A little girl was born with an extremely rare condition which took doctors four years to diagnose. Phoebe Parry-Owen, now nine years old, has branchial cleft cyst the fourth which leaves her prone to infections with long-term impact including painful cysts and sepsis.
The rare birth defect has only been recorded in the world under 30 times. It can be fatal if appropriate treatment is not sought.
Phoebe's formative years have been filled with regular operations to help counteract infections. Now Rhiannon Owen, Phoebe's mum, is now considering major surgery for her daughter, which carries big risks, reports North Wales Live.
What is branchial cleft cyst the fourth
Branchial cleft cyst the fourth takes the form of a lump that develops in the neck or just below the collarbone. Cysts are formed during development of the embryo.
In Phoebe's case, one of the tracts in her neck, whihc should be closed, was left open. The little girl has undergone surgery six times since birth, to remove cysts from her neck which vary in size, with the latest one that was removed six weeks ago, measuring four centimetres.
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Full removal of the deformed tract is an option, however this is major surgery that has risks attached and a difficult decision that Rhiannon is now facing. It is a lengthy procedure lasting between six and eight hours.
It could mean Phoebe loses movement in her tongue, or even her voice, due to the placement of the tract. Complications that may arise during surgery could impact little Phoebe's independence, as she could spend the rest of her life unable to eat or drink autonomously.
Mum-of-three Rhiannon said: "It's a scary decision to make. I know all surgeries come with risks, and the worst case with this one is that she could die.
"But if she carries on as she is, there's always a risk of the cyst growing and bursting, which could then cause sepsis which in itself is deadly. It's difficult because there are so few cases the doctors aren't able to give me any statistics to back up the pros and cons.
"If they were able to say, for example, she's got 80% chance of losing movement in her tongue, then I would choose to not do it. But even the long stays in hospital after having the cyst removed are dangerous for her, she has caught MRSA in the past."
Phoebe does not let her health get in the way of enjoying life. Rhiannon, who works in administration and is also in her final year studying software engineering, said: "Phoebe is genuinely the most well-behaved, beautiful little girl.
"I know everyone thinks this of their children but she is just amazing on every level. She loves football and is a massive Everton fan, she does gymnastics, swimming, paddle boarding and she's really creative.
"She says she wants to be a fashion designer in Paris, whilst also being a top footballer. She is very brave and doesn't let this get in her way, she's always smiling.
"Because she's so active it is a struggle for her to miss out on everything she loves each time she's hospitalised. When she does get a cyst it makes her really ill.
"She can't move her neck and she can't leave hospital, she has to be on IV fluids. It has also caused her some trauma mentally."
In addition to regular hospitalisations, Phoebe now suffers from anxiety and panic attacks. Rhiannon said at one point, Phoebe was so scared of more surgery, she tried to not mention the pain in her neck.
"Last time we were in hospital she had a clinical psychologist to talk her through it," Rhiannon said. "It's really helped and she's developed some new breathing techniques to help her when she's having a panic attack.
"When she's there, I stay with her all day and all night, and that does come with a lot of mum guilt around my other children. She has asked me a few times 'why me', and that is really difficult as a mum because I don't have the answers.
"She knows how rare the condition is, and she's decided that this means she's special. She's not always looking at it negatively.
"I can't stress enough how amazing the NHS have been with us over the years. Phoebe knows most of them at Ysbyty Glan Clwyd on a first name basis now and they are so good with her and at helping her anxieties."
