A groundbreaking medical achievement marks a significant milestone as a British medical team successfully cures a teenager suffering from an exceedingly rare genetic disorder. Thirteen-year-old Kai Xue, one of only 21 individuals globally diagnosed with WILD syndrome, faced a complex array of challenges stemming from this condition, including cell impairment, lymphedema, and recurrent infections. Moreover, Kai battled a life-threatening complication known as severe chylous ascites, which resulted in an alarming accumulation of 28 liters of lymphatic fluid in her abdomen.
Kai’s journey to recovery was arduous, spanning over a decade of relentless pursuit for effective treatment. Her mother, Ning Chen, recounted the family’s tireless efforts, seeking medical interventions across various hospitals in the UK and even exploring options in China. However, it wasn’t until Kai’s encounter with Dr. Mona Mossad, a distinguished authority in lymphatic intervention, that a breakthrough emerged.
Dr. Mossad’s expertise paved the way for a comprehensive diagnosis and treatment plan tailored to Kai’s unique condition. Collaborating closely with skilled surgeons, the medical team embarked on a meticulous process to address the underlying causes of Kai’s ailment. This involved not only draining the excessive lymphatic fluid from her body but also repairing a critical leakage in her liver, a crucial step towards ensuring long-term stability.
Following a rigorous five-week hospitalization at Staffordshire Children’s Hospital, under the care of the Royal Stoke team, Kai emerged victorious, finally liberated from the burdens of her debilitating condition. The successful culmination of this pioneering medical endeavor brought immense relief and joy to Kai’s family, marking a triumph of perseverance, innovation, and compassionate care.
“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,” her mom said, but expressed relief now that they’re over the entire ordeal.
“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.”
Upon their initial encounter, Dr. Mossad, a consultant interventional radiologist, entered a scene where Kai’s diagnosis was still under debate.
“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,” Dr. Mossad said as he looked back.
Following the initial procedure aimed at enhancing her lymphatic drainage, they proceeded with a more intricate surgery targeting lymphatic vessels in her liver, some measuring less than a tenth of a millimeter.
Dr. Mossad explained that due to Kai’s age and physique, they had to procure smaller needles tailored for the task.
“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 being looked after by Dr. Yvonne Slater, a Consultant Pediatric Gastroenterologist at the teaching hospital, who was delighted by the positive response the young teen had shown.
“We are all over the moon for Kai, who is the first child to undergo this treatment anywhere in the world.” Dr. Slater said.
“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.”
After the positive result, Kai’s mother commended the doctors and surgeons for their exceptional work.
“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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