It must be so hard from people to imagine a time when there was no help for the mothers of stillborn babies: no realisation of the scale of the loss, no advice for fathers, no real sympathy for family members, no understanding of the effect grief can have for years. After all, how can such issues be addressed if they are never acknowledged, let alone spoken about?
That is how it was at the end of 1975, when my second son was stillborn at full term. Looking back I can remember a terrible silence – and the evasive looks of medical staff who seemingly could not bear to admit that this ‘thing’ had happened: an over-turning of the natural order of events.
As a journalist I was able to pour my grief into words – and tell the readers of the Guardian how it felt to bear a stillborn child. The rest is history.
Hazelanne Lewis got in touch and soon the Stillbirth Society was formed – and now we can all look back and give thanks that society is so much more enlightened.
In 1975 I gave birth to a baby boy who was stillborn. At the time, partners were not encouraged to be with you during labour. Maternity units acted on an ‘out of sight, out of mind' basis, with the stillborn baby being whisked away and out of the room before the mother could see him.
Partners were told to register the birth and grant permission to the hospital to bury the baby. There was no room on the death certificate for the baby’s first name. They were advised not to talk to the mother about the baby as that would upset her. Never mind the fact that fathers also had feelings. There was no support or guidance for professionals too.
It’s difficult to mourn your baby with no tangible memories, and people cross the road to avoid talking to you and there is no acknowledgement of the need to mourn. The thought of the next baby was offered as a sticking plaster to cure the pain of the loss.
I reached out through the press (no social media then) to try and gain support for educating professionals on the needs of bereaved parents. The response from bereaved parents was overwhelming and indicated a clear need for support. From that I went on to found Sands.
I am stunned by how Sands has grown into the effective, influential organisation it is today. I had hopes 40 years ago that it would be a viable organisation, but never dreamt it would be as powerful as it is.
Rob Allen, founder of the very first Sands United FC team in Northampton, grew from grief after Charlotte and Rob Allen’s baby daughter, Niamh, died on 9 October 2017 at 39 weeks and 3 days. To honour their daughter’s memory and ensure her legacy lives forever on, Rob’s love of football led him to organise a football match at Northampton Town FC in aid of Sands in May 2018.
Since then Sands United has grown to more than 30 teams across the UK.
The role of Patron will be vital in raising the profile of Sands United, to champion this unique way of offering bereavement support, and help more bereaved families come together through a shared love of sport and a network where they can feel at ease talking about their grief when they're ready.
Rob says: “I’m honoured to take on the role of Patron of Sands United and I’m excited to have this opportunity to work closely with Sands to make sure more people know about this unique way of offering bereavement support for anyone affected by the death of a baby in pregnancy, at birth, or during infancy.
“Sands United means so much to me personally. The very first football team helped me find a way through grief after the death of our baby girl Niamh in 2017 and I know it was a lifeline for all the players who joined that team and those that have formed across the UK since then.
“It’s a cliché but it’s true that many men who’ve been through pregnancy and baby loss simply don’t want to talk about it. At Sands United there is no pressure to talk if you don’t want to – simply being around other people who’ve had a similar experience can be an enormous help. If someone wants to share how they’re feeling it’s a totally supportive safe space to do that, but if people simply want to play together that’s ok too and sport can make a big difference to your mental wellbeing.
“My dream for Sands United is that it becomes a lasting legacy for Niamh and all the babies whose lives ended far too soon. In the future I hope that anyone who needs bereavement support can find a Sands United team wherever they live in the UK, and that this grows beyond football so that anyone who has been affected by the death of a baby can come together through a shared love of sport.”
Donna Ockenden FRSA is a nurse, a midwife and community activist. She has more than 30 years’ experience within a variety of health settings both in the UK and internationally. In 2017 Donna was appointed by the then Secretary of State for Health and Social Care, the Rt Hon Jeremy Hunt MP, to chair the Independent review into Maternity Services at the Shrewsbury and Telford Hospitals NHS Trust, the final report of which was published on March 30th 2022.
Donna has been a champion of patient safety in women’s and children’s health and maternity services from the very beginning of her career. Patient safety and family voices are at the heart of everything she does. Donna has been committed to compassion and excellence in bereavement care since the very first days of her career as a student midwife in Portsmouth.
Donna and her team work alongside a number of charities who are committed to ensuring the best and safest outcomes for mothers and their babies and that they receive safe care during the whole of their maternity journey and postnatal period. She is a proud to be an Ambassador for SANDS, Patron for MAMA Academy, and an honorary president of Baby Lifeline, the mother and baby charity funded 39 years ago by Judy Ledger following the personal tragedy of losing three premature babies.
In May 2022, Donna was appointed as the Chair of the Independent review into Maternity Services at the Nottingham University Hospitals NHS Trust by the then Secretary of State for Health and Social Care, the Rt Hon Sajid Javid MP. The review officially started on the 1st September 2022.
Throughout every aspect of her life, Donna believes in “be the best you can…” and does all she can to ensure this happens on daily basis.
Genelle Aldred is an Author, Broadcaster and Consultant for all things communication. She has enjoyed a successful career as a journalist and newsreader moving to commentary and punditry in recent years. Since 2007 Genelle has worked for organisations including ITN, ITV, the BBC, ITN Productions, News UK and CBC.
