Mothers across the UK shared their heartbreaking stories of child loss in a new campaign and exhibition designed to provide more support to grieving parents and encourage people to speak more openly and honestly about grief and child loss.
Jointly funded by the UK’s largest community funder, the National Lottery Community Fund, and Illumina, a global leader in DNA sequencing, the campaign and exhibition You’re Not Alone presented – fifteen). It calls for a more open discussion and aims to provide more support to parents whose children have died from the life-limiting genetic birth disorder known as trisomy 13 or 18.
The project was sponsored by the Same but Different charity in collaboration with S. brought to life often UK Providing information and support to families affected by Trisomy 13 (Patau Syndrome) and Trisomy 18 (Edwards Syndrome). Unfortunately, survival rates for children born with trisomy 13 or 18 are low. While some children survive longer, many babies do not survive past their first birthday.
Same but Different charity photographer and founder Ceridwen Hughes started the project to raise awareness of the importance of talking about the grief of losing babies while celebrating the lives of babies, no matter how short their life is. In addition to haunting images and effective films, the project also created a piece of music that represents the voices of the mothers of the composer Michael Speed.
“Losing a baby sometimes feels like a whispered secret,” said filmmaker Ceridwen. “Nobody knows what to say to a grieving parent, and often people are too scared to even say the child’s name for fear of causing more excitement, yet long for the parents I spoke to have to remember and celebrate your child’s life, no matter how short their life is.
“This short film and exhibition, funded by The National Lottery and Illumnia, were created to encourage dialogue and remind people that no matter how lonely their journey is, there are people who understand. Baby Loss Awareness Week offers everyone affected by pregnancy and baby loss a safe and supportive space to share their experiences and to feel like they are not alone. “
Eleven families from across the UK took part in the online exhibition, with parents Jodie Worsfold from Surrey and Claire Edge from Chester starring in a short film entitled “You’re not alone”.
The films capture the families’ emotional experiences firsthand and explore their path from diagnosis to the death of their baby / child. The featured individuals highlight the difficulties as they ultimately celebrate their children’s lives and give hope to parents who are going through the same journey.
One of the featured mothers is Jodie Worsfold from Surrey, whose daughter Margot Vera Jean died after being diagnosed with trisomy 18.
“They suspected Margot had something chromosomal and did some genetic testing,” says Jodie.
“When you see the list of typical characteristics of a child with trisomy 18, it would be easier to tick the ones that Margot didn’t have! We got the result after waiting 10 days. They sat us down and we just knew it was bad news. The senior doctor looked very gloomy and the nurse was sitting next to me with the handkerchiefs. The doctor had a printout from the Internet, an A4 sheet of paper, and said, “I’m really sorry, this is not good news. Your daughter has trisomy 18, Edwards syndrome. He said it was a life-limiting condition and few children live past their first birthday.
“Diagnosing earlier than we would have only given us the opportunity to talk to other parents, to get advice from experts who, you know, were their specialty, so that when the time came, we would be prepared to ask the right questions “
David Knott, Interim CEO of the National Lottery Community Fund, said, “The National Lottery funding is there to support everyone, even in times of acute challenge and personal stress. We are proud to have funded You’re Not Alone – an initiative that spreads messages of comfort and support on a subject that is not often talked about. We hope these messages will help connect grieving parents through a community that can make a difference when it comes to grief and loss. “
The exhibition and the short film can be seen at www.samebutdifferentcic.org.uk/yurenotalone
More than £ 30 million goes to National Lottery charities across the country every week to help make projects like this happen. To learn more about how The National Lottery supports causes across the UK, visit www.lotterygoodcauses.org.uk