As we approach the month of Pregnancy and Infant Loss worldwide it is important to realise why this month exists, and WHY parents who walk this path choose to share their precious journeys and understand why the country is beginning to turn pink and blue! I hope this post hits home on WHY!
It is not about having a month for those to mourn, as believe me every day a baby or child loss parent grieves, some silently, and some openly. This month helps create awareness around a subject that is still taboo in so many countries around the world. In fact, within the UK we still have people who struggle to believe WHY we would share our journeys so openly. It is important for us to say this is NOT a month for parents who have gone through this pain, it is about acknowledgement, acceptance, and educating others, which can also help parents break the silence around their grief. For many, this will be the first time they share, or take part in events around the country to honour their little one that have gone on before them. While others isolate themselves as so many triggers, memories arise and can be hard to deal with, especially when they have had no support, or when society feels there should be a timescale on grief. I simply cannot understand why our government will not hold a minute silence as we do for those who lost their lives during Covid. Having 1 minute LIVE on TV might hit home a little harder on the impact of pregnancy and infant loss. On awareness and how to gain support for those struggling.
In 2014, after deciding to share and set up a closed group, Angel Parents UK & Worldwide. We were hit by hundreds of parents around the world wanting to join. It became apparent very quickly how many also faced the heartache of losing a baby, during or after pregnancy. We started our campaign for the 15th of October to become a National Day of Remembrance for Pregnancy and Infant Loss within the UK, on the 28th of December 2014. This day was special for me personally, as it was the day my older brother had died of what was called back then “Cot Death” now known as sudden infant death syndrome (SIDS). Something my birth mother had struggled to deal with after many years, and as a child I knew this day each year caused her to switch off from the world. I can still hear her crying alone. I can still remember the look upon her face, she was broken. It was also the day I found his grave, 9 years ago. That evening, I sat on a kitchen floor with another bereaved parent and talked openly about the impact of not being able to share, talk openly. About those we loved not being able to face us, as though we carried a curse. When simply it was because as a nation, we struggle to share openly our feelings, we are raised to not air our problems, not to cause a scene, or to talk about things that will make others feel uncomfortable.
I knew then, even if it meant losing those around me, I would share. Not all my journey because it was and still is today very painful, and I am learning to live each day after losing twins in 2012. I wanted to share how different it would be if we could all come together once a year to honour their precious lives. To have a national minute of silence. as a nation. It was about “breaking the silence” and educating others. Which included my close family and friends. It is about educating and creating awareness on a subject that 1:4 will experience within the UK during or after pregnancy. It was about educating in schools, workplaces, allowing others to talk about their grief openly, without the fear of being shunned. One special day we can remember as a nation.
Baby Loss Awareness week is NOT about the parents, we experience this pain, heartache every day of the year, regardless of if we have shared or not. For many of us those few seconds we wake each morning we pray that it was a bad dream. We question WHY this happened to us, but as time goes by, some of us do find the strength to share with others. I often read we do not need a day to remember, but we certainly DO need a day to educate others, because ignorance and lack of empathy still exists. The week, each year in the UK #BLAW2023 (Baby Loss Awareness week (9th October – 15th October) absolutely destroys me to be honest. Because as we showcase the amazing work of organisations and charities within the baby loss community, it can also bring so much guilt for many as they feel pressured to be doing something to acknowledge their grief.
When in fact, one special day allows them to come together and honour their little ones openly or privately. That day (15th October) having one minute silence I believe would bring a greater awareness, and allows those struggling to know they are not alone, and may encourage others to take part. As it stands today, we do not have a recognised day by the UK Government, so again we will brush under the table the fact babies do die. We will praise those who fundraise for cuddle cots, it baffles me. If we can have a crib for every baby born breathing, why when 1:4 babies will die to hospitals not have compulsory cold cots? We rely on grief for others to reach into their pockets and do a job our government should be doing AGAIN!
