This is My Story - Hayley

In this series of personal stories we hear from parents who have suffered pregnancy or baby loss. We hold space for loss and grief, and we remember our babies gone too soon.

In sharing their stories, these parents are beginning to exorcise the triple demons of stigma, silence and ignorance that afflict so many conversations in the perinatal bereavement space.

Parents share their journeys and the lessons they have learned about grief, parenthood, friendship and living after the death of their baby. They tell us how they have changed, who they have become, and what truly matters now.

Marli and Ilah with their mummy

I found out I was pregnant at 5 weeks. I went for a routine scan at 7 weeks and to my absolute surprise, found out I was pregnant with twins.

As I was going to the Philippines for a family wedding a few weeks later, I had a scan 2 days before we left to find out that twin B had anencephaly. I went overseas and the morning I landed back in Australia a week later, now 11 weeks pregnant, I went straight to the Royal Women’s for scans and to work out how to approach and treat the pregnancy.

At the appointment I was told that the twins were identical, in separate sacks but sharing a placenta. I could terminate the whole pregnancy, or continue on with frequent monitoring to hopefully achieve the outcome of one healthy baby at the end. The plan was to get me to at least 32 weeks to give twin A the best chance at a healthy life.

As scared as I was with the whole prognosis, the thought of having one healthy baby at the end kept me going. Knowing that you are going to lose one the whole time was hard, but I needed her to stay strong for her sister.

The girls where doing amazing until around 30 weeks when there was a build up of fluid from twin B (Ilah) and I was admitted to hospital. They drained the fluid and kept me on 24 hour monitoring until I was 31+2 days, when the decision was made to deliver the girls. On the morning of the 2nd April 2014 I was sent off for a C-section.

I remember feeling excited, sad, nervous and extremely overwhelmed, as I knew today was the day I would have to say goodbye to my daughter - but on the other hand I would get to meet my other daughter, Marli.

Marli and Ilah where born at 11.08am and 11.09am. Marli was tiny but mighty. She was breathing unassisted and in full health. Her little sister Ilah was incredible. When I held Ilah for the first time, I felt a love so deep. She was my little superhero, doing everything she needed to do and I was so proud of her. She gave me the best gift in the world, this being her sister Marli.

Marli was the absolute best. My first cuddle with her the day after she was born was bliss. I remember feeling so grateful that she had survived and was doing so well. Marli Eva (Eva meaning life) was 1.376kg of absolute perfection. Ilah (Hayley, my name spelt backwards with a twist) Kathleen was 1.080kg and was the sweetest little soul I have ever met.

Ilah survived for 90 minutes. She got to meet her grandmothers, her grandfather and her aunts and uncles before passing away. It was an extremely heartbreaking yet beautiful moment in my life, and one I will cherish forever.

Marli was kicking goals and gaining weight each day. On day 6 they made the decision to transfer her to Geelong (closer to home for us), as she was doing everything she needed to be doing.

Devastatingly, on day 8 Marli took a turn. I remember waking up to a phone call from the hospital to say that Marli had had a rough few hours. I went in straight away and knew something was seriously wrong with her.

They performed tests and she continued to deteriorate. I felt helpless and like no one was listening to me. The decision was finally made to transfer her back to the Royal Women's late that night. When we arrived, they were doing everything they could. I was petrified.

The following day they took Marli for an MRI and explained to me that she had meningitis. The infection had spread so quickly and aggressively throughout her brain that she had no chance of surviving without machines.

My heart was shattered when I heard those words. I went into a complete state of shock. The staff at the Royal Women's where incredible through the worst time of my life. My mum, dad and sister where absolute pillars of strength for me when I had to make the toughest decision in the world to turn off Marli's life support. We were all together, my mum and dad, sister, brother, sister-in-law, Marli's father, his mum and aunty. We all said our own goodbyes and then her tubes were removed.

My little fighter held on for another 12 excruciating hours. This was extremely hard. She grew her wings on the 12th of April 2014. This was and still is the hardest day of my life.

Losing both my babies was the hardest thing I think I will ever go through. You are not meant to outlive your children. To lose two within 2 weeks absolutely destroyed me.

I lost a lot of friends during this time, as people didn’t know how to talk to me - what to say or how to act. I changed a lot in the weeks after I lost the girls. My priorities on life, work, relationships all changed. Family was always important to me, but now they became my everything. They got me through some really dark times. Without my mum and ad I honestly don’t think I would have made it through.

A few years ago I lost my beautiful mum at 59. This was tremendously hard, but knowing she is now with her granddaughters somehow made it bearable for me. Losing mum so young, and after losing Marli & Ilah, has put life even more into perspective for me. Life is short. It can be so cruel. But you have to make the most of it. Enjoy it and make sure you are doing things and are surrounded by people who make you happy and that you love - because it can be gone in the blink of an eye.

Life can be unfair, and in the absolute depths of grief when you feel like there is no light at the end of the tunnel, just breathe. It’s a long, never-ending road, but it does somehow become more bearable and you learn to live with your new normal.

Be kind to yourself, be gentle. I'm now 10 years on and there are still days that I don’t want to get out of bed - and that’s ok. I allow myself to feel it all. Talk about your babies, and if you are lucky enough to have living children, talk to them about their sibling/s. I love telling my two girls Ada & Neve who I had after losing Marli and Ilah all about their sisters. Its a way to keep their memories alive and it fills me with pride when they smile and listen.

My Possum Portrait is the most incredible picture. It has been in my head for over 10 years, and now I get to look at it every day. In real life I never got to hold both my girls together. But I longed for this. Looking at my portrait, this is the memory I always wanted, but didn’t get.

I have since had two more daughters, Ada Marlah and Neve Kate. We always talk about Marli & Ilah. Ada has a picture of them on her bedside table. We celebrate their birthday with balloons and cake every year. I think it is extremely important to talk about the girls, and they know enough about them for their ages. I will explain more as they get older.

Unfortunately, infant loss doesn’t discriminate. Never did it cross my mind that it would happen to me. I want my girls to know this as they grow up: it can happen to anyone. The support a grieving parent needs is endless.

Nothing can prepare you for losing your baby. My experience with loss made me realise to trust your instinct as a parent and not to be afraid to speak up. Marli could still be here today if I felt like I could have had a stronger voice when it came to her care.

My loss has also taught me to look after myself. Grief is a daily struggle, and it really is ok not to be ok. It is important to let people in and let them know how you are really feeling.

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