Young patients with conditions that impact their bladder capacity or pressure may have poor kidney function, suffer with bladder leakage, and experience regular urine infections.
Our specialist urology team at Evelina London Children’s Hospital has used a life-changing bladder procedure called the Mitrofanoff to restore Abdullah Jumaa’s life to normal after a lifetime of urinary problems. Their critical treatment means the 6-year-old now enjoys previously impossible-to-do hobbies like football and riding his scooter.
Doctors at Abdullah’s home in Kuwait diagnosed bladder enlargement during his mother’s routine pregnancy scan, later finding a urinary tract obstruction that was causing his kidneys to function incorrectly.
Abdullah suffered many distressing symptoms as he grew up, including being unable to urinate and having frequent bladder infections. Because of these symptoms, he had surgery to create a urinary stoma, leading to urine leakage onto his clothes round the clock. His condition affected every aspect of his life, from not attending school to missing out on his favourite sport, football.
When he was five, the Kuwait Health Office referred him to Evelina London because it offers internationally acclaimed urology services, including the Mitrofanoff procedure.
Abdullah’s parents explain: “The choice was excellent due to the comprehensive care and attention provided to patients. The hospital is one of the best in care, with sophisticated equipment and a highly experienced medical team. The way they interact with patients, their families, the cleanliness is outstanding, and everyone is cooperative.”
Professor Paul Mitrofanoff invented the procedure to treat bladder dysfunction in 1976. Surgeons create a Mitrofanoff tube from the patient’s appendix or small intestine. They then make a hole in or close to the belly button and reroute urine from the bladder directly to the abdominal surface. From there, the child learns to empty their bladder through a narrow tube (catheter).
Consultant paediatric urologist Mr Pankaj Mishra and Evelina London’s specialist urology team recommended the Mitrofanoff, plus excision of bladder diverticulum and reimplantation of ureters.
Bladder diverticulum means the surgical removal (excision) of pouches on the bladder wall, designed to stop urine going back into Abdullah’s kidneys. Removing the diverticulum was done in the same procedure that created his Mitrofanoff channel. Reimplantation of ureters means fixing the tubes connecting the bladder to the kidneys.
At first, Abdullah and his parents feared surgery. However, through consultations and enquiries, they discovered that Mr Mishra is “one of the best doctors in his field”, which reassured them.
They and Abdullah also received counselling from Mr Mishra, our specialist bladder nurses, and play therapist about what to expect before surgery and the daily routine and care required post-operatively. After the procedure, Abdullah’s parents would need to help their son use the catheter every 2 to 3 hours until he adapted.
Abdullah’s parents say: “Our opinion changed to approval and a sense of psychological comfort and reassurance regarding the procedure and post-operative period. Mr Mishra explained his [Abdullah’s] condition, the procedure, the risks involved and the post-operative changes Abdullah would undergo. He always emphasised that Abdullah would require specialist care after the operation and provided him with that special care.”
The advantage for patients and their families at Evelina London is access to multispecialty units and teams in one place for complex operations. As Abdullah had a chronic kidney condition, our urology team worked with the nephrology team to ensure he had the best outcome. Also working jointly across the multidisciplinary teams were a play therapist, who looks after young patients like Abdullah, and an interpreter.
On the day of surgery, Abdullah received a general anaesthetic, and the 3 to 4 hour Mitrofanoff operation took place to enable Abdullah to empty his bladder. As well as the Mitranoff procedure, Mr Mishra removed (excised) the bladder’s outpouching (diverticulum) and fixed (re-implanted) the tubes on both sides (bilateral ureters). Sometimes, an additional procedure, a bladder augmentation to enlarge the bladder, is also performed. However, Abdullah’s bladder was of an adequate size, so it did not need enlarging.
Afterwards, during the 9 day recovery period in Evelina London, our paediatric specialist nurses and play therapists taught Abdullah and his parents how to empty his bladder. They had to wash their hands thoroughly, gently insert the catheter through the Mitrofanoff opening and into the bladder and drain the urine completely.
Abdullah’s parents add: “The international team was absolutely incredible throughout this challenging journey. They not only provided us with skilled interpreters but also offered invaluable emotional support. The team was consistently by our side, and their exceptional support on the day of the surgery and during the critical days that followed, including the weekend and the holiday, was truly remarkable.”
The urology team’s extensive preparation for the family helped them to adapt to the new daily routine following Abdullah’s surgery. Learning to empty his bladder every 3 hours through a catheter was particularly challenging.
Mr Mishra says: “The catheter can be removed once the bladder is empty. Intermittent self-catheterisation is a life and kidney-saving technique. It is a quick process and, when taught from a young age, children can adapt well and perform it independently. The role of specialist bladder nurses and play therapists are crucial for its success.”
With help from Evelina London’s urology team, including specialist nurses and play therapists, and his parents’ dedication, Abdullah has picked up the process quickly. He now leads a better life, playing football and riding his scooter without urine leaking into his clothes.
His mother adds: “I highly recommend that anyone with a similar condition to my son seek medical consultation at Evelina London Hospital without hesitation or fear. The entire medical team is highly competent and proficient in their field. I highly recommend the hospital.”