On heartbreaking decisions…

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.

  • Dee

    As always, you articulate yourself clearly and beautifully. You’ve managed to find words to describe the indescribable, and that, amongst many other reasons, is something I admire about you, Waz.

    No-one ever expects to bury a child, and especially not before getting to meet them. There seem to be so many unfair moments, from diagnosis, to the realities (like cancelling the pram), and there’ll be some even tougher moments to come, but as always, you’ll have my support, in whatever form that needs to take.
    I’m glad you’ve reached a decision that you know is right for you, Tan and the kids. Much love to you all xxx

  • Marg H

    Precious, precious family …. you are all much loved by God and He has His everlasting arms around you all. We stand with you and by you in the journey ahead and continue to pray without ceasing.

  • Christine Tuddenham

    Because you believe in God, I can say this. You WILL meet her one day. Because one day, you will hold her and she will laugh, she will cry, and she will say “I love you daddy. I love you mummy” and you can stay with her for eternity in Heaven. It won’t be now, as you expected, but it will happen, just like my family will meet F.

    Love you guys, you are stronger than I.

  • I read a similar story from another couple last year. Like you , they decided to wait and see. And while they waited, they relished every movement, every flutter. Mama sang to her unborn baby. Daddy read stories. They let the baby live until it died in utero, then they held it and cried over it after the induction. They bonded with the child, loved the child from the outside in for every second of life that it had. It sounds like you have the same heart, and I pray for your strength, your peace and for some measure of joy in the weeks to come. Bless you for sharing this difficult thing. Namaste!

  • Jen H

    I am so sorry for your loss. May you all be blessed in your journey.

  • Karolynn

    You are a talented writer with a beautiful and open heart, War. Oh, to be able to shed some light or comfort on this for you all. I keep thinking of your boys, and how fortunate they are to have you and Tan as parents…such deep capacity for love. May you all find the peace that passeth understanding as you walk this difficult road, and may your broken hearts heal and remain open. I sense your love and ability to express your feelings will pull you through this, and that the miraculous will reveal itself in some way in time. God Bless.

  • I’m so sorry for what you’re going through. No one can really understand the pain and heartache you’re experiencing. I went through a similar situation earlier this year. Stay strong and support each other!

  • I have no words. I want to say I’ll pray for you but I lack the confidence that my prayer could honestly help. Is it encouraging enough to know that people can possibly heal through your words? if so, that’s what I can offer.

  • Kristin

    My heart goes out to you and your family. I know it is hard to believe right now, but the pain abate. It will never leave fully, but it will become easier to endure. My sister-in-law lost a beautiful baby girl at 39 weeks. E was so active that she tied a knot in the umbilical cord. S still had to go through a delivery, knowing there was no joy at the end. E would have been 7 this March, I have watched S all those years and have seen how she has held on to her faith in God, and knowing she will one day be reunited with E, to get her through this. You are strong people, with a strong belief in our God. There really is nothing I can say to help, but hopefully sharing my sis-in-law’s story will bring you some comfort. You are not alone, and you have many people uplifting you in prayer. May that love surround you and comfort you in the dark days ahead.

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