Teenager with ‘Wild syndrome’ that causes warty lesions and ‘extreme swelling from inside out’ is cured in world first
A TEENAGE girl has been cured of a super-rare medical condition with what doctors called a “world-first” treatment.
Kai Xue, 13, from Bradford, West Yorkshire, is one of just 21 globally recorded cases of a lymphatic condition called Wild syndrome, which causes warts.
She also had severe chylous ascites, where a milky fluid builds up in spaces within the abdomen.
After years of trying to find a cure for the latter, including flying to China for treatment, Kai was referred to the Royal Stoke University Hospital in Stoke-on-Trent.
The hospital performed a “world-first” treatment in which doctors blocked and repaired a leak in her liver, and Kai was allowed to go home five weeks later.
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, consultant interventional radiologist at Royal Stoke, was recommended to Kai’s family as a national expert in the illness.
Dr Mossad said Kai was in a “difficult situation” as the build-up of lymphatic fluid was causing pressure on her internal organs.
They widened the thoracic duct to drain the fluid, a procedure doctors said had not been carried out in the UK on a child before and only a handful of times on an adult.
But this failed to work and Kai was still accumulating fluid in her abdomen.
Surgeons then looked to see if the liver was the cause of the leak.
Dr Mossad said: “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 leak was discovered in the left lobe of Kai’s liver, which was repaired using a special surgical glue, before 28 litres of fluid was drained from her abdomen.
Kai was in hospital for five weeks before being discharged on February 9.
Dr Yvonne Slater, 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 added: “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.
“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.”
What are the symptoms of Wild syndrome?
WILD syndrome is a rare disease.
Symptoms include:
- Warty lesions
- Swelling
- Changes to the anus or genitals