Baby Loss Awareness Week – four things you should know
Sadly, the death of a baby is not a rare tragedy and around 15 babies die before, during or soon after birth every day in the UK. This means that every 90 minutes a family is dealing with the utter tragedy and devastation of losing their baby.
How those that are lost are remembered
Throughout the week bereaved parents, with their families and friends, unite with each other and others across the world to commemorate the lives of babies who died during pregnancy, at or soon after birth and in infancy.
Baby Loss Awareness Week culminates with the global “Wave of Light” on 15 October, which is also recognised as International Pregnancy & Infant Loss Remembrance Day. We are all invited to light a candle at 7pm local time and be quiet to remember the young lives that have died. We can take a photo of our candles and post them on Facebook, Instagram or Twitter using #WaveofLight.
We are also encouraged to wear a Baby Loss Awareness Pin to raise awareness throughout the week. The pins are on sale through a number of charities involved in supporting Baby Loss Awareness Week including Group B Strep Support. All the money raised through the sale of pins will go to the charity we purchase it from.
I look forward to wearing my pin with pride, remembering these precious short lives and celebrating the courage of families who have broken the silence.
How the initiative hopes to drive change
Baby Loss Awareness Week highlights the need for real improvements in bereavement care, research and prevention of baby loss, and is an amazing collaboration between around 60 charities and organisations working together for change.
There have been tangible improvements in policy and substantial research into why babies die and what can be done to reduce the rate of stillbirth and neonatal death, though much more still needs to be done.
Bereavement care and support is also an area in which Baby Loss Awareness Week hopes to drive real beneficial change. The care that bereaved families receive from health and other professionals, following pregnancy loss or the death of their baby, can have long-lasting effects. Good care cannot remove parents’ pain and grief, but it can help them through this devastating time. In contrast, poor care can significantly add to their distress.
This year there is a particular focus on what could be done right now to better support families affected by the death of a baby. For example, it is a shocking reality that on many maternity wards there is a lack of dedicated bereavement rooms and so parents have nowhere private to spend precious time with their baby before they have to say goodbye. So providing this facility is a real focus.
This year, there is going to be a huge focus on the lack of timely access to psychological therapies for people who need extra mental health support following pregnancy or baby loss. Over the next 12 months the organisations involved will be campaigning to the Government to ensure that anyone who needs psychological therapy after pregnancy or baby loss, can access it on the NHS, without unduly long waiting times.
How to show support
People from around the UK are being asked to get involved and start conversations around baby loss, by wearing pin badges or Twibbons, asking if their local buildings and landmarks can be lit up in pink and blue and taking part in memorial walks, services and other Baby Loss Awareness Week events.
Which charities are involved?
There are around 60 amazing and invaluable charities, groups and organisations involved in Baby Loss Awareness Week on both a local and national level including Abbie’s fund, Abigail’s Footsteps, Aching Arms, Petals, 4Louis, Upon Butterfly Wings, Teddy’s Wish, Stillbirth Alliance, GBS Support and The Legacy of Leo to name but a few.
There are however a core group of Baby Loss Awareness Alliance Members.
Sands, the stillbirth and neonatal death charity, was founded in 1978 by a small group of bereaved parents devastated by the death of their babies and by the total lack of acknowledgement and understanding of the significance and impact of their loss. It exists to reduce the number of babies dying and to ensure that anyone affected by the death of a baby receives the best possible care and support for as long as they need it wherever they are in the UK.
Since 2010 Sands has played a major part in organising the week and since 2014 has taken a lead role in promoting the week as part of its work raising awareness of the issues surrounding pregnancy and baby loss in the UK.
Sands promotes and funds research into the cause of baby deaths and provides an amazing and widely accessible bereavement support service at local and national level. This is done through a Freephone helpline (0808 164 3332), mobile app (sands.org.uk/app), online community (sands.community) and resources (sands.org.uk/book) including family support packs, memory boxes and over 100 regional support groups run by trained befrienders.
Sands work in partnership with health care professionals and offer a range of training programmes and bereavement care resources to ensure that every bereaved parent and family receives the best possible care wherever they are. They offer online E-Learning courses.
Sands also work with governments and other organisations to drive change and raise awareness of the issues relating to baby loss.
