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Heart Defects- The Story of Sam

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Dear Sam,

I found a Mother’s Day card from your beautiful aunt in your room the other day. I often go in there to think of you and to look at your little face and remember those few precious hours we had together. That it was real.

The card read, “A woman becomes a mother the first time she hears her child’s heartbeat”. So true.

Little did I know that the memory of seeing your beautiful heart on the screen for the first time and hearing it beat so strongly would bring tears to my eyes today.

I didn’t know then that it would be the thing that would keep your daddy and me from taking you home into this very room. 

I’m supposed to be telling the story of you, Sam, my beautiful boy. But I find it hard. To start and see a finish on paper.

Please know that my love for you goes beyond this letter and will forever shape my future regardless. You are always a presence in my life.

To encompass what you’ve meant to me in to letters and words- it’s an impossible task and so I apologise for attempting to simplify what I feel into words.

Most importantly to me, I hope you never doubt how much you were wanted and loved, my son. 

I remember having our anatomy scan at 21 weeks and I saw your face up close. You had the most gorgeous big lips. You were perfect.

They couldn’t see your heart. We had to come back in a week, but we were given the ok for everything else.

I just assumed you were perfectly made. That assumption used to seem cruel. But with time I know it was a blessing.

Your daddy really let go and embraced you and I’m grateful for that.

After the scan, we made a playlist with your Dad’s favourite music and played it for you through headphones that night.

We pictured ourselves in a few short months holding you and playing this music to you again as visitors came in and out and cooed over you.

They would congratulate us for creating such a beautiful baby while the tunes played softly behind us soothing you and reminding you of the warmth of my belly. It was my favourite memory of us as a family. 

The next week I went in to get the scan on just your heart. I was alone. I was so confident you were perfect. I remember seeing your beautiful squirmy face on the screen and smiling wondering if everyone else knew how cute you were.

The sonographer was taking ages and I started to dose off, relaxed, naïve. But more and more doctors came in and panic started to reach me.

I asked if everything was ok and the women looked at me with so much pity and just said, “Well no it’s not. If you have someone that can come be with you that would be good”.

I felt the room spinning. I couldn’t breathe. So many doctors in and out. No one could figure out what was going on with your heart and it was called a “mess”.

Things were backwards, holes and vital parts were missing.

They used you as a teaching moment for several doctors.  I couldn’t believe it.

I was frozen in fear and my world had split in two. There was the old me, and that future she had, and then there was the new one I was enduring. An alternative universe I heard of but never prepared for.

They sent us to a specialist to have a look at your heart in Sydney.

I didn’t sleep at all. I just rubbed you all night and wanted to hold you as you kicked away inside me, so warm and happy and oblivious to the cruelty of the world around you.

The doctor was lovely and kind, but the prognosis was not.

You had multiple severe defects and indeed your heart was a mess.

In that moment, I entered this world or club no mother should have to enter. A world that requires a mother to make a choice.

To be selfish and let you enter a world full of pain, open heart surgeries, loneliness in a plastic box without me able to cuddle you and tell you it would be ok.

The most likely scenario for you was an early, painful and tragic death on an operating table or future multiple organ failure. I couldn’t do that to you.

That is a fact that many cruel people in this world love to make me feel guilty about: my mercy for you.

The picketers on the street. The news in the headlines. Old friends on facebook.  

But I am not alone, Sam. I am part of a group of strong women and I’ve become friends with many through a shared loss.

I’ve heard countless stories of mothers who have walked solemnly and secretively in my shoes.

I know that I chose this path and this pain for you like they have.

I chose the pain so you wouldn’t have to feel any.

I hope you know I took it all on so you would know nothing but love and warmth.

The ultimate sacrifice to protect you, my very much loved son.  

I heard doctors call it a decision I had to make with your daddy. How could any one make a decision? But time was ticking.

You see Sam, there was a deadline on this decision and I was never going to be ready to say goodbye. How could I be expected to be? But laws and policies must be followed and time moves on.

I went to the hospital with your daddy on July 9th.

We were admitted into the labour ward with the other happy pregnant women.

I wasn’t meant to be there to meet you yet. It was a surreal experience and my mind detached from my body. The labour to meet you was bitter sweet. I was so unbelievably scared.

