A Surrey mother has spoken of her heart-breaking story of child loss as part of a new campaign and exhibition which aims to offer more support to grieving parents and encourages people to talk more openly and honestly about grief and child loss.

Jodie Worsfold, 33, from Carshalton had baby Margot in 2020, who was diagnosed with Edwards’ Syndrome – a rare and life-limiting condition – and lived for seven weeks. Trisomy 13 and 18 are genetic disorders that affect each child differently. Sadly, survival rates are low and whilst some children do survive longer, many babies do not live beyond their first birthday.

The exhibition which has been created by Ceridwen Hughes and the organisation she founded, Same but Different, and is called ‘You’re not Alone’. It is being launched today during Baby Loss Awareness Week (October 9-15).

Jointly funded by The National Lottery Community Fund, the largest funder of community activity in the UK, and Illumina, a global leader in DNA sequencing, it calls for more open discussion and aims to offer more support to parents whose children have passed away through life-limiting genetic birth disorders known as Trisomy 13 or 18.

No diagnosis was given until after Margot’s birth and her first 4 weeks were spent in NICU, before finally being allowed home where she died peacefully under the care of the hospice.

Jodie said of her first visit to the NICU to see her baby: “At no point did anybody say ‘This is your lovely daughter. Do you want to hold her?’. We were just left there alone and in shock.

Hillingdon Times: Margot passed away at home on 4th September having been diagnosed with Edwards’ SyndromeMargot passed away at home on 4th September having been diagnosed with Edwards’ Syndrome

“Jamie and I couldn’t be at the incubator together because of Covid, which was really traumatic and distressing. That was her welcome into the world.”

Photographer Ceridwen Hughes, has created the project to raise awareness about the importance of talking about grief through baby loss, whilst celebrating the lives of the babies, no matter how short their lives.

In addition to striking imagery and impactful films, a dedicated piece of music has also been created as part of the project to represent the voices of the mothers by composer Michael Speed.

“Coming home, leaving without your baby is not normal,” added Jodie. “It was so hard to leave her. I remember going to sleep crying, with that deflated pregnancy tummy but she wasn’t in her bed next to me either.

“I’d looked at the SOFT website and read a blog by a mum whose daughter is nearly 5. I was thinking, ‘there is hope, she’s survived birth and we’re going to get her home’.

“She died on 4th September and we buried her a week later.

Hillingdon Times: Jodie has featured in a short film by Ceridwen Hughes to help other parents going through the same thingJodie has featured in a short film by Ceridwen Hughes to help other parents going through the same thing

“In the early days, it was intense grief and shock. In the New Year, I felt quite upbeat, thinking I was handling it well but then it goes downhill and comes back at the most unexpected times.”

The initiative was created in conjunction with Soft UK, a support organisation for those affected by the conditions.

“Baby loss sometimes feels like a whispered secret,” said filmmaker Ceridwen.

“No-one knows what to say to a grieving parent and often people are too afraid to even say the child’s name for fear of causing more upset and yet the parents I have spoken to yearn to remember and celebrate the lives of their child, no matter how short their life.

“This short film and exhibition have been created to encourage dialogue and to remind people that no matter how lonely their journey there are people who understand.”

11 families took part in the exhibition with parents Claire Edge from Chester and Jodie featuring in a short film.

‘You’re not alone’ explores the journey from diagnosis to the death of the babies, with parents highlighting the difficulties whilst ultimately celebrating their child’s lives and offering hope to others experiencing the same journey.

Jodie added: “To have a diagnosis sooner than we did would have just given us opportunity to speak to other parents, to seek advice from professionals that, you know, that was their field of expertise so that then, when the time came, we were armed with all the right questions to ask.”

David Knott, Interim CEO at The National Lottery Community Fund, said: “National Lottery funding is there to support everyone, including during times of acute challenge and personal strain.

"We are proud to have funded ‘You’re Not Alone’ – an initiative which shares messages of comfort and support on a topic that is not often talked about.

"We hope that these messages will help to connect bereaved parents to one another through a community that can make all the difference when coping with grief and loss.”

The exhibition and short film can be seen at – www.samebutdifferentcic.org.uk/yourenotalone

More than £30 million goes to good causes from The National Lottery across the country every week, making projects like these possible. To find out more about how The National Lottery supports good causes throughout the UK, visit www.lotterygoodcauses.org.uk