Enhancing Parental Involvement with MMC Patients

CHOP has one of the longest standing programs to treat patients with myelomeningocele (MMC). Since 1995, more than 2000 families have been referred for evaluation in the Center for Fetal Diagnosis and Treatment. More than 300 in utero surgeries have been performed to treat these infants before birth, and since 2008 more than 400 infants with the diagnosis of MMC have been delivered in the Garbose Family Special Delivery Unit.

Parental involvement in care is essential for guaranteeing the best outcomes for our complicated patients. Recent years have also seen the expansion of care pathways to ensure consistency in care for patient populations. This creates predictability for the clinical teams, but none of this is directed toward families, who often remain in the dark about what to expect.

To address this, clinicians from Neurosurgery and Neonatology developed a coordinated effort to enhance parental understanding of care during the admission of their newborn infants with MMC. The team began by critically reviewing the MMC care pathway (one of the first pathways for neonates at CHOP) and determined which aspects were important for families to understand, particularly as it relates to length of admission and timing of discharge.

A “Care Map” was then developed that is now given to each family of an infant with MMC. This tool can now be used by the multiple involved services to show where they are contributing to the infant’s care and how certain aspects of the clinical course may impact discharge. Surveys from families were obtained before and after this intervention and showed that families report improved satisfaction and quality of communication with care teams.

In addition to this Care Map, we are thrilled that Katie Schmidt, MSN, CRNP, has transitioned to a newly created role following spina bifida patients from prenatal diagnosis through their stay in the Harriet and Ronald Lassin Newborn/Infant Intensive Care Unit (N/IICU), then throughout their lifespan, which will hopefully create a familiar and consistent face for families. She will work closely with our hospital’s Spina Bifida Program and other systems in place to analyze, support and continue to improve the care provided to this unique patient population. Katie will also work closely with the surgical team in the N/IICU for the care of these patients and establish relationships with families through prenatal diagnosis, N/IICU admission, and follow-up care as outpatients. Responsibilities will also include participation in research as well as study coordination for diagnosis-specific trials. Katie will divide her time between her new role and will continue to work as a surgical nurse practitioner in the N/IICU.