I have some memories but I’m sad I don’t have more. Just flashes, sounds, smells, moments captured from a distance.

The doctor came in to look on the sonogram. Your little heart didn’t survive the labour as predicted.

The hardest part of the day was hearing the words the you were no longer alive.

Now that moment is seared in my mind, never to be unheard. Never to be unseen. You came quietly after that. It was July 10th.

I guess my body knew it was time to say goodbye.

The room was dark and the hustle of the day shift had seized and it was calm. It was just after midnight when you were put into my arms. I was shaking and frightened. But you were beautiful and perfect and you looked like your dad with long fingers and legs and gorgeous dark skin.

When I held you against my chest the world felt different. Your dad laid next to us and we cried as a family.

Time kept moving and the world went to sleep. But not me. I couldn’t. I was afraid of losing one moment with you. I needed to memorise it all before it was gone.

There are no words to describe the feeling I felt when the nurse came to get you in the morning. To see you go and know I will never hold you again. I panicked.

I kept wanting to ask for you back, for more time. But that was not possible. I no longer recognised the room I had spent 24 hrs in.

I thought for sure I had been moved into a different room once you left me.

I no longer recognised the universe in which my life operated. I wanted out of there if I wasn’t to have you.

When we left, we left empty handed. We left without you. We didn’t come home to a house with a baby like we were meant to.

No “congratulations”, just “I’m so sorry for your loss”. No baby toys and cards, just flowers slowly wilting and dying with time. No visitors to say hi to you, Sam, just quiet footsteps on the porch of people dropping food off. 

Those initial weeks were torture. But your daddy was amazing and loving and we have you to thank for bringing us so close in that moment. That was beautiful and sad at the same time.

The reminders of your loss never ended. My milk coming in. The recovery. The birth and death certificates. Your cremation. The expensive payments for all the scans and specialists and second opinions. The genetic tests. The autopsy. The maternity dress order that arrived late. Putting you to rest under the Magnolia tree, your absence at Christmas.

They all kept coming and continue to.

The friends I planned to raise you with having baby showers, their growing bellies and eventually meeting their perfectly healthy babies.

All of these reminders of your absence were like weights being added to a rope, pulling at the hole in my chest. 

A year has passed since holding you in my arms. Some moments it seems like yesterday and the pain is raw and real and others it can feel like a lifetime ago.  

I guess that is the pendulum swing of grief.

Somehow everything has changed yet nothing at the same time. I can find joy in things again but it doesn’t mean I’m not thinking of you in that moment.

I used to be afraid of moving on from you. But I know now that will never happen and the grief just morphs. It is always there, just in different forms.

I’ve thought about it like a tree.

Every year I gain a water ring. As time moves on, losing you is still there, massive and visible, but other rings will start to form around it.

You are still the core and ever present but not as visible to others. Just me.

My fear now is that others will move on from you and they’ll forget you or at least believe that I should move on and forget.

That is the worst part of looking in to the future.

That people won’t include you in conversations or special moments. That your name will become taboo with time. But please know Sam, I will always include you regardless if I say it out loud or not. You are forever there with us. 

I’ve learnt a lot through losing you.

It’s a shame life works that way, but they are life’s most powerful lessons.

I can say that today, I truly am grateful for this hard journey. You were a gift. Even though your loss is still so painful I believe that it was a gift too.

I’m an entirely different person but I’m starting to be ok with the new me. It’s not the path I would have chosen, but I’m learning that I have control over where this path takes me now. I have power over how I let it shape me, my choices and my life. 

I said earlier to you that I was afraid of writing this and it’s been a necessarily slow journey.

It was impossible then to see a visible beginning and an end to this letter.

I thought it meant a beginning and an end to you, your life, your story.

That was too much to grapple with then. But it is not true.

You’ve changed me and will forever send a ripple into the universe through me.

I refuse to let that be negative and I promise to let you live and spread light into the dark through me.

So no, your life doesn’t end here. It’s really just the beginning. I know now that this letter is not saying goodbye, but to let you know you are coming with me into this future, always in my heart and mind.  

Love always,

Your mommy

This story was submitted by a wonderful and brave mama, Jade Pierce.

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