VOTING IS NOW CLOSED
I am beyond overwhelmed and incredibly humbled to have been shortlisted for the ‘Inspirational Mother’ award. I would like to start off by explaining my story and how my daughter, Holly has changed my world.
In April 2016, my husband and I discovered that we were expecting our second child. Having previously had a low risk pregnancy with our eldest daughter, we didn’t expect anything would go wrong. Fast forward to our 20 week anomaly scan where we discovered that our unborn daughter had an enlarged heart, fluid surrounding her heart and a slow heart rate. The five weeks that followed consisted of many scans in a specialist London hospital, the Evelina Children’s Hospital. Our baby’s final diagnosis was that of a rare condition called ‘complete heart block.’
It was discovered that I carry rare antibodies that were continuously attacking our daughter’s heart, preventing it from beating at a normal rate and slowly destroying the heart structure. Our daughter was getting weaker and more poorly as time went on. Had she survived pregnancy, a heart transplant would have been required but at this stage, she already wouldn’t have been an applicant due to amount of trauma caused. Our little girl was dying and there was nothing we could do to save her.
Being a midwife, I had some experience of caring for parents who had made the heart wrenching decision to terminate their pregnancy and yet I never expected it to happen to me. When we were faced with making the decision ourselves, it was heartbreaking. At 25 weeks gestation we made the decision to end the pregnancy, before our daughter experienced pain and whilst all she knew was the sound of my heartbeat and the warmth of my love. My heart broke as my daughter, Holly Dao Nguyen was born on the 7th September 2016.
What struck me after having my daughter was that the need to parent didn’t die with her. The innate feeling to protect her and honour her memory was just as strong as had she been alive. So my journey began of dedicating my life to helping others in similar situations.
Shortly after Holly’s death I began fundraising for the Evelina Children’s Hospital as they had provided us with so much support during the diagnosis. Had Holly been born, she would have been cared for by them and any future pregnancies would also be under their care. On the 12th October, the date of Holly’s funeral, I had managed to raise just over £1200. We decided the money would be split between two causes. The first, being specific antenatal days for parents who have received a cardiac diagnosis. The other half would go towards supporting the Evelina’s ‘United in Grief Support.’ A programme which supports families through grief by having community days for the families to meet others with a similar heartbreak, bereavement workshops and creating a long lasting reflection area for the families when they would come to visit. It was my way of trying to ‘give something back’ to such a brilliant and well needed charity.
Two weeks after Holly was born, my blog ‘Holly’s Legacy’ was born. I felt a desperate need to share my daughter and help others who may be facing a similar situation. I had discovered in the run up to Holly’s death that there was such a silence surrounding baby loss and in particular, termination of pregnancy. I was desperate myself to find out as much as I could about Holly’s condition, the process of termination and induction but yet couldn’t find much out there. So I made it my mission, in Holly’s memory to help break this silence and to allow others to feel supported and know that they aren’t alone.
Since starting my blog I have written about all aspects of Holly’s condition and my grief, as I feel it is so important for an increased knowledge and awareness of baby loss. Losing a baby will never be normal but I really want people who watch parents going through grief and loss to have some understanding of why we do what we do and therefore try reduce any stigmatisation. I have included blogs on termination, honouring our babies, the right to not be judged for the way we grieve, the loss of identity we feel and the importance of acknowledging grieving dads, to name a few. I have recently completed a three part blog series which documents the decisions that myself and my partner made in preparing for our loss, making memories with Holly and the decisions surrounding her funeral. I am trying to show parents that there are still so many opportunities in how you decide to care for your baby and give others an idea of what can be done to help people in their grief.
I plan to continue to blog about Holly and how I try to adapt to my ‘new normal’ as I have realised that grief doesn’t really ever end. It may change over time but as it changes I still want to support others in their journey. My final aim with my blogs is to reach a wider audience by publishing my blogs into a book. Everywhere around us we see parenting books but yet not so much on parenting a baby who isn’t here and I strongly feel that needs to change. The feedback that I have received thus far from friends, family and strangers continues to inspire me to share, as I strongly feel that if my blogs can help just one person then it gives Holly’s short life, so much more meaning.
In the run up to Christmas last year, I was struggling with the prospect of facing it without Holly. Not only would it be our first Christmas grieving but also her due date of the 21st December was fast approaching. I felt an innate need to be able to still parent Holly and so set about thinking of a way to honour her and other ‘angel’ babies at Christmas time. Having become part of a ‘baby loss community’ on my instagram account (@kirstyjemnugyen) I decided to ask other parents if they would like their babies included in a project I called ‘The Tree of Remembrance Project’. My aim was to have the permission to place a Christmas ornament for every baby, on a publically seen Christmas tree to increase the awareness for baby loss and allow us as parents to feel like our babies have been remembered this Christmas. I contacted hospitals, television channels, the BBC and ITV and my local town centre but was disappointed to be met with a no. Not to be disheartened, I decided to go down to our local country park and found a perfect tree which was well situated on a public walking path.
I decided to make snowflakes for each baby, made out of wooden pegs glued together which were painted white and scattered with glitter. I then put a tag on each snowflake with the baby’s name and date of birth. I made 33 in total which represented babies from all over the world and babies born from all different times, some being 30 years ago.
My husband and I went down to the country park, early in December and hung all 33 snowflakes. As we were doing so we had many people come by, stop and ask what we were doing. I was only too proud to explain and we received some beautiful feedback with some parents explaining that they understood the need for us to do this. In the process I managed to raise another £300 for the Evelina Hospital.
