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.

Watch our interview with Hazelanne on YouTube

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 30^th 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 1^st 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.

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.



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