The heartbreaking story of the loss of Carshalton’s mother

The mother of a baby girl born with a rare genetic condition has shared details of how little 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 quickly diagnosed with Edwards syndrome – a rare and life-limiting condition – and lived for seven weeks.

Syndrome-related trisomies 13 and 18 are genetic disorders that affect each child differently. However, survival rates are low, and while some children survive longer, many babies do not live past their first birthday.

Moving photographs of Jodie and Margot taken by Ceridwen Hughes are now featured in an exhibition called You Are Not Alone jointly funded by the National Lottery Community Fund and Illumina, a world leader in DNA sequencing.

In partnership with the Hughes-founded organization called Same but Different, You Are Not Alone was launched this week for Baby Loss Awareness Week to help highlight the impacts of infant mortality and call for a discussion. more open to greater support for affected parents.

Jodie described how no diagnosis was given until Margot was born, with her first four weeks of life spent in the NICU, before she was finally allowed to return home where she died peacefully under care of the hospice.

Jodie said of her first visit to the neonatal intensive care unit to see her baby: “At no point did anyone say, ‘She’s your lovely daughter. Do you want to hold it? We were left alone and in shock.

“Jamie and I couldn’t be together at the incubator because of Covid, which was really traumatic and distressing. It was her welcome to the world,” she said.

Hughes said the photo project was also meant to encourage the importance of talking about loss and grief, and celebrating the lives of babies who have only lived a short time.

To that end, Jodie shared more details about her story in hopes of furthering this discussion.

“Coming home, leaving without a baby is not normal,” she said. “It was so hard to leave her. I remember falling asleep crying, with that baby belly deflated, but she wasn’t in her bed next to me either. I had checked the website. from SOFT and read the blog of a mother whose daughter is almost 5 years old. I was like “there is hope, she survived the birth and we are going to take her home.” She died on September 4th and we buried her a week later. At first it was intense heartache and shock. In the new year I was feeling quite optimistic, thinking I was handling it well, but it tumbles down and comes back to the most unexpected moments. ”

Losing a baby sometimes feels like a whispered secret, ”Hughes said of his exposure.

“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 even more and yet the parents I have spoken to yearn to remember and celebrate their child’s life, no matter how short their life is. This short film and exhibit was created to encourage dialogue and remind people that no matter how lonely their journey is, there are people who understand. ”

To learn more about the exhibition and the short film directed by Hughes, click here.

To learn more about the National Lottery support for various causes across the UK, click here.

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