The mother of a baby girl born with a rare genetic disorder has shared details of the short time she spent with her daughter for Baby Loss Awareness Week (October 9-15).
Jodie Worsfold, 33, from Carshalton, had baby Margot in the summer of 2020.
Margot was soon diagnosed with Edwards’ Syndrome – a rare and life-limiting condition – and lived for seven weeks.
Trisomy 13 and 18 linked with the syndrome are genetic disorders that affect each child differently. However, survival rates are low and whilst some children do survive longer, many babies do not live beyond their first birthday.
Moving photographs of Jodie and Margot taken by Ceridwen Hughes now feature in an exhibition called You Are Not Alone jointly funded by The National Lottery Community Fund and Illumina, a global leader in DNA sequencing.
— SOFT UK (@soft_uk) October 6, 2021
Partnering with the organisation Hughes founded called Same but Different, You Are Not Alone was launched for this week’s Baby Loss Awareness Week to help highlight the impacts of infant mortality and call for a more open discussion on greater support for parents affected.
Jodie described how no diagnosis was given until after Margot’s birth, with her first four weeks of life spent in NICU, before she was finally allowed home where she died peacefully under the care of the hospice.
Jodie said of her first visit to the NICU to see her baby: “At no point did anybody say ‘This is your lovely daughter. Do you want to hold her?’. We were just left there alone and in shock.
“Jamie and I couldn’t be at the incubator together because of Covid, which was really traumatic and distressing. That was her welcome into the world,” she said.
Hughes said the photo project aimed to also encourage the importance of talking about loss and grief, and celebrating the lives of babies who only lived for a short while.
To that end, Jodie shared further details of her story in the hopes of promoting that discussion.
“Coming home, leaving without your baby is not normal,” she said. “It was so hard to leave her. I remember going to sleep crying, with that deflated pregnancy tummy but she wasn’t in her bed next to me either. I’d looked at the SOFT website and read a blog by a mum whose daughter is nearly 5. I was thinking, ‘there is hope, she’s survived birth and we’re going to get her home’. She died on 4th September and we buried her a week later. In the early days, it was intense grief and shock. In the New Year I felt quite upbeat, thinking I was handling it well but then it goes downhill and comes back at the most unexpected times.”
Baby loss sometimes feels like a whispered secret,” said Hughes of her exhibition.
“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.”
For more on the exhibition and short film made by Hughes, click here.
For more on The National Lottery’s support for various causes throughout the UK, click here.