Brave Ella battles to 36th operation
ELLA Davies celebrated her second birthday this week – but in just a matter of days she will have to undergo her 36th operation.
Ella, from Cross Hands in Carmarthenshire, has to travel every three weeks to a Bristol hospital so that she can undergo a procedure that enables her to eat and drink. It’s due to the fact she was born with a rare condition whereby her oesophagus was not formed correctly.
Even before she was born in October 2019 she had also been diagnosed with dextracardia – her heart is on the right-hand side of her chest.
Her parents, Leah Evans and Arwel Davies, knew early on that Ella would have to be a fighter.
“From month six of the pregnancy I had to live in a hospital in Bristol in case she was born early,” said Leah.
Ella even had to be resuscitated at birth due to being born with a myriad of health conditions, including scimitar heart syndrome, right lung pulmonary hypoplasia, and tracheooesophagael fistula, the latter of which means she can’t swallow.
“On day three she had quite a big operation, which took six hours, to try to fix her oesophagus, which was split,” said Leah. “On top of that, part of her oesophagus was connected to her airways and she spent nine weeks in intensive care. Since then she has had 34 further operations which basically keep her oesophagus open.”
Driving Ella to Bristol has become a part of life for Leah and Arwel. However, things took an even more frightening turn during the summer.
“Ella woke up with a cough,” Leah explained, “and doctors thought she had bronchiolitis, but she just wasn’t breathing well and was being sick.
“A hole had been discovered in her airway and she was placed on advanced life support after pneumonia spread to her lungs, which had both collapsed, and she had to be sedated and ventilated for two weeks.
“The milk she had been drinking had been seeping into her lungs, which caused a huge chest infection and organ failure. She had a major operation at Great Ormond Street Hospital in London on July 22, which saved her life.”
Since returning from London, Ella is able to breathe and feed and go about her day as best as she can. However, the puree and milk she depends on for nutrition begins to get stuck in her oesophagus after around three weeks, hence the need for the regular trips across the Severn Bridge for yet more operations.
“It’s obviously quite stressful because we have to keep an eye on her all the time, to make sure she’s breathing and feeding OK,” said Leah.
“The plan was for her to have a big operation towards the end of this year that would make things easier and take away the need for the other operations every three weeks, but what she went through in July has put a halt to that plan, at least for now.
“Nothing is certain. Her surgeon said it is the most severe case he has seen in years. The hope is that as she gets bigger her oesophagus will get bigger, but we don’t know what the future holds really.”
This year alone, Ella has spent eight weeks in three different intensive care units, as well as the trips back and forth to Bristol. During their various trips to different hospitals, Leah and Arwel have been given accommodation close by, sometimes for weeks on end, thanks to three charity houses: Ronald Mcdonald House in Cardiff, Cots for Tots in Bristol, and The Sick Children’s Trust in London.
To say thank you to those charity houses, the couple’s colleagues are trying to raise money so that other families can receive similar support.
More than £2,200 has already been raised through a Go Fund Me page, and fundraisers will be completing a 202-mile bike ride on October 17 – the distance from Ella’s home to Great Ormond Street, where her life was saved in July. The donation website is at www.gofundme.com/f/bike-ridefor-little-ella