On the 15th of October, millions will light a candle, and join a worldwide event called the ‘Wave of Light’ which brings people around the world on social media together to remember and support each other. It has really annoyed me this year, as many are forgetting the purpose of the Wave of Light - It was created to bring us all together at one time, on one day. A special day of remembrance for parents! For everyone to participate at the same time to create a light that will showcase the love for each baby. But, I have seen so many posts that are holding the 'Wave of Light' on another day. This is not why it was created, this is not joining forces. It is simply a remembrance event, which do not get me wrong is beautiful. But, again we are not bringing communities together to understand the importance of this date. Even today, the support is still not available to so many, and only this year after an independent Pregnancy & Baby Loss review by Zoe Clarke-Coates and others that our babies under 24 weeks will be acknowledged with a certificate of life. Hopefully, we will start to see parents being able to share how much this means to them and their families. We say families because during the last 9 years we have come across so many children that struggle with the death of a sibling, and not having the care, or platform to share how they feel, and how they have been affected. Not forgetting that those who do provide support are stretched to their limits.
So, let me tell you contrary to belief this day is not recognised within the UK. Which, to me means our government are not accepting the fact so many babies die, and we have the statistics of a third world country. The fact is more needs to be done, and many in the healthcare sector need compulsory training on with regards to early baby loss. Only last year I spoke with a parent who had delivered her 15-week gestation baby boy, and was told “What do you want us to do with it”. The emotional scars she felt will never leave her, and this came from a teaching hospital, North Manchester General Hospital. She left the hospital and went to another hospital in Wythenshawe holding her precious baby boy. Which is just unthinkable and unacceptable today in society . But finally, she received the help, and was supported by someone who cared, exactly what she needed. I can only hope over time she can come to terms with the grief and pain she still feels today. I often hear from our elderly volunteer’s how they could never talk about their losses, that many never knew why their babies died, and the heartbreaking journeys of those that had their babies taken away without being able to hold, wash or say goodbye. So, this month we want you to know that whatever you choose to do during baby loss awareness week in the UK, please make sure that is right for you. If you need to come away from social media, unfollow us on social media please do! There is no rule book on the loss of a baby or child, because each journey is unique just like your babies and children’s ‘DNA’.
As a team we want you to know that we will honour your baby or child with you. We will light a special candle; we will say their names openly. We will share our journeys, for others to understand, and we will share your views. They will never be forgotten, we will continue to campaign for this day, to be recognised, to educate those who do not walk this path. e last 3 years we have worked with the Royal Oldham hospital EPAU, and I cannot believe the care compassion, willingness to learn from parents on what they want or need. Who embrace the pain with us, and offer parents what we call dressed with dignity. We are not a 3rd world country!! There is no excuse for having health professionals not understanding how to care for a parent who loses under a baby under 24 weeks. I do not mean every professional, but including this in training at University level may help change minds before they go out into the field. Also refreshment courses for those who work within the field now, should really been compulsory now in the 21st century.
We will be sharing tips like other organisations on how to take care of yourself, we will be running workshops and groups away from social media to support you, and signpost you to help that is available in your area. No losses are the same, and we appreciate that and agree wholeheartedly that you need to do what is best for you! But together we can come together and honour each life, educate and attend events, but as bereaved parents we need to protect ourselves by doing what our heart and mind says we can cope with. Whatever you choose, please know there is so much support out there now and that you are not ALONE. Together we can break the silence, but we do not want to do it at the expense of our mental health.
It is NOT about raising funds either, it is about educating, learning to openly talk about feelings for us, and acknowledge they had a beating heart, are loved and were very much wanted, and will continue to be, as long as we breathe air in this world. Reach out today, if you need support, you can find organisations on our website, and we will continue to share organisations, charities, that can support you. If you take one thing away from this today, please let it be that you know, you are not alone, and it is OK not be OK, it is just NOT okay to do this alone! One thing I will say, again is why will this government not acknowledge their precious lives with a day of remembrance, why cannot we not have a minute silence to remember. We did it for Covid, and for those who could not grieve openly. So, why not do it for the precious babies that die, it simply can only be they do not want to be held responsible, spend money on resources and support, when in fact in many cases it cannot be prevented. We all know Mother Nature can be cruel, but as human beings we are not meant or raised to accept our little ones die within the UK, we are not prepared to bury, cremate or say goodbye to our babies and children. It is and always will be the most excruciating pain a parent will ever go through in their entire life.
Please REMEMBER you are important, and so are your feelings regardless of when you experienced the loss of your baby or child. It matters, and so do they! Our team are available on chat 7 days a week, please reach out if you need us!
Petition Link: For the UK Government to honour the 15th October as a National Day of Remembrance for Pregnancy & Infant Loss.