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.
Baby girl Kohana and her bunny
After 9 years of IVF and 7 full rounds we finally got more than 2 embryos. We now had 5 in total. We made the decision to transfer 2 embryos.
On day 4 after transfer I did a pregnancy test – IT WAS POSITIVE!
I had suffered an early loss at 7 weeks nine months earlier, so I was extremely anxious to see the baby on the first scan. At my 8 week scan we had a healthy heartbeat, but only 1 embryo had made it.
The following week something did not feel right, so my GP sent me for another scan. This is where we discovered we were having TWINS - identical ones from the 1 embryo that had split. We had 2 more scans up to 13 weeks and found out we were having girls.
At the 20 week scan we were told that twin B (smallest) was not growing and was having some blood flow issues.
At 21 weeks we were told to decide to risk both babies or have surgery to save one. We decided to buy more time and monitor them closely 3 times a week.
When twin B's flows reversed and she slowed her movements, they made the decision to get the babies out within the next day or so.
My experience of labour was terrifying. Three hours after the scan I was being wheeled into theatre alone, after being told not to expect the girls to be breathing at the time of their births.
They were born within a minute of each other and they were both breathing. After my husband cut their cords, they were rushed to the NICU and he went to be with them.
I went to recovery, then back to my room to await the news of how they were doing. I finally got to see my babies around 5pm that evening. They were so tiny! Twin A, Harlyn Amelia Eva, weighed 990g and Twin B, Kohana Mia Clare, weighed 600g. Harlyn was the larger and healthier twin but even so she was so sick she needed to be intubated and things were touch and go for many days.
After they were born, Kohana held my little fighter and was breathing on her own with some help of CPAP. After 2 days I got to have my first cuddle with her.
They both had such tiny bodies and similar features: their lips, fingers and toes were so cute! And when they opened their eyes, oh my god they were so blue and beautiful.
After two weeks I also got to hold Harlyn for a short time. At day 41, when they were both on CPAP again after some setbacks, I got to have my first “twin cuddle”. The first thing they did was hold each other’s hands. I cried so much that day.
On day 70 Harlyn was strong enough to move to the Special Care Nursery and continue growing while Kohana was intubated again due to her lungs. We were told she will need to go to QCH for further tests, and to see what could be done to help her. Finally she got a bed and we made the awful trip one hour up the road with her needing lights and sirens to get her there safely, as she stopped breathing en route. The transfer began 10 days of hell for us, watching her struggle and have to endure so much. It was so unfair.
Meanwhile our other baby, who was still very small and fragile, was in another hospital.
We then got the news that Kohana’s lungs were way worse than they had thought, and that she would not survive much longer. We returned to the GCUH were her sister was waiting and the fantastic NICU team were there to welcome her home once again. They then celebrated 111 days in hospital and their older brothers, their sister and my best friend and sister in law came to celebrate the milestone
with us by getting some family photos taken. As discussions were had, we cherished every moment. I am still kicking myself that I did not get a photo of just Kohana and myself.
We got to spend her last moments with us in the sun and the fresh air outside, amongst the butterflies. She passed so peacefully in my arms.
She finally looked at peace, with no more pain and no more tests. We spent the hour giving her cuddles. We gave her her first proper bath and dressed her without all the wires and tubes, before spending one last night with her. The following morning we said our goodbyes and handed her to the social worker who
walked her back through the NICU one last time.
It was very difficult to grieve one baby while still caring for our other baby - a baby who still had medical needs, like sugar issues, cardiac issues and an NG tube for feeding.
I got home 123 days after giving birth to my two baby girls.
I still feel like I missed so much from the baby shower to holding them after birth to being able to dress and feed them normally, and sometimes just being able to hold them at all was difficult. I had so much anger towards everyone else who got to experience a “normal” birth.
My life became being Harlyn and Kohana’s mum. I had 2 babies and I always will. Just one is not here physically in my arms. But she will always be in my heart.
I found the NICU journey challenging. The constant WHY? Why her? Why me? Why us? It is just not fair. After having to go through IVF in the first place, the thought of "how can this now happen?" kept coming back to me.
The one comment I get and have to walk away from still is “At least you still have one baby!” Yes, but they had their own personalities, looks, hearts and minds. They were a set; we will all be missing a part of ourselves for life. There is no easy way to deal with any of it.
What I would say to parents who are recently bereaved is to write down how you feel. Write letters to your child and seal them - I kept mine. Maybe one day I will
open and read them, but for now they are in a box. Find a support network of people who been through what you have been through. Via Social Media, or a local hospital network that can help. There are always ways you can remember and think of your baby in everyday life. We talk about Kohana a lot with Harlyn and with friends and family.
Our Possum Portrait shows Kohana as a raw and detailed vision with no pain and tubes and wires. It captures a moment in time when everything was good.
Having her lying on Little Nutbrown Hare makes it even more special, as this bunny represents her and our love for her. I can see her and how beautiful she is, and how strong she is and that she will be my little angel always.
My husband has 3 older children in their early to mid 20’s. Only one came to the hospital not long after the girls were born and it was very hard for him to see the girls and all the machines. The other two came when we reached the 111 day milestone and the oldest was still very uneasy with the situation. The "not wanting to get too close if it is not going to last" type of feeling.
The funeral was just us at home and Kohana's half siblings chose not to see her that day. That was fine with us. We do not talk to them about losing Kohana as much as we should. I have no idea how they feel about it. On the other hand they love and adore Harlyn.
What loss has made me realise is that life is not guaranteed. Treasure what you have and make the most of every moment. Take chances, do things differently, make it count. Do not forget to grow and live. You do not have to be perfect and happy all the time.
Harlyn now "plays with" Kohana. She describes her to us and tells us what she is like. So in a way she lives for both of them, and for us to treasure always.
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Possum Portrait to a mum like Linda
who is living with loss.
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