A boy with occult spina bifida underwent nine surgeries at another hospital but still experienced incontinence!

Xiao Shuo, a 10-year-old boy from Henan, was born with a 2mm diameter hole in his lumbosacral region, accompanied by scoliosis and difficulty urinating, with urine dripping intermittently and constipation, sometimes only defecating once every two days.

Initially, his family did not take it seriously. However, as Xiao Shuo grew older, his scoliosis became more pronounced, and many sinus hairs grew around the hole in his lumbosacral region, prompting his family to seek medical advice. They visited several hospitals in Zhengzhou without success until Xiao Shuo was three years old, when they took him to a major hospital in Beijing for treatment.

The diagnosis at the Beijing hospital included sacral sinus, scoliosis, left foot inversion deformity, spinal dysraphism, sacral canal cyst, congenital spina bifida, tethered cord syndrome, and dermal sinus cyst. He underwent “scoliosis correction surgery” and “left foot deformity correction surgery,” but these did not significantly improve his incontinence.

At seven years old, Xiao Shuo returned to the Beijing hospital for “sacral sinus excision” and “tethered cord release” surgeries, which unfortunately did not resolve his incontinence issue and even worsened it compared to before.

Two years later, after an external urodynamic study revealed “neurogenic bladder” and reflux in the left ureter due to incontinence, Xiao Shuo developed chills and fever. The doctors administered anti-inflammatory treatment and placed a urinary catheter inside him to prevent his condition from worsening.

By the end of May this year, Xiao Shuo came to our hospital for further treatment of his incontinence. Visible on his back was a deep scar, about 30cm long, from previous surgeries, and his left calf muscle was significantly atrophied.

After auxiliary examinations, it was found that Xiao Shuo’s bladder compliance was poor, and his anal sphincter was relaxed. Ultrasound of the urinary system showed changes in the bladder wall, and lumbar MRI revealed multiple cysts in the sacrococcygeal spinal canal. After comprehensive examination results, he was diagnosed with neurogenic bladder and recommended for the artificial somatic-autonomic reflex pathway surgery.

Xiao Shuo’s father mentioned that over the past ten years, Xiao Shuo had undergone a total of nine surgeries, with this being the tenth, hoping it would finally resolve his incontinence and eliminate the need for a urinary catheter. On June 12th at 9:30 AM, Xiao Shuo was taken to the operating room.

Due to seeking treatments everywhere, Xiao Shuo, who should have been in third grade, had to interrupt his schooling. Since being admitted to the hospital at the end of May, he has been there for nearly half a month. From the recovery days post-surgery, Xiao Shuo has shown no adverse reactions and is expected to be discharged in a few days. His father said that if Xiao Shuo could live without a urinary catheter and be like normal people, it would be the best tenth birthday gift for him.