Girl, 13, cured of rare disease that causes extreme swelling in Royal Stoke 'world first'

(Left to right) Dr Yvonne Slater, Consultant Paediatric Gastroenterologist, Ning Chen, Kai Xue, and Dr Mona Mossad, Consultant Interventional Radiologist.
Left to right: Dr Yvonne Slater, Consultant Paediatric Gastroenterologist, Ning Chen, Kai Xue, and Dr Mona Mossad, Consultant Interventional Radiologist. -Credit:UHNM

A teenage girl has been cured of a rare and complex medical condition after what doctors called a 'world-first' treatment. Kai Xue, 13, is believed to be one of only 21 people worldwide have been diagnosed with Wild syndrome.

It causes extreme swelling as lymphatic fluid to accumulate in the abdomen, as well as warts. Despite numerous attempts to find a solution, including travelling to China for treatment, Kai's breakthrough came when she was referred to Royal Stoke University Hospital.

The Stoke-on-Trent hospital successfully performed a pioneering procedure to block and repair a leak in her liver, allowing Kai to return home after five weeks.

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Her mother, Ning Chen, said: "Kai was born with an abnormal lymphatic system, and her left arm was very swollen. Throughout her childhood we were under the care of a number of different hospitals to try to find out what the matter was, but nobody knew the cause."

"We tried everything, from restrictive diets to even flying to China for treatment. Having been transferred to so many hospitals, we're very excited to finally be going home, I still cannot believe it."

Dr Mona Mossad, a national expert in lymphatic intervention and a consultant interventional radiologist at Royal Stoke, was recommended to Kai's family. She characterised the toddler's predicament as a "difficult situation".

The accumulation of lymphatic fluid within the young girl's abdomen was exerting pressure on her internal organs.

The medical professionals began by dilating Kai's thoracic duct to improve lymphatic drainage a procedure that had not yet been conducted on a child in the UK and only few times on adults. However, this technique proved unsuccessful as Kai continued to amass fluid within her abdominal region.

Consequently, the doctors carried out investigations to discern whether the liver was the source of the leak.

Dr Mossad shared: "This was a very challenging procedure, as we needed to visualise and block lymphatic vessels in the liver that measure less than one tenth of a millimetre in adults. Because of Kai's age and size, we had to especially order smaller needles that would work."

The team located the leak in the left lobe of her liver which was subsequently repaired using a unique surgical adhesive. This was accompanied by the draining of 28 litres of fluid from her abdomen.

Following a five-week stay at the hospital, Kai was discharged on February 9. Dr Yvonne Slater, a consultant paediatric gastroenterologist, said: "We are all over the moon for Kai, who is the first child to undergo this treatment anywhere in the world."

Ms Chen expressed her heartfelt gratitude, saying: "Kai is so special to me and I would like to say a very big thank you to everybody at both Staffordshire Children's Hospital at Royal Stoke and UHNM (University Hospitals of North Midlands) for working hard to look after her."

She continued with high praise for the staff: "I'm so happy for the excellent care, and everybody was so nice and helpful and they tried their best to help us. The whole team is amazing."

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