The Ashley Rose Pitek Scholarship has provided significant resources to Lori Howell, MS, RN, a student in the Doctor of Nursing Practice (DNP) Program as she conducts research on spina bifida, in conjunction with The Children’s Hospital of Philadelphia (CHOP). At CHOP, Howell is executive director of the Center for Fetal Diagnosis and Treatment and director of the Surgery Advanced Practice Nurse Program. “Having two outstanding organizations [CHOP and the College of Nursing] take an interest meant a lot to us,” noted Ray and Linda Pitek, parents of Ashley Rose, their daughter who died of complications of spina bifida. Ashley Rose was the inspiration for the charitable organization, founded by the Piteks, that donated funds for the scholarship.
Howell was a perfect fit for their mission. “My entire career has focused on children with birth defects from gestation to graduation regardless of the setting: prenatal diagnosis and treatment, neonatal and pediatric critical care, surgery and care in the home,” Howell explains.
In the DNP program, each student completes a scholarly project. Howell, moved by the story of Ashley Rose, has selected the following topic: “Does an Educational DVD About Spina Bifida Care in the NICU Provided to Expectant Parents Improve Their Understanding?” She is gathering an inter-professional group, including CHOP experts in neurosurgery, neonatology, urology and orthopedics who will participate in the project, as well as members of the clinical care team from the hospital’s Neonatal ICU and Spina Bifida clinic. Howell also has discussed her project with the executive and education directors for the Spina Bifida Association of America (SBAA) and received “an enthusiastic response.” They hope to incorporate the DVD on SBAA’s new website. Howell sees the opportunity for a national and international reach. She plans to translate the DVD into Spanish since there is a higher incidence of spina bifida in the Hispanic population.
With the educational DVD, Howell aims to increase parental understanding of the care their child will receive while in the NICU and immediately after discharge. She also wants to decrease parental anxiety and stress, decrease the length of stay in the NICU, and encourage pre-selecting a health-care facility for cesarean delivery and neonatal spina bifida repair. Pre-selection avoids transport separation for mother and baby and speeds surgical repair to minimize the likelihood of infection. Given the complexity of spina bifida, Howell notes that parental preparation in the prenatal period may result in better planning for the child’s ongoing care.
“We are delighted with the work Lori is doing,” the Piteks observed. Howell notes the impact of the couple’s gift in memory of Ashley Rose, saying, “It takes the courage and support of families like the Piteks to create a force that can change the lives of these children. There is much work to be done, and their support provides a pathway to do so.”