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PART 1 - Aria Rose, the tiny dancer

PART 1

I begin this blog having just recovered from what I will call my body collapsing from the weight of my worries. It was just a throat infection really, but my immune system fell to the floor as a result. I missed my biggest guy’s first day of Big School. I did not eat for four days and slept for as many. How does this even happen from a throat infection!

Let me take a step back. 2020 was a cracking year for us. Got lots of stuff done and we managed to keep an income rolling in. We had our health. Day care was free for a period; we did not have to homeschool and we got to slow down. I started my second business, Arlix + Hufie, with one of my most fav people in the world. And we had lots of fun. I fell pregnant with our third child, our first little girl. Totally blessed.

 Then, our world came crashing down. We had to make the gut-wrenching decision to terminate late, our pregnancy. With this decision followed an experience that drove us inside ourselves with extreme grief. Much of it we will probably never tell, as there are simply no words.

My pregnancy with my little girl was a tough one. Not just because I had two other small people who needed my attention, but the morning sickness. Oh, my, gawd, the morning sickness was unreal. All day, every day. I joked; she better be an angel when she comes out. Little did I know I would devastatingly get what I wished for. I was counting down to the 12-week mark in the hope it would surpass. It didn’t. 16 weeks and still feeling like I wished someone would put me to sleep and wake me up when it was done. Oh, how I would do anything for that morning sickness in lieu of what followed.

Due to several blunders by the hospital, I was late in getting a routine scan. When I finally got into the room she came up on the monitor dancing around my womb. I remember feeling overwhelmed with love. I had not seen her since she was a little peanut with a tiny heartbeat. Now she was a little baby pirouetting happily around. I could not wait to meet her, I thought to myself. So excited. What followed was around 7 days of total and utter hell. A fast-moving cyclone of big emotions and terror.

The sonographer indicated her heart on one side looked a little small, but he would have someone else look at it. Everything else was perfect with our beautiful little girl. Of course, the specialist was not immediately available, we would have to wait 24 hours to see her. Immediate fear overcame me. Google results delivered the worst. The next day we met with the foetal heart specialist. She confirmed what Google had told us. Our beautiful, perfect, little girl had Hyperplastic Left Heart Syndrome. The diagnosis was not good.

Hearing our specialist say those words sent shock waves through every crevice of my body. The unthinkable has happened to us. We were moved to a room to unload our horror. The next few days were a whirlwind of specialists and second and third and fourth opinions. All with the same outcome – HLHS, the diagnosis is not good. The emotions at this point were mainly indescribable and drove me out of my mind at times.

If there were any positives in this experience, it was that my husband and I from the get-go were aligned in our processing of the information and subsequent decisions that had to be made from it. This however does not take away from the fact that no parent should have to ever have to decide like this. Ever. Never. Ever.

Based first and foremost on the quality of life we would be bringing her into, if life were an option, my husband and I made the gut-wrenching decision to terminate late, our pregnancy. I can not tell you what this is like for a parent. There is no way to describe this. It will never leave me. Writing these words alone causes a deep ache in my heart and tears to roll down my cheeks. It is hard. Really hard.

In the following days we were scheduled to meet with a counsellor (ethics reasons of course) before beginning the process. One of the hardest periods of my life so far. A tiny pill is handed to you to stop the pregnancy hormones. I felt like I was going to be sick, my body trembling. How do I actually lift my hand to my mouth and swallow? How the hell can I do this? There is no one else that can take the hit for you. Horrifyingly traumatic.

In the day that followed I knew she had spread her wings and her soul had left my belly. She was flying high and no longer dancing peacefully inside of me. The next day I would need to deliver her tiny body.

I have decided to write this blog in two parts. It is overwhelmingly emotional for me and very hard to do. But I am committed to the conversation and sharing my story. Part two will follow soon.

Our Summer Clearance Sale (2021) will help raise funds for foetal heart research. On behalf of myself, my husband and Caroline (Co-Founder of Arlix + Hufie) we thank you from the bottom of our hearts for your purchase and contribution to such a worthy cause. My husband and I will be matching the donation for funds raised.

Kristy x

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