A bereaved mum whose baby died at just 89 days old has paid tribute ahead of what would have been her daughter’s 10th birthday.
Baby Beatrice, “Bea”, was born with a rare heart condition called restrictive cardiomyopathy and she died in February 2014.
Despite her tragically short life, mum Leigh Smith looks back with huge love and fondness when reflecting on her daughter 89 days.
She said: “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.
“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.
“She gave us wonderful memories as a family of four and those memories are precious beyond words.”
READ MORE: Bittersweet goodbye as two Norfolk charities bid farewell to each other
READ MORE: TimeNorfolk announces William Armstrong OBE as new patron
The first six weeks of life, Bea struggled to gain weight and feed.
On January 10, 2014, her mum 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 restrictive cardiomyopathy, a condition that affects just one in a million children.
Ms Smith added: “We knew Bea was one in a million but never wanted it to be for all the wrong reasons.
“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 Great Orman Street Hospital’s cardiac intensive care. She was listed for a heart transplant but, sadly, her heart was just too weak.”
READ MORE: Grace Robinson, 20, who died following a crash in Wisbech 'lit up every room'
READ MORE: Ukraine family names baby born at N&N after former PM Boris
She said the next chapter was the hardest period of her life. Their "world crumbled", and she tried to support her son Elliott, who was just three and a half at the time.
She added: “We were thrown into a medicalised world of intensive care, tubes, devastating decisions, and prognosis.
“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.
“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 and my other two children are my inspiration
“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.”
Bea became progressively weaker and eventually was not strong enough to cope. She died at Great Ormond Street on February 24.
Ms Smith said she will never have the words to convey her gratitude to East Anglia’s Children’s Hospices (EACH) who supported Bea with end-of-life care at Quidenham, the former EACH base in Norfolk.
She has also gone on to become a tireless supporter of the charity.
She lives with son Elliott, now 12, daughter Ottilie, five, and their dog Betsy, and she will be taking on EACH’s Pier 2 Pier walk – from Cromer to Great Yarmouth – on June 10, ahead of Bea’s birthday on November 28.
Comments: Our rules
We want our comments to be a lively and valuable part of our community - a place where readers can debate and engage with the most important local issues. The ability to comment on our stories is a privilege, not a right, however, and that privilege may be withdrawn if it is abused or misused.
Please report any comments that break our rules.
Read the rules here