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T.O.P. (Hayley's Story)

That's what I saw typed on my notes as I sat across from the registrar. She was talking to me about my latest missed miscarriage, what my options were, what they could do for me, etc... T.O.P. It took me a moment to figure out what this meant, and then I realised: Termination of Pregnancy. Luna. I had stopped listening to the doctor. I was too busy dealing with the gut punch those three letters stood for. Medical terms can be so stark and cold. What I really wanted to do was stop the doctor mid flow of telling me I could bring in any tissue samples for lab tests, once I actually started to miscarry, and stab a finger at my notes to tell her ‘That's Luna, we wanted her! We were fighting for her, we really were! We were on her side the whole time!’

When I went for my 12 week scan with Luna, we'd already experienced a missed miscarriage once before and I'd had two other early miscarriages. By then we knew that just because you make it to a 12 week scan, doesn't mean you'll be walking out of that room with the news you want, clutching your first smudgy photographs of your baby. We were apprehensive, but at the same time felt we'd had our quota of unfortunate and painful experiences, so surely it would be fine, right?

It was a quiet day, I remember feeling surprised that they did scans on Sundays. It was grey and wet outside, very dreary, but we were excited. The technician called us into a room and I got up on the table, she squeezed the warm gel on my abdomen and she placed the wand on top. She started to move the wand around, looking at the screen, saying nothing. That's what gets you, the silence. I knew. There was something wrong, the baby had died, it'd happened again. When she did finally speak, she said ‘I'm sorry, but there's a problem with the baby’. The pain is unimaginable when you are told this, it’s just excruciating. ‘Is it dead?’, I was not prepared for what she said next, ‘No, it's alive, but there is a problem. There is too much fluid, there are cystic hygroma's, at least one, but possibly two on the baby's neck’. Of course I had no idea what this meant, and she wasn't giving much more away (I get it, she's not a doctor). I wanted to run. Hide somewhere. I felt pure terror. I lay there, my head swimming, panicking - I felt like shouting stop, so that I could get out of this nightmare. The technician eventually finished and we went to another room to have blood taken. The midwife was calm and gentle, thank God. She steadied us a little. She explained we would be called to make an appointment to see the consultant in London.

Less than a week later we had another scan with the consultant. Turner's Syndrome was confirmed a few days after this. A common sex-chromosome disorder. It can happen to anyone, but it happened to us. Babies with Turner's are always female. It's a spectrum disorder, like Down's Syndrome. It means either you could be severely affected by the way it impacts the body and brain, or lightly affected. This gave us hope. We decided to wait and see, give Luna more time, see if the fluid reduced over time, sometimes it does...she'd always have Turner's but we felt we could cope with that, we loved her, we'd give her a chance.

At what turned out to be our final scan, I could see what was happening, I didn't need a medical background to see that the hygromas were huge - as big as her head. They weren't diminishing, they were growing. But there was more. At least one hole in her heart (suspected, but now confirmed) and too much fluid throughout her body. The consultant pointed out her lungs, completely encased. The thick black line all around both lobes indicating fluid: ‘They are compromised’ Charlie had been making notes all this time, he stopped and looked up at this, ‘but if you can fix her heart...’ (we'd been researching this), ‘No. Without the lungs, you can't fix the heart. I still think you'll miscarry…but, if she did make it to full term and was actually born live, she wouldn't survive. She may live for a few hours, maybe a few days. No more.’ No more.

I was induced a few days later. We had gone over it all again and still came to the same place: survival is slim to none. If she survives at all, life will be short and she will essentially suffocate. We don't want that for her. We don't want her to feel any pain. It was time. I wasn't sure how I'd react to labour and giving birth to a baby that I knew wouldn't live. Would I scream and shout? Would I panic? Turns out, I was ok. I was super calm. I even enjoyed giving birth to Luna. Maybe it's that I knew this was the right thing to do. Maybe it was the anticipation of meeting this little mischievous wriggler, who had been trying to get there, had the odds stacked against her, but gave it a go. I don't know. We surprise ourselves in our darkest hours and even the smallest chinks of light can break through if we're lucky.

I delivered Luna quickly. The medication kicked in straight away, she was out within 4 hours. We stayed in hospital with Luna for three days. Benjamin visited, and Luna's Granny. We took photos and spent time cocooned in the hospital. But we had to leave at some point and Benjamin needed us. I made them come and collect Luna while we were still there. I had this fear of leaving the room with her still in it, it just didn't feel right. We said goodbye, they took her away, we left the hospital. We got home and the chasm of grief opened. I lost my voice. Everyone apart from Charlie, Benjamin and my bereavement midwife got met with silence.

Eventually my voice came back and we started to figure out what next. Luna is a part of our ongoing lives, a part of our family. She's a daughter, sister, granddaughter, niece, great-great niece and always will be. Our love for her continues to grow, something I didn't expect. Everything we did was because we love Luna. She may have been with us for the briefest of time, but her impact has been colossal. Everything has changed. She has taught us so much about life, ourselves, love, memory, family - how did such a small, poorly baby do that? Magic.

This is what should be in my medical notes. This is what every doctor and midwife should be able to read. The story behind the T.O.P. Luna's story. Our story.

 


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