Seven-year-old Madi loves being active, whether that means dancing, doing gymnastics or riding her bike. Born with spina bifida, she doesn’t let the diagnosis slow her down — but the chronic urinary incontinence it can cause was disruptive and stressful. Known as neurogenic bladder, this condition occurs when the nerves to the bladder and urethral sphincter do not work properly and can lead to urinary retention or persistent urinary leakage.
Initially, Madi’s doctors in Louisiana advised her parents to take a wait-and-see approach to her incontinence. But when she turned five, they decided it was time to explore their options for longer-term treatment. “We didn’t want to limit her as she got older,” says her mom.
On the same page
Although their Louisiana specialists recommended reconstructive bladder surgery, which is permanent solution, the family was hesitant. “That’s a choice we felt she should make about her own body as an adult,” her mother explains. “We wanted to try less-drastic approaches first.” A simple internet search for top-ranked urology specialists led them to Dr. Erin McNamara, a pediatric urologist in the Department of Urology at Boston Children’s Hospital.
“Right away, we knew that Dr. McNamara was on our page,” says Madi’s mom. “She gave us a whole list of options we could try.” Madi and her parents worked their way through the nonsurgical approaches, which ranged from medication to biofeedback to botulinum injections. When those measures weren’t successful, Dr. McNamara explained that it might be time to consider an artificial urinary sphincter (AUS).
An AUS is a surgically implanted device that wraps around the bladder neck (the muscles that connect the bladder to the urethra) and increases the resistance so urine is unable to leak out of the bladder. It helps treat urinary incontinence by allowing the patient to control the flow of urine through the bladder neck with a pump inserted under the skin.
A pleasant surprise
Even though the AUS placement would require surgery, Madi’s parents liked that it was a flexible solution that she could choose to keep or change as she got older. What’s more, Dr. McNamara put the family in touch with a woman who’d had an AUS since she was a child. “She told us how it really allowed her to do what she wanted to do in life,” says Madi’s mother. “That really helped answer a lot of our questions and ease our concerns.”
But when the family arrived in Boston for surgery, they were in for a surprise. In reviewing Madi’s case, Dr. McNamara and her colleagues decided that she would be a good candidate for robot-assisted AUS placement. This approach allows for better precision and placement of the AUS and less abdominal scarring than traditional surgery. “They explained that the robot could reduce a lot of the risks associated with AUS implantation,” says her mom.
Still, Madi and her parents were pleasantly surprised when they learned that the surgical team had been able to perform the entire procedure with robotic guidance — making the little girl the first child in the world to undergo a completely robotic pediatric AUS implantation using only three small laparoscopic port incisions. “When we realized that the scarring was even more minimal than we imagined, we were ecstatic,” says her mother.
Nothing can stop her
A few months after the procedure, Madi and her family are encouraged by the results. Today, the 7-year-old can make it through an hour of dance class without worrying about having an accident. Her relationship with her mom has also improved — with bathroom trips now under her control, there’s less prompting to make sure she stays dry. And while the family still returns to Boston for visits with Dr. McNamara, as well as Dr. Nedda Hobbs and Fiona Paul in the Spina Bifida and Spinal Cord Conditions Center, her more routine care can still be done at home.
“She has more freedom to be active, and more freedom to be herself,” says her mom. “Madi has never let anything hold her back — and now nothing ever will.”