Baby Loss Awareness Week 2018: Our story

Baby loss. It can happen at any time – miscarriage, birth, or infancy. It’s never easy.

It’s something we don’t talk about often enough.

Why do we traditionally get advised to wait until we’re 12 weeks pregnant before we tell anyone the exciting news? It’s because at 12 weeks the risk of miscarriage falls significantly. But why does society make that taboo? I’m not advising if you find out you’re expecting you should Insta story those two blue lines with a heart GIF, but there is no shame at all in telling anyone, such as close friends and family, if you want to. Because if something wasn’t to go as planned, if you lost your baby, – wouldn’t you want them to know? If you didn’t tell anyone, who would your support network be?

We nearly lost Clara, very very nearly. The statistics were unbelievably against us. And I want to share more about this in the hope that even if just one person reads this who may be going through this, or has experienced this, I want them to know they aren’t alone. That it takes time to process feelings. There’s no shame in tears, anger, and numbness.

Here’s our story. (Trigger warning for anyone affected by near baby loss, or baby loss). 

On January 10th I wrote a blog post called “A Fighting Spirit”. It ended like this:

I write this as she’s down in theatre. Writing keeps my head balanced, it’s why this blog began. It allows me to think rationally, and it passes the time.

This afternoon is a big deal. This surgery will dictate Clara’s life span – from days to years. We, along with Mr Lee, have no idea of what the future holds until he literally goes in to have a look. If Clara’s 25cm of iffy bowel is viable, she’s viable. If it’s not, then her time with us is near its end. Prior to the op, the surgeon had talked to us about palliative care. He’d offered for us to speak to his colleagues at Helen and Douglas House about how we could make Clara’s time, if it came to it, as comfortable as possible. We declined – this isn’t an option we want to process as reality. Our little girl is a fighter, she’s fought back before and she can fight again and we’ll continue to give her strength for as long as she needs us and beyond.

We love you Clara, you can do this.

This was Clara’s second life saving operation. Her surgeon had sat down with us before the operation and drew out various possibilities – but none of them could be predicted. It all came down to the remaining 25cm of small intestine (remember she should have had 200cm+). The word viable was thrown around a lot. If the bowel was viable, she was viable. If it wasn’t, she wasn’t. I heard the word literally – there was no emotion associated. It was a fact after all. I never saw a problem with the term ‘viable’ until I relayed the conversation casually to a lady who worked for SSNAP and she was utterly horrified at the inhumane terminology. This was a brand new little life we were referring to.

I still find it hard when I see campaigns supporting Helen and Douglas House, even simple things like the cash tins next to the till in a retail store. Now that probably reads like a horrible thing to say. I don’t mean it how you might think. I’m grateful these facilities exist for those who need them, but it’s a reminder we almost did. To this day, I am glad we declined that meeting.

The nurses took photos of Dean and I, incredibly upset, holding Clara (pre-operation) as best we could with all her pipes and lines, using a digital camera. They had the photos printed and put in an envelope in the drawer below Clara’s incubator. Dean was adamant he didn’t want to see them. I took them home for safe keeping. Just in case.

But just because we refused to speak to the professionals, it didn’t make it any less real. Palliative care was a possibility – we had to face the facts, there was no point being in denial. When you’ve got hours to pass, waiting for your baby in surgery when the outcome is literally life or death, your thoughts start to build thoughts of their own.

I remember being told we could decide what we wanted. Really?! Could we?! Because right about then all I really wanted was to take my baby home and cuddle, waking up from the bad dream. What they meant was, we could decide if we wanted to (hopefully) have a few weeks with life support, or a few days to a week with nothing meaning nature would run its course. My initial thought was hang on a second – when you say nothing do you mean nothing? She couldn’t feed as her gut couldn’t be used, so are you saying she’d literally starve to d-e-a-t-h? I still find it hard to write that word in that sentence when ‘she’ associates with my daughter. I didn’t dare ask the question, I couldn’t face the answer. But I knew the answer. I was not in any way ready to make that decision. Thankfully we didn’t have to. Thank you. Thank you. Thank you.

A few frantic phone calls later and my mum, dean’s mum and sister came up to the hospital and sat in the white private room with us. I don’t really remember the conversation, what we talked about. But I remember a few things. I remember sobbing into my mum’s coat, clutching Dean’s hand, saying “I just want to take my little girl to school. I want to teach her to read. Why can’t I bake with her? I want to read to her.” It probably wasn’t that coherent, it was a whirlwind in my mind. I was thinking of all the romantic visions of having a child of your own. I was numb, angry, upset, sad, and empty. I felt so much and yet so little.

I then thought about life as I knew it – and my first selfish thoughts materialized. How do you go back to work, to a job you love with so many people you know, when you’ve lost your baby? How do you address the fact you’ve returned to the office much earlier than expected? How do you answer questions from people who assume your baby is at home, or in childcare? How do you do it? And then came the question I asked myself that I’ll never forget. How do you plan a funeral for a baby you don’t really even know? It breaks my heart even now, reliving that thought. Again, that sentence reads horribly. But I didn’t know her – she’d been in an incubator far more than she’d been in my arms. She was primarily in the care of the hospital, not mine. Her likes, her dislikes, her little nuances that made her her? I didn’t know them. I pictured a church I knew well in a nearby town, stood there, looking down the aisle, I saw myself, then the thought was gone. I wasn’t entertaining it. But I still didn’t know how I’d do it. It was the first time I’d said “It isn’t fair”. It wasn’t. It didn’t make it okay. And then I had to walk out of that room and, eventually, reluctantly, go home that night – there are no beds for parents on NICU. The hardest walk and drive I’ve ever done. I was numb.

My mum was due to go on a girls trip to Prague that weekend for her joint 50th birthday celebration. She didn’t go. Clara’s life was in the balance and they were clearly preparing us for the outcome they expected. I promise one day I’ll re-pay that trip. Maybe Clara and I could go with her.

Before Clara was even known to be poorly, except with jaundice, we brushed close to someone else’s experience with baby loss. The midwives on the ward were slower to come around than usual, it took a long time for anyone to appear. When one lady did, she apologised and explained. The only other woman on the ward with me had just lost her baby. It was incomprehensible at the time. We were just waiting for Clara’s jaundice levels to drop so we could plan going home.

So whilst we didn’t lose our baby, we’ve come very close. And it’s important that awareness is raised about experiences like this too. Because whilst we are incredibly incredibly lucky to have our little girl at home with us, asleep in her bed tonight, we’ll always be haunted by the thoughts we had that day and the unforgettable heart ache that hung heavy that night. For whilst I didn’t lose my baby, the journey that nearly was still takes time to heal.

1 thought on “Baby Loss Awareness Week 2018: Our story”

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s