Mary always knew she would work in healthcare. She graduated from Georgia Southern University with a degree in child and family development with an emphasis in child life, completed her internship at Children’s National, and became certified in 2011. She started the child life department at Hoops Family Children’s Hospital in Huntington, West Virginia, which was at the time a newly accredited children’s hospital within a hospital. She enjoyed the challenge and responsibility of being a one-person program, educating staff and healthcare providers at the local medical and nursing schools, but her goal was to find a position that provided greater advocacy potential within the child life community and beyond. In pursuit of this goal, she received a master's at the University of Georgia’s College of Public Health and a graduate certificate in disability studies through UGA Institute of Human Development and Disability.
In January 2017, Mary started working with the CDC’s Zika Virus Emergency Response on the Pregnancy and Birth Defects Task Force as an ORISE Research Fellow and became a P3S Corporation contractor shortly thereafter. When the CDC deactivated its response to Zika virus, May became a part of the Zika Transition Unit hosted within CDC’s National Center for Birth Defects and Developmental Disabilities. Although Mary’s role with the CDC is as a health scientist, she brings her child life background and perspective to her public health responsibilities. When she learned the CDC had been invited to support the US Virgin Island’s Zika (USVI) health clinic, she cited the AAP guidelines as part of her request to have two child life specialists be part of the team. The children to be screened at the clinic, who were all under the age of two, would see multiple specialists during their visits and undergo various exams and tests. Therefore, child life would be a critical component of a successful health brigade.
After Mary petitioned and received permission for child life support, she contacted ACLP for help in locating a qualified candidate to accompany her. With the assistance of Meagan Roloff, ACLP’s Director of Partnerships, the perfect candidate: Ashley Kilpatrick, a child life specialist with experience working with neonates and an active volunteer with Operation Smile. Ashley is a certified infant massage instructor. For the past five years, Ashley has worked on the pediatric ICU, the in-patient pediatric unit, and neonatal ICU at Huntsville Hospital for Women and Children, which is a 45-bed unit and the only level 3 hospital in northern Alabama.
Finding Ashley was just one of many decisions that happened before the clinic was operational. The CDC’s US Zika Pregnancy and Infant Registry (USZPIR) is used to track the pregnancy of mothers who tested positive for Zika virus during pregnancy and their infants. Infants for the Health Brigade were identified by collaborating with the USVI Department of Health and by accessing the registry. Radio ads were aired and flyers were distributed in case a mother had not received healthcare locally. Mary spent almost three months on St. Thomas and St. Croix conducting public health surveillance and performing chart abstraction. She reviewed the birth records of all potential patients and made sure relevant information was noted in their charts.
With Meagan’s support, Mary and Ashley created a child life supply list and received donations from ACLP members and Ashley’s hospital, Huntsville Hospital for Women and Children. Mary and Ashley each traveled with a suitcase full of items like soothing aquariums, balls, light and manipulative toys, bubbles, little drum sets, and teaching dolls. All unused supplies were donated to the US Virgin Islands Department of Public Health.
Local healthcare providers were engaged and encouraged to participate in the Health Brigade for sustainability and continuity of care. The health brigade included 14 specialists with expertise in neurology, audiology, ophthalmology, and developmental pediatrics because congenital Zika infection may cause microcephaly, ocular abnormalities, neurological issues, and other birth defects (Delaney et al., 2018; Honein et al., 2017). The clinic consisted of two intake stations where the ninety-one patients were measured for height, weight, and head circumference; four neurology stations; three ophthalmology stations; one audiology station; one developmental pediatrician station; and two exit stations.
Mary and Ashley’s child life support began before the clinic opened its doors. They took photos of the physicians and their equipment and created an electronic prep book. The equipment for exams was unfamiliar to most of the families and patients, and Mary and Ashley used the book and teaching dolls at the intake station to educate families about what to expect from upcoming procedures. Entire families often accompanied a patient to the clinic, which meant siblings needed attention, education, and care as well. Thanks to the donations Mary and Ashley received, siblings had sticker books and coloring sheets to occupy them during their brother or sister’s appointment.
In addition to education, Mary and Ashley provided procedural support. All patients needed to have eye dilation, which can be traumatic for infants the required nine drops per eye. One distraction technique involved giving children two small balls they could hold during dilation to keep their hands and minds busy. Mary and Ashley also suggested comfort positions and facilitated transitions between stations. An example was using bubbles to lead a toddler from the neurologist to the ophthalmologist, which created a moment of play for the child as well as the opportunity for the neurologist to observe the child’s gait. Most patients required around two hours to complete the entire screening process. Child life services increased efficiency, quality of care, and flow and reduced anxiety and trauma. Ninety-seven percent of families who answered the exit survey said child life improved their experience.
The Health Brigade was a successful, collaborative public health outreach, and child life was an invaluable part of its success. Mary believes this Health Brigade was the first time child life services have been used in this type of a response. Child life services were well received by specialists and local healthcare providers. Mary and Ashley think their child life skills were respected and utilized appropriately by the healthcare team and hope child life will continue to have a place in public health.
For more information about the US Zika Pregnancy and Infant Registry, visit the CDC website: https://www.cdc.gov/pregnancy/Zika/research/registry.html.
Delaney, A., Mai, C., Smoots, A., Cragan, J., Ellington, S., Langlois, P., . . . Honein, M. A. (2018). Population-Based Surveillance of Birth Defects Potentially Related to Zika Virus Infection - 15 States and U.S. Territories, 2016. MMWR Morb Mortal Wkly Rep, 67(3), 91-96. doi:10.15585/mmwr.mm6703a2
Honein, M. A., Dawson, A. L., Petersen, E. E., Jones, A. M., Lee, E. H., Yazdy, M. M., . . . Collaboration, U. S. Z. P. R. (2017). Birth Defects Among Fetuses and Infants of US Women With Evidence of Possible Zika Virus Infection During Pregnancy. JAMA, 317(1), 59-68. doi:10.1001/jama.2016.19006
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