She is currently Deputy Chair of Women in Journalism. Other prominent roles of Genelle’s include Head of Digital Strategy for an International NGO and a Channel Manager of a Freeview TV Channel.
Genelle runs training for organisations trying to get better at tough conversations and consulting on cutting-edge media, presentation and brand editorial narratives. Solving complex communication puzzles is her sweet spot as she is a passionate advocate for honest discussions around social cohesion, diversity and inclusion. Her book Communicate for Change: Creating Justice in a world of Bias was published in the autumn of 2021 with critical acclaim from best-selling authors Emma Gannon, Matt Haig and Dr Sophie Mort.
Genelle is an internationally sought-after public speaker and panellist as she smashes through glass ceilings as an empowering woman.
As an Ambassador of Sands, Genelle is passionate about raising awareness of women’s health and ending the stigma surrounding baby and infant loss.
Genelle is a very keen golfer and can be found on a golf course in all her spare time.
Matt Allwright first came to prominence in 1997 as an investigative journalist on the flagship BBC consumer affairs programme Watchdog. Since 2001 he's been the iconic presenter of the highly successful programme Rogue Traders, plus starring in Just the Two of Us.
Matt became involved with us as an Ambassador after the death of his best friends' twin boys, Finlay and Cameron.
Malin Andersson was born in Sweden to a Sri-Lankan mother and Swedish father. She moved to England after losing her father to skin cancer, and was involved in the pageant scene and worked in cabin crew for four years until appearing on Love Island in 2016 and becoming a successful social media influencer. Shortly after Love Island, Malin lost her mother to stomach cancer and then became pregnant with a baby girl. On 23rd December 2018, Malin’s daughter, Consy was born seven weeks early in December and was cared for by Great Ormond Street Hospital, but sadly died on 22nd January. Malin now positions herself as a mental health advocate and body positivity campaigner, who works hard to use her platform to raise awareness of mental health issues and provide guidance to her following. Her raw honesty and openness in discussing her personal battles has proven to capture the hearts of many. Malin constantly encourages her followers to take a positive outlook on life and is big on promoting self-love.
David Haig has had a varied acting career on stage and screen including roles the hit British film Four Weddings and A Funeral and the BBC television sitcom The Thin Blue Line. He won an Olivier Award in 1988 for his performance in Our Country's Good. More recently he has filmed My Boy Jack, his own screenplay about Rudyard Kipling and the death of his son, Jack.
David became involved with us after his daughter Grace was stillborn in 1996. He supports us as an Ambassador in many ways, including by writing a foreword for one of our books Fathers Feel too. David lives in London with his partner Julia and their 5 other children.
Influencer KSAVI, is a trained makeup artist and certified life coach.
She found comfort, motivation and gratitude in celebrating both inner and outer beauty following the devastating loss of her second son, Shivai. She used the coping mechanisms learned on her own personal journey through grief to find happiness, and to talk openly about overcoming adversity, to help others.
Her purpose centres around kindness and she set up growing online community 'Lipstick Power' to help women support other women through life, experiences, trauma and loss. She also launched her Virtual Makeup Session Fundraisers to help raise money for India's Covid Relief. Her uniqueness is in the open and frank way that she shares her vulnerability, remains real and balances a successful career, with being a mum.
Professor Gordon Smith
Professor Gordon Smith is head of the Department of Obstetrics and Gynaecology at the University of Cambridge and theme lead for Women’s Health at the NIHR Cambridge Biomedical Research Centre.
His internationally recognised research is looking for better ways to predict problems in pregnancy so babies and mothers get the care they need.
Professor Smith has supported Sands for more than a decade with expert research and clinical advice, and has helped us in successful campaigns to highlight the need to reduce baby deaths.
As an Ambassador, he has a special focus on promoting work to save babies’ lives and improve the range and impact of perinatal research.
Professor Smith’s collaboration with Sands includes The Pregnancy Outcome Prediction (POP) study that seeks to accurately identify which babies are at the highest risk of stillbirth or neonatal death and means that treatments can be better targeted, this also means that families whose pregnancies are healthy can be reassured they are also low risk.
Rakhee Thakrar is originally from Leicester. On a last minute gap year she decided to give the acting profession a try. In that year she auditioned for Silver Street the BBC radio soap and got the part of Roopal Chauhan. That gap year was in 2004, it stretched a little bit. Since then her credits include Page Eight, Holby City, Bollywood Carmen and most recently EastEnders. She's also born on a leap year.
Rakhee says: "I knew I wanted to be involved with Sands from my very first research meeting there with Erica Stewart, Sands Bereavement Support Services Manager. I play a character called Shabnam in EastEnders and Shabnam and her partner were to experience a stillbirth. I heard in great detail how complicated, devastating and utterly heartbreaking it is for your baby to die and in the months that followed I learned even more. During my research and endless phone conversations with Erica, I felt compelled to help in any way I could - it was an instinct. A natural progression from working together on the storyline for EastEnders. I was touched and honoured when I was asked and agreed without hesitation. I look forward to working with the fantastic team at Sands."