A couple, whose baby girl died at just over eight weeks old, are holding a family fund-raising day for Great Ormond Street Hospital, which they say did everything in its power to save their little one.
Hallie Louise Usher was born to parents Rebecca and Josh Usher on February 3, but from day one, her life was a fight to survive.
Little Hallie’s brain was not functioning as it should, meaning she couldn’t breathe properly at night, and despite weeks of tests at Great Ormond Street Hospital, she passed away on April 4.
Rebecca, originally from Sandy, and Josh are now holding a family fun day on August 17 at Parkside Community Hall, Woburn Street, Ampthill, to raise money for the charity as a thank you for its care and support.
Rebecca, 23, and Josh, 31, said: “Hallie was born in poor condition and needed 20 minutes of resuscitation before she took her first breath.
“Then, on day three of life, we were were given some very sad news that no parent wants to hear: they did not think Hallie would survive the night.
“We stayed by her side in tears and, as morning rose, our fighter Hallie was still alive, clinging on to life.”
Hallie was born at Bedford Hospital and taken to Luton and Dunstable Hospital at less than one day old for further care and tests.
But with Hallie seriously ill, she was sent to GOSH at around two weeks old, with a warning that she might not survive the ambulance journey.
Rebecca and Josh said: “When she arrived, we were taken to the Alligator ward; this was when we knew this place was special. We were given support from everyone we spoke to. Even the cleaners were amazing.
“The accommodation team provided us a lifeline and we could stay in while Hallie was in NICU. We could spend as much time as possible by her side and liaise with the specialist doctors each day.”
Hallie was then moved to New Dolphin ward at four weeks old with “fantastic nurses”, but sadly, the staff were still no closer to finding an answer, as several rare conditions were ruled out.
Hallie had been battling numerous issues, including hypoglycaemia, seizures, and a bloated stomach , preventing her from feeding, while she had to be intubated and even paralysed every day so the doctors and nurses could change her breathing tubes and tapes.
At around seven weeks old, doctors decided Hallie could no longer be intubated and they had to perform a tracheostomy to give her one last chance.
Josh said: “After two or three days it became clear that Hallie was not improving. The doctors sat us down and said what no parent ever wants to hear: ‘I’m afraid we have tried everything we can do.’ After a few days, Hallie was removed from the ventilator and brought in to us.
“She passed away peacefully in our arms. My wife was singing to Hallie and Hallie took her last breath on Earth.”
Before Hallie died it was agreed that her organs would be donated, and GOSH organised a family photo with her big brother, Harrison (two).
Hallie is buried in Houghton Conquest churchyard, the village where the family lives, while it is still unknown why she was poorly.
Rebecca and Josh would now love people to go along to the family fun day, from 10am - 4.30pm, which includes a bouncy castle, face painting, live music, food, entertainers, a raffle, tombola, and an auction including Disney On Ice tickets - and lots more.
Rebecca’s brother, Ben Thatcher, 26, who still lives in Sandy where he and Rebecca grew up, said: “Rebecca and Josh are coping really well. They are putting a lot of effort into raising money. We just want to raise as much as we can.”
Josh and Rebecca concluded: “We can say with our hands on our hearts, that without the doctors, the nurses, and the whole team at GOSH we would not have been able to spend precious time with our angel, Hallie.
“Thanks to the support of everyone at GOSH we got to spend eight special weeks with our ‘Princess Hallie’.
“Eight weeks that we did not think we would get, eight weeks that some other parents do not get the privilege of having. And for that, we can wholeheartedly say thank you.
“For us, we did not get a magic cure, but with the continued research and support from GOSH, maybe one day in the future a parent can take their child home from GOSH.”