Congenital anomalies such as spina bifida can result in a wide range of urologic disorders and necessitate comprehensive, long-term management. At The Children’s Hospital of Philadelphia, experienced, carefully coordinated follow-up to meet the complex needs of patients and their families is a hallmark of our care.
A new breakthrough at CHOP offers the option of prenatal surgery and dramatically improved outcomes to families faced with myelomeningocele (MMC), the most common and serious form of spina bifida. Yet, children who receive pre- or postnatal surgery may have bowel and bladder incontinence after birth. CHOP’s Spina Bifida Clinic is the nation’s first program to bring a multidisciplinary approach to long-term follow-up for these patients and has the greatest collective experience in their care.
Urologic follow-up begins at birth and consists of renal and bladder ultrasound, urinalysis, urine culture, and antibiotic prophylaxis. Children who are followed at CHOP return at 2 months of age for a comprehensive appointment that involves a video urodynamic study. Subsequent visits occur every six months until age 2, then annually. Periodic urodynamic testing and renal bladder ultrasounds are performed to make sure the kidneys are functioning properly and that bladder function has remained stable. For families returning home for postnatal care, the team does an initial consult and babies are referred to appropriate programs near their home.
Protocols based on extensive experience and prior outcomes ensure all patients receive standardized care, with finer details of follow-up tailored to each child’s condition. In addition to the core team of pediatricians, nurses, physical therapists, social workers, orthopaedic surgeons, urologists and neurosurgeons, children frequently require the services of other divisions within CHOP including Ophthalmology, Plastic Surgery, Endocrinology, Gastroenterology, General Surgery, Outpatient PT, Neuropsychology and Cardiology, as well as bracing and/or wheelchair fitting. The team arranges referrals for additional consultations with CHOP subspecialists as needed, and helps manage families’ expectations of their child’s ability to successfully toilet train from initial consultation.
Typical therapy involves clean intermittent catheterization (CIC), along with medication that helps the bladder store urine at low pressure. The team coordinates obtaining necessary supplies and instructs families — and, when older, children — on how to perform CIC. Orthopaedists and physical therapists assist patients who require bracing in working around issues that can affect their ability to self-catheterize.
The circle of care is continued through close communication with pediatricians. In many cases, our team manages follow-up well into adulthood — our oldest patients are now in their 40s. Nurses and social workers help patients and families navigate issues from accessing appropriate community services to enrolling in school, preparing school nurses to help with catheterization, if necessary.