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Toddler turning two with rare illness is about to have her 36th operation


A toddler is returning to the operating theatre for her 36th operation in two years.

Ella Davies has to travel to hospital every three weeks for a procedure that allows her to eat and drink, WalesOnline reports.

She suffers from a rare condition which stops her from swallowing and means she requires surgery to keep her oesophagus open.

The youngster, who celebrated her second birthday this week, has spent eight weeks in three different intensive care units so far this year.

She will now have to undergo her 36th operation in just a matter of days.

When Ella, from Cross Hands in Carmarthenshire, Wales, was born her oesophagus was not formed correctly.

Even before her birth in October, 2019 she had also been diagnosed with Dextracardia, which means her heart was on the right hand side of her chest.




The plucky youngster has spent eight weeks in intensive care so far this year
(

Image:

Leah Evans)




Her parents, Leah Evans and Arwel Davies, knew early on that Ella would have to be a fighter.

Leah said: “From month six of the pregnancy I had to live in a hospital in Bristol in case she was born early, and if she was I needed to be in the best place for her.”

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 Tracheo-Oesophagael 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.



Ella pictured here with her parents Leah Evans and Arwel Davies
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Image:

Leah Evans)






When Ella was born her oesophagus was not formed correctly
(

Image:

Leah Evans)




“On top of that, part of her oesophagus was connected to her airways and she spent nine weeks in intensive care. Since that first operation she has had 34 further operations which basically keep her oesophagus open.”

Despite being most parents’ worst nightmare, driving Ella to the hospital in Bristol has become a part of life for Leah and Arwel.

However, things took an even more frightening turn during the summer.

At first she only had a bit of a cough, but the situation soon involved a life-saving operation, this time in London.

“Ella woke up with a cough and doctors thought she had bronchiolitis – but she just wasn’t breathing well and was being sick,” Leah said.



Ella turned two this week but will have to undergo her 36th operation in a matter of days
(

Image:

Leah Evans)




“She ended up spending 10 days in the high dependency unit in Glangwili Hospital in Carmarthen, but on day 10 she deteriorated and was taken to the University Hospital of Wales in Cardiff, before being taken to see her usual specialist in Bristol.

“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.



The youngster’s surgeon said her case is the most severe he has seen in years
(

Image:

Leah Evans)






Her family hope her oesophagus will get bigger as she grows
(

Image:

Leah Evans)




“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.

“Our main worry is that if she continues to have more and more operations it might cause her to have difficulties with her breathing, like she had in July.”

This year alone, Ella has spent eight weeks in three different intensive care units, as well as the trips back and forth to Bristol for operations that have now become routine.



Trips to hospital have become a frequent occurrence for Ella
(

Image:

Leah Evans)






Her parents have raised more than £2,200 to help other families receive support
(

Image:

Leah Evans)




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During their various trips to different hospitals, Leah and Arwel have been provided with accommodation close by thanks to three charity houses – Ronald McDonald House in Cardiff, Cots for Tots in Bristol, and The Sick Children’s Trust in London.

All have made it possible for Ella to have her parents nearby as she has undergone various operations and stayed in hospitals, sometimes for weeks on end.

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 in west Wales to Great Ormond Street, where her life was saved in July.

All the money raised will be split between the three charities, who have all made desperate times just a little bit easier for Leah and Arwel over the past two years. If you wish to donate, you can do so here.









She and partner Arwel previously raised money for the Wales Air Ambulance, which airlifted Ella from Bristol to Swansea in 2019.

“On one occasion the charity house was full and I had to pay £100 for a night in Bristol as it was the only room I could find at the last minute,” revealed Leah.

“But, thankfully, that hotel stay was a one-off: we’d be bankrupt by now if we had to pay for hotels all the time!”

Ella herself is oblivious to the whirlwind going on around her, and even smiles as she enters the ward every three weeks ready for yet another operation.







“She goes into the hospital smiling because she knows all the nurses!” said Leah.

“That’s lovely of course but also sad because it reminds us how often she’s been there.

“The last time we went, in September, I was holding her hand as they gave her the general anaesthetic and she just looked up at me and said ‘ta-ta’ as she closed her eyes. She knew she was being put to sleep again.

“I had a bit of an emotional moment then I must admit.”


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