A Chester 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 Edge from Blacon had baby Dylan in 2009, who suffered with a chromosomal abnormality called Patau Syndrome, and at six weeks old was diagnosed with cerebral palsy but went on to live for nine years.
Claire discovered that Dylan had three major heart defects including hypoplastic left heart – a condition in which one side of the heart is too small – at her 20-week scan.
On giving birth to Dylan, Claire also found out that he had a complicated blood sugar disorder which caused him to have a stroke within his first few hours of life.
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 said: “We got an appointment when Dylan was about 14-months-old, almost a year later. The day before the appointment, we received a letter saying, ‘your child has Patau Syndrome’.
“We went to see them, and there wasn’t an awful lot more information given to us from the Geneticist. They just said: ‘Well, we don’t know what he’s going to do. We don’t know whether he is going to survive this. We know that children with Patau Syndrome are, generally, incompatible with life’.
“It was the first time that I’d heard that term used. I didn’t realize there was ever such a thing as being incompatible with life – but my boy is sat in his chair – trying to rock himself out of this room – and he is not incompatible with life at that time.
“Dylan was 1 month before his 10th birthday when he passed away and he lived a very full life. Dylan had a go at everything: he went on steam trains; on power boats; he climbed to the top of castles; he travelled the length and breadth of the country.”
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, starring 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
Read more here: Source link