By Douglas Whitbread via SWNS
A teen diagnosed with an incredibly rare genetic condition has been cured by a team of pioneering British doctors – in a world first.
Kai Xue, 13, was just one of just 21 people globally struck down with a disease called WILD syndrome, which impairs cells, causes warts and leads to infections.
While she was also diagnosed with severe chylous ascites, a potentially fatal illness that caused 28 liters of lymphatic fluid to collect within her abdomen.
Kai’s mum Ning Chen said she spent her daughter’s childhood visiting different hospitals – and had even travelled to China to see if she could get treatment there.
But more than a decade later, Kai was finally cured after she was diagnosed by Dr. Mona Mossad, a national expert in lymphatic intervention.
The doctor went on to work alongside experienced surgeons to remove the excess fluid from Kai’s body – while also fixing a leak that had developed in her liver.
After a five-week stay at Staffordshire Children’s Hospital at Royal Stoke, she was finally able to return home to her grateful family.
Relieved mum Ning 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.”
When Dr. Mossad, a consultant interventional radiologist, was first introduced to Kai, from Bradford, West Yorks., there was still some debate over her diagnosis.
But she offered some detailed analysis of her health woes and then began putting together a treatment plan, which had never been offered to a child before.
Dr. Mossad said: “Kai was in a very difficult situation.
“After being seen by different centers in the UK and China, nobody could diagnose the cause of the leak that was leading to the build-up of lymphatic fluid into her abdomen over the years.
“That leak caused two major problems. The first being the large amount of fluids which were leaking into her abdominal space causing severe abdominal distension and pressure on internal organs.
“The second was that if we drained these fluids to relieve the pressure, we would be removing all the nutritional fluid from her body- protein, fat, antibodies, electrolytes and white blood cells.
“These types of leaks are usually very difficult and multifactorial, there is not just one cause for it. So clinically and radiologically we tried to eliminate the causes starting with the least-invasive.
Dr. Mossad said her team initially carried out a procedure to improve her lymphatic drainage, which was successful.
However, they still found that fluid was accumulating in her body.
So they then embarked on more challenging surgery to block lymphatic vessels in her liver that measured less than one-tenth of a millimetre in adults
Dr. Mossad said: “Because of Kai’s age and size, we had to especially order smaller needles that would work.
“We successfully managed to find a large leak that was going into her abdominal cavity from the left lobe in her liver and were able to repair the leak using a special surgical glue.”
Kai was also under the care of Dr. Yvonne Slater, Consultant Paediatric Gastroenterologist at Staffordshire Children’s Hospital at Royal Stoke, over this period.
And she was thrilled that the teen had responded so well following her treatment.
Dr. Slater added: “We are all over the moon for Kai, who is the first child to undergo this treatment anywhere in the world.
“It was an extremely long, difficult, and specialized case, over the two procedures that involved the skills and dedication of many teams at UHNM including Radiology, Anaesthetics, Children’s Intensive Care, Gastroenterology and Dietetics.
“Despite this, Kai has remained remarkably robust, and after coming to us very weak, she has left a completely different girl, smiling for the first time in a long time.
“Once a patient has been with us for a period of time, you get to know them and the family, and I’m delighted that everybody has moved heaven and earth to do the right thing for them.”
Ning praised the doctors and surgeons involved in her daughter’s treatment following the successful outcome.
She said: “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 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.”
