Sussex mother recounts her grief in Ceridwen Hughes exhibit
A MOTHER spoke of her heartbreaking loss and feeling “rushed” into having her baby aborted.
Lisa Wright was 19 weeks pregnant when she learned the tragic news that her baby was terminally ill and had to have an abortion.
Routine blood tests at 14 weeks used to detect Down syndrome revealed there was an increased risk. Lisa went for further testing.
The sonographer did not reveal anything, but the shape of the baby’s head was triangular on the scan. After that, she got a phone call telling her that the baby had Down’s syndrome.
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Trisomy 13, known as Patau syndrome, and trisomy 18, known as Edwards syndrome, are genetic disorders that affect every child differently. Survival rates are low, and while some children survive longer, many babies do not live past their first birthday.
Lisa aborted baby Chloe during her 19th week of pregnancy.
The 51-year-old said when she saw the consultant she felt “there was no real option to continue the pregnancy.”
âHe was anxious to book me for a layoff. It was all very rushed and, looking back, I really should have had more time to digest this information, âshe said.
âAlthough for us as a couple, we came to this conclusion because we were told that the condition is not compatible with life.
“Our baby would probably not survive the pregnancy, let alone be born alive. We have not been given any real hope.”
Lisa, from Burgess Hill, who had a two-year-old son at the time, was unable to find out more about Edwards syndrome and was pressured to terminate her pregnancy.
And now, 23 years after her daughter’s death, Lisa has joined the Soft UK charity, which provides information and support to families affected by Down’s syndrome and Down’s syndrome.
Lisa said: âI now work for Soft as a support person. I see this role as positive for coming from something that was difficult.
“It’s nice to be able to help someone and say ‘I know what you’re going through’. I felt totally alone with Down syndrome.”
Ceridwen Hughes, photographer and founder of the Same but Different charity, which uses storytelling techniques to share people’s stories, created a project to raise awareness of the importance of talking about grief after losing a baby, while celebrating the lives of babies called You ‘Are Not Alone.
It was launched for Baby Loss Awareness Week. It is jointly funded by the National Lottery Community Fund, the largest funder of community activity in the UK, and Illumina, a world leader in DNA sequencing. Loss Awareness Week is set up to help generate a more open discussion and aims to provide more support for parents whose children have died due to genetic life-limiting birth disorders such as Down’s syndrome.
Ceridwen said: âThe loss of a baby sometimes feels like a whispered secret.
“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 upsetting them further and yet the parents I have spoken to yearn to remember and celebrate.” their child’s life, no matter how short their life span.
âThe short film and exhibit were created to encourage dialogue and remind people that no matter how lonely their journey is, there are people who get it.
11 families participated in the exhibition and some parents are showing a short film.
David Knott, Acting CEO of the National Lottery Community Fund, said, âNational Lottery funding is there to support everyone, including during times of acute challenge and personal tension.
âWe are proud to have funded ‘You’re Not Alone’ – an initiative that shares messages of comfort and support on a topic that is not often talked about.
“We hope these messages help connect bereaved parents to one another through a community that can make all the difference as they face grief and loss.”
The exhibition and the short film can be seen at – www.samebutdifferentcic.org.uk/yourenotalone
Over Â£ 30million goes to national lottery good causes across the country each week, making projects like these possible. To find out more about how the National Lottery supports good causes across the UK, visit www.lotterygoodcauses.org.uk
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