Shortly after, I was contacted by the Surrey advertiser newspaper who wanted to print the story of ‘The Tree of Remembrance Project.’ We had a caption on the front page and almost a full page interview in the paper. I had never felt so proud of my little girl and knowing that others deemed this tree important too, just meant the world to me and the parents of the babies included.
A week after my story has been published; BBC Surrey Radio contacted me for a twitter video interview and a radio interview. I was more than happy to continue to share Holly’s story and explain why talking about baby loss is so important. On what would have been Holly’s due date, we headed down to the tree and I was able to explain why saying our baby’s names are so necessary. The radio interview ran a few times over on the rush hour radio the next day and I was just so overwhelmed with the positive feedback.
Only a few months back, I was visiting the tree and discovered that other parents had added their own memorials, which was both heartbreaking and heart warming. New tags had been added and little handmade crocheted toys hung on the branches. I felt incredibly honoured that not only was the memorial being ‘accepted’ but also that other families were using this tree for comfort too. Soon after, ‘The Surrey Advertiser Newspaper’ contacted me for a further interview in which I was able to express my gratitude for the kindness of others. I share pictures of the tree frequently on Instagram, to show the parents how well loved their babies snowflakes are.
In early January 2017 I was contacted by the wonderful charity, Our Angels to see if I would be interested in speaking at their ‘Understanding Baby Loss’ conference for student midwives at Bradford University. Being a grieving mother and a midwife, it was thought that I could bring a unique perspective to the day. I had never done public speaking and with it being only 4 months since Holly’s death, it took some real consideration. The thought of sharing Holly’s story with over 400 attendees terrified me as I felt writing and talking about Holly were two very different things and wasn’t sure that I could ‘physically’ do it. However, I knew I couldn’t miss this opportunity to help others, to share what I knew as a midwife and what I know knew to be the care needed in bereavement. The opportunity to help student midwives provide better care for these parents was too important to say no to. I saw it as another way to parent Holly and to make her proud. I felt like nothing could be as scary as having to deliver Holly so I knew I could find the strength to do this.
I have been a midwife for five years at St Peters Hospital, Chertsey and had some experience looking after bereaved parents and their babies. However, I had very little experience in bereavement care as a student and so very much had to ‘learn on as I went.’ I tried my hardest to give what bereavement care I felt was ‘right’ but in hindsight, lacked confidence due to lack of experience and let my own expectations of grief cloud my judgment. Since experiencing baby loss myself, it has changed everything and given me the insight into what support is important and how much needs to change within bereavement care.
So in early February I provided a 20 minute presentation on baby loss as a mother and as a midwife. It was without a doubt the hardest thing that I have ever had to do, despite losing Holly. It was incredibly hard to not only share Holly’s story with people who didn’t know her but also reflect back on my own midwifery career. It was difficult and raw to talk about Holly, but I would do it again in a heartbeat. I wanted these student midwives to go away feeling more prepared and have a better understanding of what it is like to lose a baby and fortunately the Twitter and Facebook feedback showed this was achieved. I didn’t do it for me, it was always for Holly and for future bereaved parents and babies but I can honestly that until that point, I never knew how it felt to be truly proud. The gift the conference has given me is immeasurable. It has sparked an absolute desire in me to change bereavement care and to continue to support student and qualified midwives.
In early August of this year, I became an administrator on a new Facebook group ‘Alliance of Baby Loss Charities’ support group for maternity professionals’. Alongside four other admins of who are also bereaved parents, we aim to provide support to maternity professionals and students with regards to bereavement care. We currently have 220 members with more requesting to be added daily. In a safe environment, we provide support for any fears, questions and other issues relating to bereavement. I hope that the group continues to grow so that we can continue to reach others to improve bereavement care and help improve worker confidence.
I am now coming up to the 1st anniversary of Holly’s death. Again that need to parent and honour her is just as strong as ever. I have decided to put together memory bags full of comfort items, from charities of whom I am now acquainted with. By donating to these charities in Holly’s name and putting together these care packages, I hope to bring comfort to parents after they have lost their babies. I plan to take these memory bags to the hospital that Holly was born in, on the date of her anniversary. On what will be undoubtedly a very difficult day, I hope to remember Holly in love by sharing comfort in her dedication.
I will always, always wish that Holly was here over anything. But she isn’t and so the way I chose to honour her will always be to help others. This is my life, my ‘new normal’ and I am wholly dedicated to Holly and bereavement support. I will always keep talking and sharing our experience. I will show everyone, including my eldest daughter Eleni, that baby loss is nothing to be ashamed of. I will continue to actively participate in bereavement training for staff and students, whilst providing acts of comfort to bereaved parents. I feel that we can always choose to do things in two ways, in love and in anger. I will always want Holly but the love she has shown me will always win over. I am so proud of my daughter and although I have been nominated for Inspirational Mother, she is the true inspiration in all of this.
What Others Have Said
“I was delighted and incredibly humbled when Kirsty agreed to attend our charity’s midwifery conference in Feb 2017 to talk about both her perspectives to 400 midwives and student midwives. Her input – just five months after Holly passed away – showed incredible strength and courage, and was without question one of the most useful, emotional, and powerful sessions of the entire day. Her ability to share her story and still provide learning points for so many midwives was breathtaking and inspirational.”