surgical termination. I can totally understand and respect someone else in our situation making that choice, but we don’t feel able to bear the weight of that decision for the rest of our lives.
We’re booked in for another ultrasound at 18 weeks. There’s an infinitesimally small chance that the 12 week scan was wrong. We’ve been advised that the ultrasound provider has a stellar reputation in Melbourne, and people who are familiar with him personally told us that given his personal views, if he had any doubts about the diagnosis of Acrania he would have advised thus, and we’d have already gone through the process of another ultrasound.
Barring some kind of miraculous intervention, by 18 weeks, our daughter’s brain will have mostly or completely disintegrated, and this will be obvious on the ultrasound.
After 20 weeks, a miscarriage or stillbirth is registered with the Registrar of Births, Deaths and Marriages. At this point, if the results of the scan are as we expect, we’ll be spending Christmas and New Years in Sydney and Canberra with our families and friends, our daughter still with us. At some stage after the 20 week mark in January, we’ll be entering hospital for an induced labour.
We’ve been told that it’s likely that Tan would need to be induced even if we went to term; it breaks our hearts that to help ensure Tan’s health, we need to bring our daughter into the world early, and that whether it’s 22 weeks or 40 weeks, we’re confronted with the same devastating outcome.
As painful and difficult as this decision was to make, we feel that the choice we’ve made gives dignity to a daughter that we would dearly love to have in our lives, but circumstances prevent. She’ll be legally acknowledged, and we’re able to have a funeral for her, to provide closure for our family, as we release her into the care of our Father.
Tonight, the cot is still leaning against that wall. A cradle that will go unused sits beside me as I write. I had a conversation today with a funeral director, who gently explained our options. It feels like there’s something so incredibly wrong about preparing a funeral for a child who hasn’t yet been born. Instead of trying to choose a baby capsule to bring our daughter home from the hospital in, we have to choose a coffin. Instead of a welcome, we face a farewell.
Tan barely sleeps. I sleep fitfully. More than once in those early morning moments between sleep and waking I think it’s all a bad dream, and then reality sinks back over me like a cold damp cloak.
To all of you who have surrounded us with your love and prayers, and acts of kindness and cooking, we thank you from the bottom of our hearts. We appreciate this more than I can put into words.