Bliss is a national charity aimed at helping babies and families of babies that are born premature or sick. They want to ensure every baby born premature or sick in the UK the best chance of survival and quality of life. They support parents to be involved in their baby’s hospital care by providing them with information and emotional support, and training healthcare professionals. They campaign for changes in policy and practice and fund life-changing neonatal research.
They have recently been heavily campaigning in respect of a right for parents to have paid neonatal leave and strongly agree that parents should receive additional leave and pay if their baby is born needing neonatal care and that this should be a right from day one of the baby’s birth with no cap.
The Lullaby Trust
The Lullaby Trust raises awareness of sudden infant death syndrome (SIDS), provides expert advice on safer sleep for babies and offers emotional support for bereaved families. They work with the NHS, run a national service for bereaved parents and support families before and after the birth of their new baby. They offer a free information line for parents and professionals 0808 802 6869 and a dedicated line for bereaved families 0808 802 6868 or email: [email protected]
They have recently commented on how, despite recent statistics from the Office for National Statistics showing that rates of sudden infant death syndrome (SIDS) have shown a decrease in England and Wales, there needs to be a real warning against complacency and that there needs to be further action to bring down the rate.
The Miscarriage Association
The Miscarriage Association aim to help anyone who has been affected by miscarriage, molar pregnancy (where a foetus doesn't form properly in the womb and a lump of abnormal cells grows in the womb instead of a healthy foetus) or ectopic pregnancy.
Their website hosts a wealth of information for people suffering from miscarriage and their partners/ families. They offer a pregnancy loss helpline, live chat service and email support service as well as support groups and leaflets.
They also support ground-breaking funding into cause and prevention of miscarriage and highlight and explain current studies and trials people can become involved in.
Tommy's is the UK’s largest charity funding research into the causes of miscarriage, stillbirth and premature birth. They also provide information for parents-to-be to help them have a healthy pregnancy and baby and have an online help and advice service.
They highlight the fact that one in four women unacceptably lose a baby during pregnancy and birth, and are dedicated to changing the statistics #TogetherForChangeCampaign
They highlight the need of parents to obtain answers when their babies die and aim to answer these questions, and carry out substantial research into miscarriage, still birth and complications.
Child Bereavement UK
We have also previously highlighted the fantastic work carried out by the charity Child Bereavement UK - a member and supporter of Baby Loss Awareness Week.
Child Bereavement UK helps children and young people (up to age 25), parents, and families, to rebuild their lives when a child grieves or when a child dies. The charity also provides training to professionals in health and social care, education, and the voluntary and corporate sectors, equipping them to provide the best possible care to bereaved families.
Ann Chalmers is Chief Executive of this amazing charity and kindly shared some of her thoughts with us.
“Families we support at Child Bereavement UK tell us how devastating the death of a baby is, whatever the cause. The intensity of love parents feel for their baby is not measured by how long the baby lived, but in the emotional investment they have in their child. For parents expecting to welcome a new life, but instead facing the reality that their baby has died, it can be immensely difficult. Finding answers as to why this has happened can be very important - questions left unanswered can add to parents’ distress and to the complexity of their grief.
“The death of a longed-for baby can have a huge impact on parents and their wider family, and it can also have an impact on the professionals who support them. At Child Bereavement UK we know from our 26 years’ experience that the quality of support a family receives around the time of a death can make a big difference to their long-term wellbeing, and it is vitally important for professionals to be able to understand and meet the needs of grieving families. To date, we have trained more than 135,000 professionals including doctors, nurses and midwives, helping them to provide the best possible care to bereaved children and parents at what is undoubtedly one of the most difficult times in their lives.”
Child Bereavement UK recognise the huge impact that coronavirus is having on everyone, including individuals and families facing bereavement, professionals who work with families, and their supporters. They have created a page on their website that brings together guidance and information to help support families at this difficult time. The webpage includes videos and information dealing with issues such as holding a funeral or ceremony when you cannot meet, supporting children through difficult times and what to do when you can't visit someone who is ill.
Despite the pandemic their Helpline is operating as normal, Monday – Friday, 9am – 5pm (except Bank Holidays).
Helpline: 0800 02 888 40, Live Chat via the website, and email: [email protected]
Baby Loss Awareness Week is an important time to recognise and raise awareness of the issue of infant loss. We hope that this has helped you to understand the issues that are caused by baby loss, and perhaps encourages you to get involved with the week in future.