‘Three days. Three days to decide whether my son would live.’

Video by Mamamia Women's Network.

Content note: This post details the loss of a child and may be confronting for some readers.

It was 2016, and I was four months pregnant with my son, talking to my mum on the phone about articles I’d been reading on parents aborting foetuses with potential Down’s syndrome.

“I could never do that,” I said. “Not for Down’s syndrome. It’s the least of my worries should my child be disabled.”

For some unknown reason it has always entered my head there was a possibility I would have a disabled child, not because of genetics, but because it’s not entirely impossible for anyone: I would mentally prepare myself should it ever occur, I thought.

But I wasn’t prepared.

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In 2012 I lost twins in a drawn-out miscarriage at 10 weeks. It meant that for my next pregnancy, two years later, I spent the first five months intensely frightened of seeing a dead baby on the ultrasound screen. Not until I felt my daughter kick did I dare go and see if she was indeed alive and growing.

After my second daughter I felt stronger in the knowledge I could carry a child to term more than once. I’d had two C-sections: one overseas and one in Darwin.

I knew now that no one in The Territory would allow me to give birth naturally: a bicornuate uterus, two breech babies and no spontaneous labour (I was always being cut at 38 weeks) meant I had no chance to sway them.

So I travelled 3000 kilometres to Adelaide, South Australia, to see an obstetrician who was willing to give me a chance. I travelled with years of reading scientific papers, books and articles on VBAC’s and breech birthing, as well as many conversations with women and a great deal of self-confidence in my natural abilities under my belt.

But I wasn’t prepared.

A short meeting with my doctor turned into ultrasounds, MRI’s, an amniocentesis and genetic counselling services.

My beautiful boy wasn’t forming properly, they said. The arteries in his brain weren’t fully formed, he had a calcified spot in his liver, he had two club feet and his limbs were not extending; he wasn’t opening his fingers.

“You have three days to decide, because after 23 weeks it goes to an ethics committee,” they said.

“We’ve seen people abort for much less,” they said.

“You are the fifth person we’ve spoken to this afternoon,” they said. “It’s YOUR decision.”

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I began to have anxiety attacks and dizzy spells. Then my boy would kick me and I’d beg him, "Just open your hands, baby. If they see that then this is over. You’ll be fine."

But he wasn’t fine.

My husband flew down.

"Are you happy to take this?" said the nurse.

"No. I am NOT happy to take this," I retorted before bursting into tears for the next half an hour whilst she sat there, increasingly uncomfortable.

Every time I tried to put the pill in my mouth (the pill that would stop my placenta from feeding my son) I took it out. Once I’d done this it would be the beginning of the end. His end. It was my decision.

How was I supposed to do this?

I didn’t fucking want this!

I never fucking asked for this!

I sobbed uncontrollably and begged my husband to pray for our boy and for me. I was so certain I was sending myself to damnation.

Then I thought of my son and the pain he would have to live through. How we’d have to move state regardless of employment to meet his needs. How physios, OTs, doctors, you name them, would be poking, prodding and pulling him constantly.

I thought of my two daughters waiting for me at home and how they would never have the attention they required because of everything I would have to do for their brother.

I thought of my husband and I, already so strained, and the fact I’d been preparing to leave him before I found out I was pregnant again. I thought of everything our lives would be. Me, the breadwinner, not being able to work and how staying at home to take care of our son’s medical needs would distance us even further because he just wouldn’t understand it all.

Then I thought of my son again. The geneticist had said an 80 to 100 per cent chance of severe disability, seizures, an uncertain lifespan, if he survived at all.

If I held onto him the one thing I knew for certain was his life would be full of pain and difficulty.

So I took the pill.

That night, I lay in bed as my son kicked me, letting me know he was still in there. This did not make me happy anymore. It was the most distressing feeling. I begged him to stop.

The next day I went into the hospital and they gave me misoprostol to bring on labour, the same drug I took for my lost twins. I went as natural as I could, for as long as I could. The nurses said this kind of labour, at 23 weeks, was different because the pain did not ebb and flow as normal contractions. It was constant.

The 10 hours of intense labour pains were both bitter and sweet. I was getting what I wanted: a natural birth like I always knew I was capable of doing.

When my son was born I knew, from an ultrasound, his heart had stopped but aside from that everything was normal. I transitioned in labour like everyone else, I pushed like everyone else, I changed positions like everyone else and I felt a release like everyone else.

The midwife cleaned him and wrapped him and then my husband and I held him. We were flooded with emotions of love and awe… just like everyone else.

And we truly saw him, smelt him, rubbed our cheeks against his, kissed his forehead and his face. Wrapped him in all the love we had to give.

His legs were bent at the ankle and the knee, two opposite 'Ls'. His arms and his little hands were enclosed upon each other. His face… was exactly like his sisters.

Listen: What to say to someone who has lost a baby. (Post continues...)

We saw he belonged to us.

We saw, in no uncertain terms, that we had saved our son from a harsh life.

I thought back to the conversation with my mother two weeks earlier and I thought that two weeks ago I knew nothing. I promised myself that I would never again judge any woman for any decision she made about her body. Whether I agree or not, what’s important is the autonomy we have over ourselves.

My son is looking down on me and he forgives me. He loves me and he is happy. He has told me so. I believe him. I have to.

Some days I forget, and some days there are triggers that floor me for a while.

But the one thing that sticks with me through this, most of all, is how, with constant advancements in medical science, my daughters will likely be presented with even more options on whether they keep their pregnancies for this reason or that.

I know how my decision to let my son go has messed with my mind. I’ve had to work so hard to be okay with it: To heal, to forgive, to change my perception of what I chose to do and not see it as a murder or 'getting rid of' my baby boy for convenience.

I would have him back in a moment if I could be assured that he was okay. He was so broken, did I mention his arms, his legs and his little brain? I don’t know how else I could ever have eased his pain but to free him before he suffered so immeasurably.

So I know now I have to prepare my daughters for the bombardment that we women receive when pregnant.

We ultimately must be given more autonomy over our bodies and choices and we should not be judged for making the decisions we do in the best interests of our children - those already living and waiting to be born.

If you or a loved one is struggling with the loss of a baby, help is available at SANDS.

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