Fred was born in early 2022, a beautiful baby boy whose arrival was expected to be straightforward and a time of great joy for his parents, Rhiannon and Tom, who live in Exeter. But life had other plans. Freds’ entry to the world was unexpected and very quick, resulting in a diagnosis of Hypoxic Ischaemic Encephalopathy which is a form of brain damage. His condition was very medically complex and was certain to lead to other challenges such as epilepsy. It was a shock to his parents, who were expecting a typical start to family life with their newborn along with their toddler, Eric.
In those early days, Fred's survival was always in question and the family endured some of the
toughest moments imaginable. Yet, as the days progressed, there were glimmers of hope. A few weeks after Fred’s birth, doctors began to speak of the possibility of bringing him home. It was a bittersweet milestone, one that came with a mixture of emotions and a huge team of support.
Among that team, right from the beginning, was Children’s Hospice South West (CHSW). Fred’s mum, Rhiannon, remembers those early conversations vividly:
“A couple of weeks after Fred was born – having been through some of the toughest days, our boy was in a position that medical professionals were talking about taking him home. With that came a huge team of help including our fabulous community nurse Jess. She made sure that CHSW was mixed into our help from the very start, and often answered our ongoing questions about how to handle this and that with, hospice, hospice hospice."
In March 2022, Fred was referred to Little Bridge House, CHSW’s hospice in North Devon.
Rhiannon first visited with Eric and baby, Fred, carrying a heavy heart and a thousand questions. She recalls:
I first went there with my toddler and poorly baby for an overnight visit – feeling overwhelmed, anxious of what this visit indicated and terrified of the ‘Starborn room’ which was
somewhere we might have to use. I left, still anxious, but
knowing there was a group of people who were really capable, experienced and on my side gave me a sense of security in a turbulent time.
Just 2 weeks later, the family made the difficult decision to leave the hospital and move to Little Bridge House for Fred’s end of life care. The hospice offered something the hospital couldn’t during the days of COVID restrictions; togetherness.
Rhiannon shares:
“It was only 2 weeks later when we were quickly making arrangements to move out of the incredibly stressful environment that was hospital and up to the hospice for our final visit. As upsetting as it was – we have some of the best memories there. It was during some of the strange COVID times, so we were heavily restricted in hospital in terms of all being together. At the hospice we were a complete family, and were able to support each other, and make some unforgettable memories.”
Fred died in April 2022, surrounded by his family, in the peaceful setting of the hospice. Though his time was short, his impact was immeasurable. Rhiannon reflects:
Fred passed away and we feel lucky that he had a chance to experience some peace in the beautiful setting that is Little Bridge House. The Hospice have continued to support us, and we them. The amazing fundraising events they run have
appealed to us and last year our team of 10 completed Ride for Precious Lives. Another opportunity for memory making and bringing our family together. Thank you for all the work you
continue to do.