real life

'The one hour I spent with my daughter was the most perfect of my life.'

WARNING: This post contains themes and photographs that may be upsetting.

As a mother, the most beautiful days of your life are the days on which you welcome your children into the world. There is no feeling more overwhelming or more awe-inspiring than the moment you set eyes on your child for the very first time. Your heart swells with love you never knew you had and you know in that moment that your life has been irrevocably changed.

But what about those mothers who never get to bring their babies home? What about those mothers who go into hospital with a full belly and leave with an empty heart?

One year ago, I was more terrified, more upset and more heartbroken than I had ever been before. As I made my way to hospital to give birth, I couldn’t comprehend how meeting my daughter for the first time could be wonderful when I knew as soon as she was born, she would be gone.

giving birth to a terminally ill baby
"Our daughter was diagnosed with Thanataphoric Dysplasia, a fatal form of dwarfism." Image supplied.

Just one week earlier, we had walked into our 19-week ultrasound full of excited anticipation to see our daughter on the screen, and walked out with our hearts breaking. That day the doctor uttered six words that would change my life forever “honey, she’s not going to survive”.

Our daughter was diagnosed with Thanataphoric Dysplasia, a fatal form of dwarfism. We were told that it was very unlikely our daughter would survive the rest of the pregnancy, and even if she did, she wouldn’t survive very long, if at all, once she was born.

In the days that followed we had to make the decision no parents should ever have to make, did we continue the pregnancy, knowing our daughter could pass at any stage? Or did we choose to let her go now so she never had to suffer? We had to make the decision but what other decision was there? It wasn’t a matter of if our daughter would die, it was a matter of when.

So many stories you read of loss are sad, they’re gut wrenching, they pull at your heart strings. I’m not saying my story isn’t sad, it is, but the story of my daughter’s birth is one of pure joy and elation.

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giving birth to a terminally ill baby
"All I wanted was to meet my daughter before I had to say goodbye to her." Image supplied.

You may say heartbreaking, but I say it was beautiful.

Despite everything I’d learned, I was absolutely determined my daughter would be born alive. I wanted nothing more than just a little time with her, it could be seconds, it could be minutes, but it wouldn’t be hours. All I wanted was to meet my daughter before I had to say goodbye to her.

My birth plan only had two parts, I wanted a natural labour, and I wanted her only time on earth to be filled with joy.

Given I’d had a caesarean with my son, I knew this was my only chance to do things naturally. I felt I owed it to my daughter to bring her into this world drug free and in the safest way possible. I knew that labour would hurt, but in my mind, I couldn’t see the physical pain of labour hurting any more than the emotional pain I was already feeling.

giving birth to a terminally ill baby
"What about those mothers who go into hospital with a full belly and leave with an empty heart?" Image supplied.
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The day before I had instructed my family, “You are not allowed to cry while she’s with us. There will be plenty of time for tears afterwards, but while she’s here all I want her to feel is pure unconditional love and happiness”.

The labour was long - it was painful - the contractions started around 8pm on the Wednesday night and I laboured all night long until at 6:29am on Thursday the 9th of June Isabel Anahera Irvine quietly slipped into the world.

She was lying on the bed in front of me.

“Check her heartbeat,” I said,“Is she alive?”

The midwife put her finger on her chest “yes, she is”. My heart burst with joy, she was here and she was alive.

As I looked down at her I whispered, “She’s perfect, she’s just so so perfect”. Anyone else looking at her would see her short limbs, her bowed bones, her compressed bell-shaped chest, but to me she was the most beautiful thing I’ve ever seen.

Listen: This Glorious Mess discuss what to say to a loved one who has lost a child (post continues after audio...)

The midwife gently placed her on my chest, we were skin to skin as every mother and newborn baby should be. I can still remember how she felt, her tiny weight resting on me. I have the most beautiful picture of the two us just after the midwife had passed her to me, there is one single tear running down my cheek, a tear of pure joy for my beautiful daughter who was right where she needed to be.

I turned her over to feel her heartbeat, if I close my eyes I can still feel it in my fingertip, gently beating away, the most precious thing I have ever felt.

I turned her back over and nestled her little body against mine, her head resting on my heart. I instinctively put one hand on top of her, cradling her gently, I could feel her back going up and down ever so slightly. Every so often she’d do a little wiggle, I felt her legs kick, her arms twitch, she moved her head slightly against my chest. Every single one of those movements reminded me that she was still with us, she was giving us the gift of time and we cherished every single moment we had.

giving birth to a terminally ill baby
"That hour was and forever will be the most precious and beautiful hour of my life." Image supplied.
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Just over an hour after Isabel was born I turned her over and felt her little chest but this time there was nothing. Quietly and gently the tears started slipping down my cheeks. I wrapped her in the blanket and cradled her in my arms like I would any newborn baby. I took in every part of her, her perfect little fingers and toes, her delicate button nose, her beautiful little lips with her tongue just peeking out, her soft fragile skin.

That hour was and forever will be the most precious and beautiful hour of my life.

You say heartbreaking, I say beautiful.

Mamamia Pregnancy Loss Awareness Week

You can download Never Forgotten: Stories of love, loss and healing after miscarriage, stillbirth, and neonatal death for free here.

Join the community of women, men and families who have lost a child in our private Facebook group.

If you or someone you know has lost a baby, and is looking for support, Mamamia urges you to contact SANDS.