Kai Xue with her mom and team members from University Hospitals at North Midlands – NHS Trust via SWNSA teen diagnosed with an incredibly rare genetic condition has become the first person in the world to be cured, thanks to a team of pioneering British doctors.
13-year-old Kai Xue is one of just 21 people in the world stricken with a disease called WILD syndrome, which impairs cells, causes lymphedema and warts, and leads to infections—but she was also diagnosed with severe chylous ascites, a potentially fatal illness that caused 28 liters of lymphatic fluid to collect within her abdomen.
It took over a decade to find a special team of doctors who could locate the cause of the fluid buildup from chylous ascites—and stop it for good.
Kai was born with an abnormal lymphatic system and her mother Ning Chen said they spent her daughter’s childhood in the UK 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, which is run by University Hospitals at North Midlands NHS Trust, she was finally able to return home to her grateful family.
“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,” said her relieved mom.
“We tried everything, from restrictive diets to even flying to China for treatment. “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, there was still some debate over her diagnosis.
“Kai was in a very difficult situation. 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 distention 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,” recalls Dr. Mossad.
After initially carrying out a procedure to improve her lymphatic drainage, they then embarked on more challenging surgery to block lymphatic vessels in her liver that measured less than one-tenth of a millimeter.
Dr. Mossad said that because of Kai’s age and size, they had to special 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, a Consultant Pediatric Gastroenterologist at the teaching hospital, who was thrilled that the young teen had responded so well.
“We are all over the moon for Kai, who is the first child to undergo this treatment anywhere in the world.” said Dr. Slater.
“It was an extremely long, difficult, and specialized case, over the two procedures that (also) involved the skills and dedication of many teams at University Hospitals at North Midlands—including Radiology, Anesthetics, 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.
“I’m delighted that everybody has moved heaven and earth to do the right thing for them.”
Kai’s mother praised the doctors and surgeons following the successful outcome.“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.”Teen with Incredibly Rare Genetic Condition is Cured in World First By British Doctors
