In 2020, when Wales and the rest of the UK was reeling from pandemic restrictions, one Swansea mum’s whole world changed. Bethan Germon, a mum of two, tragically lost her four-year-old daughter, Lydia – and the whole family’s lives shattered into pieces.
Lydia had been born with an extremely rare genetic condition and in her infancy, she’d also been diagnosed with various other serious medical conditions. She needed round-the-clock care and Bethan, her husband Dave and their other daughter Caitlin, now 14, dedicated all their time to looking after Lydia and taking her to hospital appointment after hospital appointment and doctor visit after doctor visit.
Whilst there had been support for the family when Lydia was in palliative care, sadly the support dissipated after she passed away – something that’s quite common in the UK, with support for families after they experience a bereavement practically non-existent, Bethan said. She said her and her family were essentially left to fend for themselves through their devastating grief and had to learn to navigate their lives without Lydia without any proper support or practical help. To get the latest Swansea news stories to your inbox, sign up to our newsletter
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Remarkably, it wasn’t long before Bethan was channelling her grief into something productive, positive and inspiring – as she didn’t want other bereaved parents to ever feel as isolated or alone as she and her family had. Over time, she’s built up the now-registered charity ‘Advocates and Angels’ and it supports hundreds of parents every year. The charity provides support for parents and carers whose children have been diagnosed with disabilities or life-limiting conditions and also provides self-care packages for parents whose children are in hospital, helping them keep clean and calm during those stressful times. The charity is also in the process of setting up resources to help those who have tragically lost young children.
The charity is growing every month and supporting more and more parents and carers – and just last week, Bethan even appeared on BBC’s The One Show and was praised by her family, friends, the show’s host and special guest Gok Wan for her incredible work helping parents during the toughest times. You can read more about that here.
Bethan spoke to WalesOnline about her daughter, Lydia, and why she felt compelled to set up her charity to support families. “Lydia, she was everything. I never saw her disability; she was just Lydia!” Bethan told us, a few days after appearing on The One Show. “She was individual, she was her unique, authentic self. She was so, so authentic and she loved us, that's all that matters."
Lydia tragically passed away on July 16, 2020 and almost a year later, Bethan spoke to WalesOnline about the pain of losing a loved one during the pandemic.
Discussing the pain of losing a loved one at such a young age, Bethan said previously: "It's just been hell really, it's been so hard, a child's loss is just not the natural order of things, people don't know how to talk about it either, I think lockdown really hasn’t helped.
“While Lydia was alive, we just lived every single day, we never wanted to talk about 'what if' because it just put us in a place we didn't need to be in. I'm so pleased we did that as a family because I don't feel there was ever days wasted worrying 'what if' because we just enjoyed her which was lovely."
After Lydia passed away, Bethan said there was such little support for her and her grieving family that they felt alone, like they were the only ones going through such unimaginable heartbreak – and Bethan doesn’t want any other parent to ever feel that way.
“During palliative care, there is some support available but when you have a child with complex medical needs who needs 24-hours-a-day support, there’s never enough support there,” Bethan explained. “Plus, in the pandemic, there was even less support again – restrictions meant people didn’t come out and see her. And after she passed away, there was no support, nothing at all.”
Thinking back to when she was pregnant with Lydia, Bethan said she wishes she’d been given the tools she needed to really “advocate” for Lydia and stand up for her daughter and her medical needs. “We had the suspicion during my pregnancy that she would have complex medical needs, but there was such a lack of communication and her diagnosis of an underlying genetic condition only came at birth,” she said. “If I had been given the tools during pregnancy to advocate for Lydia, I don’t know where she’d be now.”
At birth, Lydia was diagnosed with a rare genetic condition called Oculofaciocardiodental syndrome (OFCD) – a genetic syndrome that affects the eyes, heart, face, and teeth of less than one in a million people. Lydia had the Dandy-Walker variant of the syndrome, which meant her cerebellum hadn’t developed properly.
She needed round-the-clock care from her family and medical professionals who had to do everything for her including feeding her and dressing her – and even making sure she was breathing.
Lydia was also later diagnosed with various other conditions, including hydrocephalus, a build-up of fluid in the brain that occurred after she had chemical meningitis in 2015, and she also acquired cerebral palsy after “surgery went wrong” in July, 2016.
Caring for her daughter was intense and mentally draining, Bethan said, and she’d often struggle to sleep as she was worrying about her so much. She kept a binder with all the notes and information she could get from Lydia’s appointments with doctors and nurses – and now supports other parents in keeping their own binders of information about their children, so they have everything they need at-hand and don’t have to go repeating themselves to different doctors as all the information is in one place.
“Part of what I want to do with Advocates and Angels is strengthen the relationships between families and doctors. It can be so hard for parents to know how to explain to others what they’re going through, but at Advocates and Angels we’ve sort of got three groups, three clubs and people can just say they belong to the club and we know some of what they’re experiencing,” Bethan said.
“One of our clubs is the Caterpillar Club, this group supports parents whose children have life-limiting conditions and disabilities, we provide resources and things they can put in their medical binder so they can keep advocating for their child – because no-one knows a child better than their parents.
“We also have the Chrysallis Club, this offers practical support to parents spending time in hospital with their children. This is in the form of care packages.”
She explained: “One night in 2017, I had to rush into hospital with Lydia. My phone had died and I didn’t have anything on me and I just needed a few things from the shop. I tried to buy a deodorant, toothbrush and toothpaste so I could clean myself up a bit while we were there and it came to £7! And, when you’re on Carers Allowance, which was about £64 per week at the time, that £7 is huge!”
With this in mind, Bethan and her friends soon started making care-packages for parents who have young ones in hospital. They made 20 packs originally, then were asked to make 30 more – and soon members of the public were donating things to go into the packs. Initially, they were offered at Singleton Hospital and Morriston Hospital in Swansea but Advocates and Angels’ care packages can now be found in every children ward at every hospital in Wales and are available for any family who needs them in an emergency.
“It may sound silly, but it’s surprising how much our self-care packages can help parents. They’ve got the basic toiletries people need to wash and freshen up in hospital, so they can reset their mindset a bit and really focus on being there with their child, rather than if they need to wash their face or brush their teeth or something.
“Thirdly, we have our Butterflies Club, this is a club for parents who have sadly lost a child. I have PTSD from the grief and it actually affects my executive functioning – people are always surprised by how much grief can affect you, not just mentally but physically as well.
“So far, we’ve run craft evenings to support bereaved families – and we’re in the process of setting up resources for people, completely for free. We’re hoping to develop them by the next quarter, by the end of summer 2023, it’ll be things like information on how to plan a child’s funeral, what to write on the headstone, how to break the sad news to family members – practical tips and advice.
“Of course, everyone grieves differently. I’m never going to tell anyone how to grieve – but I want to provide the things that I wish I had when Lydia passed away, in case they help other parents,” Bethan added. “Everyone has a similar but different walk through grief. Advocates and Angels is a space for families to grieve, a community for them to come together and have a sense of belonging in what can be a very isolating time.”
Bethan would like to thank her husband, Dave and their daughter, Caitlin for all their hard work for Advocates and Angels. She’d also like to thank her wider family and friends and fellow volunteers Jake, Janine and Hannah for dedicating so much of their time to the charity and supporting everyone involved.
If you’re experiencing loss and would like Advocates and Angels to support you, you can contact them via Facebook here. Alternatively, visit their website here.
The charity, based in the Cockett area of Swansea, is actively recruiting volunteers and Bethan would welcome messages or emails from anyone who has some time to give the charity, no matter how small.
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