VOTING IS NOW CLOSED
When my darling daughter, Holly Dao, was born sleeping at 25 weeks all I wanted to do was show her to the world. Even though she wasn’t alive, I was still so proud and in awe of her. However, I wasn’t sure if I was ‘allowed’ to and I didn’t know if she would be accepted. I felt this great taboo around talking about Holly, let alone sharing a picture.
Two weeks after her birth and death, the need to share her couldn’t be ignored anymore and so I set up my blog www.hollyslegacy.com. Initially I just wanted to announce her as my daughter but I quickly realised that there was a bigger need for me to blog. I needed to write to share Holly’s story, I needed to increase awareness for baby loss and termination and I needed to help others in similar situations.
Holly had developed a very rare condition in pregnancy. Affecting approximately 1 in 20,000 babies, we discovered at our 20 week scan that she had ‘complete heart block.’ Her heart block was as a result of me carrying rare antibodies which were continuously attacking her heart and ultimately, slowly killing her. I had no idea that I carried these antibodies and I had never heard of complete heart block. What I found the most frustrating was that during the 5 weeks we battled on with Holly’s pregnancy, I found very little information on the condition. Our consultant had only seen this once in her career and so it made understanding the condition incredibly hard. I ended up searching on Google but still found out very little. All my husband and I desperately wanted was to talk to someone else who had been in this situation.
Once I had started blogging it made me realise how important it was to share Holly’s condition. I wanted more than anything to give someone what we couldn’t have, someone who understood the diagnosis and the pain we were going through.
At 25 weeks gestation, we made the heartbreaking decision to interrupt our pregnancy with a termination. Our sweet girl was getting worse and struggling more as time went on. As parents, we couldn’t carry on with her slowly dying and we didn’t know if she could feel pain. All we wanted was for our little girl to be okay but she was sadly already losing a fighting battle. Four consultants agreed that it was the ‘right thing to do’ and couldn’t see her surviving pregnancy. Holly would have needed a heart transplant but would never be a candidate due to the amount of trauma already caused. So whilst all she knew was the comfort of my womb and the sound of my heartbeat, she peacefully passed away.
Once we had made that heartbreaking decision, I found myself searching and searching for stories on terminations for medical reasons. Being a midwife, I knew a little and had looked after parents who had made this horrible decision but nothing can prepare you for going on this journey yourself. I felt incredibly lonely and terrified of what people would think, so we didn’t tell many people the reality of our situation and just proceeded in a journey of darkness.
It was a few months after Holly’s death that some truly amazing friends gave me the courage to speak about what had happened. It was incredibly hard but I wrote a blog called ‘The Unedited Version’ and spoke about our termination. It was terrifying, I didn’t know if discussing this ‘taboo within a taboo’ would be accepted but I was overwhelmed to be met with so much love and support.
After that, nothing was off limits for me. If I could share Holly’s story and help just one person then it gave Holly’s life so much more meaning. It became my outlet for my grief just as much as it became my passion to help others.
I openly discuss my grief in my blogs. Prior to losing Holly, I hadn’t experienced grief and it came as shock. No one explains what grief is like, what is normal or how to try and cope. You don’t understand grief until it has knocked on your door and you are fully held within its grasp. I wanted and needed to change this. I want people to understand what grieving parents go through. I need them to understand that we ‘can’t just move on’ and that for some of us, we will always talk about our babies. Grief is a normal process when we have lost something so precious and I want it to be talked about. Grief is so individual and a process that becomes part of our ‘new normal’ that I felt it so important to document my journey through this. If a better understanding of grief can lead to someone being more sensitive to those who have lost a baby or even for grieving parents to know that they aren’t alone, then sharing my story will always be worth it.
Asides from a three-part blog series that I have recently wrote, I have never planned what to blog about. I wanted my blog to be a diary of my life without Holly and just show how different feelings come to be at different times. Grief does not follow a linear line and I felt strongly that I needed this reflected in my posts.
As such, I have written posts that have truly had some impact on my life, in aim to try and help others. I experienced judgment that I was ‘still grieving’ and so blogged about ‘The Right To Not Be Judged.’ I experienced great support whilst my husband received little and so I blogged that ‘Daddy Matters Too.’ I’ve blogged about the ‘Loss of Identity’ that some of us may feel and the inner turmoil of ‘Am I Still A Parent?’ There is so much more to losing a baby and experiencing grief that I think is widely misunderstood and so I needed to try and help people understand this.
Recently I wrote a series of blogs on preparing to meet your baby, making memories and saying goodbye. When we were facing the prospect of losing Holly, I had searched online for other parent’s stories because I desperately didn’t want to miss any opportunity. What I did find online was invaluable. For example, I have the most wonderful photographs of Holly’s funeral and that was all thanks to having read that a mother had photographs taken at her baby’s service. Knowing how much it helped me, meant that I needed to share my experience to see if it could give other parents ideas or even to help those watching someone go through baby loss.
It truly is bittersweet that it is only through losing Holly that I have discovered my passion in life. I have a burning passion to help others going through one of the most heartbreaking losses and to also support student midwives and other healthcare professionals in their bereavement care. My recent blogs have been aimed towards the healthcare professionals as I feel my experience as a midwife and a bereaved mother can bring some insight into what can help in such a devastating time.
Back in February, I blogged about speaking at The Bradford University ‘Understanding Baby Loss’ conference which was both the hardest and most inspiring event I have ever been too. I had very little bereavement experience as a student and so qualified feeling very unprepared. I always tried my best to give the care I felt most appropriate but now had a greater understanding of how staff could help during this difficult time. I therefore hope that by sharing my blogs in midwife forums, I can make a difference to that person’s confidence and therefore improve the care being given to the parents and their babies.
In the future, I hope to publish my blogs into a book. I remember going into a bookshop not long after Holly’s death and looking at the parenting aisle. There were hundreds of books but not one single written piece on parenting, when your baby has died. I am not sure what I was expecting to find when I entered that bookshop but it just cemented the need for baby loss to be talked about and for Holly’s story to be shared. Whilst I am so aware that each loss, baby and grief is as individual as a fingerprint, the innate need to parent doesn’t die too. I am determined to increase this awareness, share Holly’s story and reach as wide an audience as possible.
It is not always easy to write about Holly. On one hand it keeps her alive for me and yet on the other hand it breaks my heart. Words can be so incredibly powerful and I have realised the power in social media, in being able to share Holly so widely. I write for Holly and I share for others. I will miss Holly for eternity and I can only hope that my words will reach someone and give them a little more reassurance, whether that be a grieving parent, a friend or family or a bereavement worker. Holly’s memory will always be protected and her legacy of helping others will forever live on.
What Others Have Said
Her candid, honest and beautifully written blog has reached people far beyond her circle of friends. As her sister sharing her blog I have been amazed at the people that have contacted me to give thanks for Kirsty’s words. Her words have touched people that have been through similar experiences, her words have given them the confidence to share their feelings when previously they felt unable to. I have had people message and comment to me that after reading her blogs that they now feel that they are slightly better equipped to help loved ones experiencing loss and to understand that avoiding the subject of a lost baby is not the easiest and best path to take. For every grieving parent there is a circle of friends and family desperate to do and say the right thing and terrified of the wrong. Blogs like Kirsty’s help give others the confidence to try to the right thing. Personally for me, reading her words, gave me the courage to reach out to a friend on the anniversary of her baby’s passing and just say I’m thinking of you.