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Mum Leigh Smith says she will never have the words to convey her gratitude to East Anglia’s Children’s Hospices (EACH). Daughter Beatrice, or Bea, had the rare heart condition restrictive cardiomyopathy and died after just 89 days, in February 2014.
She received end of life care at Quidenham – the former EACH base in Norfolk – and Leigh has been a champion of the charity ever since, including speaking at the launch of The Nook Appeal and meeting The Princess of Wales.
“EACH has always been there for me and my children,” said Leigh.
“In the years immediately after Bea died, I found immense support and comfort from the monthly bereavement group, meeting people who remain close friends, who understand in a way only those who have lost a child can. The counselling was life-saving at times.
“It made me feel less alone and allowed me to talk and celebrate my little girl without feeling like I was a burden on others. EACH gave me an outlet to feel safe and normal throughout the intensity of those dark and turbulent early years.
“The care team helped (son) Elliott, too. Despite being a young child himself, he was able to navigate his grief and be comfortable about his feelings.”
Leigh says she does not know how she would have coped without EACH.
“Every single person there has held our hands throughout this unimaginable journey,” she said.
“Without them, I don’t think I’d be the person and mum I am today. They continue to be there when we need them, with events and memory days, and if ever we feel things are crumbling we have a safety net to support us.
“I’ll never have the words to truly describe the gratitude I have for EACH. The staff are part of our family journey and will always be part of Bea’s story.
“They’re caring, compassionate, real and provide a guiding hand to take you through the blackest tunnel anyone can experience. They’ve allowed me to see glimpses of light and colour again when there were times I truly thought I’d only ever see darkness.
“They sat with me and listened with a patience and kindness that’s priceless.”
Despite Bea’s tragically short life, Leigh looks back with huge love and fondness when reflecting on her daughter’s 89 days.
“She was a fighter and, despite all the struggles, she still had a smile that would make you melt and the most captivating dark brown eyes,” she said.
“Her personality shone through. She was cheeky, but always with a knowing look as though she knew something about her was unique and special. We called her our little tortoise because she used to squirm like one waking up out of its shell.
“We were lucky enough to experience Christmas together, blissfully unaware of how poorly she was and how hard she must have been fighting even then. She gave us wonderful memories as a family of four and those memories are precious beyond words.”
For the first six weeks of Bea’s life, she struggled to gain weight and feed. However, at that stage, Leigh still had no idea how unwell she was.
On 10th January 2014, she took her to the doctors and was told to go directly to the hospital, where she was found to be in critical cardiac failure. Bea was diagnosed with the rare heart condition restrictive cardiomyopathy, which affects one in a million children.
“We knew Bea was one in a million but never wanted it to be for all the wrong reasons,” said Leigh.
“She was transferred to Great Ormond Street Hospital and progressively became more and more unwell. She had episodes at home but then required emergency ventilation and admission to Southampton paediatric intensive care unit and then later to GOSH’s cardiac intensive care. She was listed for a heart transplant but, sadly, her heart was just too weak.”
Leigh says the next chapter was the hardest period of her life. Elliott was just three and a half at the time and their world crumbled.
“We were thrown into a medicalised world of intensive care, tubes, devastating decisions, and prognosis,” said Leigh.
“Myself and Bea’s dad are both health professionals (physiotherapists). However, when it’s your child, you become vulnerable and completely helpless. We knew her options were limited and the outcome was likely to be poor, with most babies not surviving until their first year. Her only options were an artificial heart or heart transplant.
“We desperately wanted to keep life as normal as we possibly could for Elliott. However, a situation that was terrifying for us adults must have been bewildering and confusing for a three-year-old.
“It was a truly horrific time, but, as a parent, when you’re thrown into that situation, you have little choice but to carry on, even though inside you are beyond broken, shattered into a million pieces. My baby was fighting for her life so there was no way I could crumble in the face of her courage.”
Bea became progressively weaker and was not strong enough to cope. She died at Great Ormond Street on 24th February 2014.
“Bea and my other two children are my inspiration,” said Leigh.
“Her tenacity and fight for life inspired me to cherish every moment and to enjoy the highs and lows of life, because all of it’s a privilege.”
