Jasmine is 18 years old, and loves making art. She and her mom, Monica, work as camp counselors during the summer, so they spend a lot of time outside. This could have been a cause for anxiety, because Jasmine spent much of her childhood struggling with persistent urinary tract infections (UTIs), urinary retention, and constipation. 

But now, thanks to treatment at the Neuromodulation Bowel and Urologic Alliance (NEBULA) Program at Children’s Hospital of Philadelphia (CHOP), Jasmine has discovered newfound confidence and freedom. NEBULA is a multidisciplinary clinic that treats complex bowel and bladder disorders like Jasmine’s. Among their groundbreaking therapies is sacral neuromodulation, in which a device is implanted inside the body to stimulate the sacral nerves. This has shown great success in helping control bladder and bowel activity. For Jasmine, the implant brought instant relief.

Early struggles lead to a rare diagnosis 

Monica adopted Jasmine when she was four and a half years old. From that early age she had difficulty with constipation and an inability to fully empty her bladder. “She was a ‘holder,’” Monica says. Taking psyllium helped the constipation, but the difficulty she had emptying her bladder caused Jasmine to get frequent UTIs. 

During early treatment at the CHOP’s DOVE Center for Voiding and Bladder Function, Jasmine would play games that incorporated biofeedback to help her learn to control her pelvic floor muscles and empty her bladder more effectively. But the UTIs persisted and, eventually, became resistant to prescribed antibiotics.  

“You don’t know how many people told me ‘Oh, she’ll be all right,’” Monica says. “Now, I don’t have any letters behind my name, but as a parent, I knew something wasn't right.”  

At age 16 Jasmine was diagnosed with Fowler’s syndrome, a rare condition in females that keeps the urethral sphincter from fully relaxing, causing them to retain urine and preventing the bladder from emptying fully. 

“Jasmine was embarrassed,” Monica says. “She wouldn’t go out, she would hold it in so she didn’t have to pee somewhere public.”  

The promise of an implant to improve bladder function

In 2023, Amanda K. Berry, PhD, MSN, CPNP, recommended that Monica consider sacral neuromodulation as a longer-term solution for Jasmine’s urinary issues. At that point, Jasmine transitioned into the NEBULA Program to be evaluated as a candidate for sacral nerve stimulator placement.

Sacral neuromodulation is a medical treatment for children who have trouble with bladder control and have not had success with medication or special exercises. A small device is placed under the skin near your child's lower back that sends signals to the nerves that control the bladder. These signals help their bladder function more effectively. Doctors implant the device in two steps – the first is temporary, to test if the device helps your child and to ensure their body accepts the implant. If the first phase is successful, a permanent device is implanted. Sacral neuromodulation can help kids feel more in control and relieve anxiety around going to the bathroom.

Jasmine was evaluated by the NEBULA team in January 2024 and had the first surgery in February 2024, when she was 17. The device provided immediate relief. NEBULA Program urologist Jason Van Batavia, MD, MSTR, then implanted the permanent device in March 2024. 

Jasmine carries an external battery pack that powers the implant. She can do most everything she normally would, although doctors recommend avoiding vigorous physical activity or heavy lifting that could dislodge or damage the implant.

Besides going to the bathroom more often, Jasmine doesn’t feel as if her lifestyle has changed. “The device already feels like a part of me,” she says. 

Monica calls the neuromodulation implant a “godsend.” “Jasmine has come a long way, and I attribute that to CHOP and the NEBULA clinic,” Monica says. “Her life is very much better with the implant than without it.” 

What advice does Monica have for parents whose child may face similar bowel or bladder issues? “It’s worth trying if you’ve tried everything else,” Monica says. “You take bodily functions for granted, but it’s not so easy for everybody. If I can help even one person, one family, I definitely want the story out there.”