NEW YORK PREMATURE INFANT HEALTH NETWORK. Association of Perinatal Networks Perinatal Network of Monroe County. March 25, 2010 Rochester, New York

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1 NEW YORK PREMATURE INFANT HEALTH NETWORK Association of Perinatal Networks Perinatal Network of Monroe County March 25, 2010 Rochester, New York

2 IN ATTENDENCE Cindy Ekhert OB/GYN, Unity Rosemary Bonaccorso Monroe County WIC Nina Randazza Monroe Plan for Health Care Kathy Sugrue, RN, BSN Nurse Family Partnership Sara Beth King, RN, BSN Nurse Family Partnership Denise Doser, RN, BSN Nurse Family Partnership Shawnna Rose-Davidson Parent of Preemie Carla Levant SWK at Golisano Children s Hospital Carla_levant@urmc.rochester.edu Patti Milburn Parent of Preemie Darcy Dreyer March of Dimes ddreyer@marchofdimes.com Mike Burke March of Dimes mburke@marchofdimes.com Kathleen M. Rog SOCH-NICU Chelsea Moriarty SOCH-NICU Alice McAdam Hillside Kelly Wicker-Yount Healthy Start kwickeryount@unityhealth.org Kristy Crough Strong Memorial Hospital Kristie_crough@urmc.rochester.edu Eileen Barry YWCA ebarry@ywcarochester.org Jacqueline Procope-Isaacs Perinatal Network of Monroe County jisaacs@pnmc-hsr.org Sherita Bullock Perinatal Network of Monroe County sbullock@pnmc-hsr.org Erin White Association of Perinatal Networks, Program Coordinator ewhite@associationofperinatalnetworks.org MEETING NOTES Below is an overview of key messages and comments during the meeting. o APN and New York State PIHN Presentation - Erin White, APN Program Coordinator The Association of Perinatal Networks (APN) is an umbrella organization to the 18 regional perinatal networks. The APN focuses its efforts on statewide issues and supporting the week of each of the 18 individual Networks. The local Networks strive to make positive change in health outcomes for women, infants and families. The Networks cover different areas of the state and programs vary, however the ultimate goal of improving maternal-child health is the same for all Networks. The NYS Premature Infant Health Network (PIHN) began in Meetings were held in both Albany and New York City. In 2010, the PIHN transitioned to the Association of Perinatal Networks (APN). Over the next year, APN will hold 20 PIHN meetings throughout New York State. The PIHN brings together community and health organizations, healthcare providers and parents to increase quality healthcare access and awareness around premature infant issues faced both in the NICU and when care begins at home. 2

3 The APN wants to be a sounding board to discuss issues of prematurity, we want to compare and contrast available services for families and caregivers of premature infants and we want to bring the issue of prematurity to the forefront in NYS. PIHN Objectives: Put a spotlight on the ongoing unique health and developmental issues premature infants and their caregivers face. Increase health care access for the ongoing care of premature infants. Raise awareness and create better standards for the ongoing care and needs of premature infants and their families/caregivers PIHN Action Steps: Assess the needs of families with premature infants and children. Identify the availability (or lack) of medical providers and other services within local communities. Determine how NYS can better assist providers in serving families with premature infants and children. Create a NYS agenda to deal with issues that are faced by parents and caregivers of premature infants. o Roundtable Discussion on Issues/Needs NICU Experience: Parents that appear to have resources, partner support and family support are put on the bottom of the list in the NICU for additional support from NICU staff. There are resource disparities because of different needs. Parents that do not qualify for extra services (through CompassionNet for example) see the families that are receiving all the extra services in the NICU. If a preemie leaves the hospital healthy, case management stops and no follow-up is conducted. No celebration in the NICU and when preemie is discharged from NICU. Family leave does not help NICU moms: Leave is only 6 weeks. Do you take your leave to be with your baby in the NICU or wait and take leave when your baby comes home from the hospital? Difficult to balance NICU visits, work, family life, caring for other children, Parents need to learn to advocate for and be the voice for their preemies. It is important for families to have a sense of hope. Parent(s) can experience separation anxiety when you have to leave your baby in the NICU and can t be there all of the time. Difficult when mother is in one hospital and baby is at another. In these cases, mothers cannot breastfeed at the beginning. Parent(s) not prepared for events that happen in a NICU: Surgeries, deaths, 3

4 A mentoring program and services such as a parent phone tree would be helpful in navigating the NICU as well as after discharge. HIPAA is a barrier for parents to connect in the NICU. Parents told not to ask questions about other parents and babies, don t share what you hear with others, Daily report cards reporting on Baby s day would be helpful. Particular for those parents that are unable to be at the NICU on a regular basis. Support For families: Mothers can experience post traumatic stress disorder after a premature birth and caring for a premature infant both in the hospital and at home. Constantly worrying/waiting for next bad thing to happen to your baby. Mother can feel a sense of guilt because they did not carry their baby to fullterm. A network where parents could connect with other parents would be useful. Pediatricians are a useful tool for parents to learn how to advocate for their child. Provide counseling services to mother of preemies. Mothers can experience survivor s guilt because they know of other mothers that have lost their babies. Resources for young, first-time mothers and support for single mothers would be helpful. Parents of preemies can share experiences at: Care At Home: Medically sensitive daycare/babysitters are difficult to find. Caring for a preemie can be a financial strain. For example, some preemies need compound medications. In Rochester, there are only 2 places that provide compound med s. Neither place accepted any form of insurance. Mother and baby are isolated. Must keep baby at home to avoid exposure to germs. Unable to share babies with others, unable to get photos of your baby, The cost of RSV shots is high/not fully covered. Parents need to be made aware of and utilize Early Intervention services. There seems to be a high turnover rate with Early Intervention coordinators Parent(s) need to follow-up themselves to ensure services are provided. Dispensing medications at home can be scary and confusing. Little or no transportation options to get to doctor s appoints: Cannot bring preemie on bus because of exposure to germs; Cabs are expensive; Medicaid does not pay for transportation. 4

5 o Next Steps Conduct Premature Infant Health Network meetings throughout NYS and facilitate sharing and support for caregivers and parents of premature infants. Communicate resources and findings to meeting attendees. Use information gathered from meetings to create a report for prematurity issues throughout NYS. 5