Baby Loss Awareness Week 2021: Exhibition to support families affected by Patau's and Edward's Syndrome

A Burgess Hill mother has shared her story of child loss as part of a new campaign and exhibition.

Wednesday, 13th October 2021, 10:13 am
Updated Wednesday, 13th October 2021, 10:14 am
Lisa Wright

Lisa Wright, 51, from Burgess Hill was pregnant with baby Chloe 23 years ago, who was diagnosed with Edwards’ Syndrome – a rare and life limiting condition – at 19 weeks in utero.

Lisa is now featured in 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.

Survival rates for baby’s with Edwards’ Syndrome, also known as trisomy 18, are low with many babys not making it to full term, and those that do don't tend to live beyond their first birthday so many couples choose to have a termination for medical reasons.

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Baby Loss Awareness Week 2021: Families share their stories

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’.

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.

Lisa said: “When I saw the consultant – an older doctor, very old school – there wasn’t really an option of continuing with the pregnancy.

“He was anxious to book me in for a termination. It was all very rushed and, looking back now, I really should have had more time to digest that information rather than being pushed to terminate.

“Although for us as a couple we did come to that conclusion, as we were told that the condition wasn’t compatible with life. Our baby probably wouldn’t survive the pregnancy, let alone be born alive. We were given no real hope at all. I now work for SOFT as a support person. I see this role as a positive to come from something that was difficult. It’s lovely being able to help somebody and say, ‘I know what you’re going through’. I felt totally alone in the Trisomy 18 situation.”

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.

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