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

Claire Li, 47, from Bootle suffered two losses due to Edwards’ syndrome – a rare but life limiting condition – with baby Hope dying in utero at 18 weeks, and Arlo living for 20 days.

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, in conjunction with Soft UK which provides information and support to families affected by Trisomy 13 (Patau's Syndrome) and Trisomy 18 (Edwards' Syndrome) 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.

Claire’s 12-week scan with Hope showed worrying signs, but the family were given very little information, but were told it could possibly be Edward’s Syndrome – Hope died six weeks after the scan.

Claire said: “We were told the chances of it ever happening again were very slim and that we wouldn’t have another child with it; any further pregnancy would be fine. So, after everything that happened with Hope, every week that Arlo stayed strong was like a little gift.”

Unfortunately, Arlo was also diagnosed as having Edwards’ Syndrome in utero – despite a healthy 12-week scan and Claire gave birth by C-section at 39 weeks.

Claire added: “We wanted heart scans and we wanted his lungs checked out. We decided that on the Friday and had a heart scan booked on the Tuesday, but he died on the Monday, at 20 days old.

“We didn’t want him in pain, and if they intubated him, he would have ended up in more pain. It was comforting to see that the nurses and doctors were just as upset as we were. Arlo touched them all and I knew they were doing their best for him.

“At his funeral, the celebrant said, ‘Arlo stands for Always Remember to Love Others, because all he knew in his short life was love’. That’s it, that’s all he knew.”

Photographer and Founder of the Same but Different charity, 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.

“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 Worsfold from Surrey 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.

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