By Joy Kerr, DNP, CPNP-PC, CRNFA, Urology Nurse Practitioner
Children with spina bifida need complex care across their lifespan. In Urology, we have always cared for our patients from a urologic perspective, focusing on neurogenic bladder, with yearly renal bladder ultrasound studies, video urodynamic studies, urinary tract infection diagnosis and treatment, kidney and bladder stone diagnosis and treatment, and clean intermittent catheterization training.
In 2014, we took a more active role in neurogenic bowel management. Due to prolonged transit times that lead to constipated type stools and poor anal sphincter tone that leads to unexpected accidents, these children and families spend an hour each night on bowel management. Soiling accidents have a more negative impact on patients and families than urine accidents.
Our busy Spina Bifida Clinic team has always started bowel management at the time of potty training, but as children were growing, independence with bowel management was a struggle with the cone enema system. Parents reported that they were unable to get a good seal holding the cone in with two hands which led to a messy bathroom and a frustrated child and parents. There are other options for bowel management that use a pump system and a balloon catheter which allows patients to receive consistent irrigation with very little leakage. Interested providers were trained to teach patients and families this new system, and the Division of Urology supported training of our team members.
A transanal irrigation system empties the bowel by introducing water into the bowel using a rectal catheter and a pump system. It has been a game-changer for many patients and families because parents are now able to administer enemas while their child is sitting on the toilet. Patients and families report less leakage of fluid during the irrigation because they are able to get a better seal.
Some patients are still reliant on family members to help with placement of the catheter, but we work at teaching our patients how to set up the system and how to pump in the fluid on their own (with some supervision). Over time, most of our patients can become independent with this system. Many of our patients on Peristeen are able to go to an every other night bowel program which leads to more free time for family and friends a few evenings each week. Transanal irrigation does not work for every child, but almost all who have tried it find it to be a good fit for them. Some adolescents are skeptical at first, but when they find that they can be independent, they feel that this improves their quality of life.
In 2017, we collaborated with our Occupational Therapy (OT) team in trying to help patients become more independent with bowel management. After meeting with a patient who used the cone enema, we knew there had to be a better way.
The SPRINT Program at CHOP is a bi-annual call for innovative healthcare ideas, concepts, or projects at any stage of development into real world applications. The SPRINT Program is helping innovators receive the direction they need to accelerate innovative ideas, concepts, and projects. CHOP Occupational Therapist Michelle Hsia, MS, OTR/L, and I (Joy Kerr, DNP, CPNP) partnered with Attending Pediatric Urologist Jason Van Batavia, MD, to apply to the SPRINT Program for a novel cone assist device. Out of the 77 projects that applied to SPRINT, ours was one of the three projects chosen.
The SPRINT Program has assisted us in developing our first prototypes and procuring a provisional patent for two devices. Last summer we did a small trial with 10 patients and the overall response was positive. Parents told us that this device helped their child become independent in using the cone enema system. A few families told us that this was the first time they felt hopeful that their child could do bowel management on their own.
We have a second iteration of the prototype in the works with hopes to trial it on the same 10 patients this summer. We cannot give more details at this time because we are still in the refining process for the final product. Once we have a device that is clearly ready to use, we would like to open this up to other patients with spina bifida to train them how to use it and help them become more independent in bowel management. We will update you when our final product is ready for your patients to use.