Preemie Matters – May 2013

In this issue of Preemie Matters: Virtual Summit Recap  • Families Blossoming  • Neurodevelopmental Outcomes Often Good for Extreme Preemies Receiving Active Care • An Inside Look at Life as a NICU Graduate • NICU Heroes Award

Virtual Summit Recap

Thanks to our presenters and participants who made the Coalition's 2013 Virtual Summit a success! We kicked off the week's events with a team at the Washington, DC March of Dimes March for Babies, followed by a networking reception with a keynote from Dr. Mitchell Goldstein and the debut of our new video. As we surpassed our 1,000th Facebook follower, we also hosted our first live Facebook chat, "How Providers Can Empower Parents," with guests Dr. Sue Hall, Keira Sorrells of Preemie Parent Alliance, and Laura Martin of Graham's Foundation. Strong participation from preemie parents made this a particularly successful feature of the Virtual Summit! If you missed it, visit the "Replay Live Chat" tab on our Facebook page. The Virtual Summit also included two webinars, "Collaborating with Legislators to Advocate for Prematurity" with Janine Lewis of the Illinois Maternal & Child Health Coalition and Rep. Robyn Gabel (D), Illinois - 18th District, and "Enhancing Safety and Outcomes with Evidence-Based Practices" with Dr. Alan Spitzer of Pediatrix, both now archived on our website. Stay tuned for info on future webinars and Facebook chats, as we continue the momentum from the Summit.

Families Blossoming

Families Blossoming provides coaching-based emotional support and resources for the parents of children born preterm and those with special needs, specializing in the post-NICU or post-diagnosis period. An independent business founded by preemie and special-needs mom Gigi Khonyongwa-Fernandez, Families Blossoming draws on the expertise from Gigi's experiences as a parent and advocate for her own child, as well as her professional background as an occupational therapist and healthcare project manager. In addition to coaching services, Families Blossoming also supports parents with a blog, a monthly e-newsletter, a Facebook page, and a forthcoming book, From Roller Coasters to Carousels: An Interactive Guide To Regaining and Maintaining A Sense of Calmness for the Preemie and Special Needs Parent.

Neurodevelopmental Outcomes Often Good for Extreme Preemies Receiving Active Care

A study published in the May 1 issue of the Journal of the American Medical Association (JAMA) looks at neurodevelopmental outcomes for extreme preemies, and the news is encouraging. The Swedish research team found that about three-quarters of infants born extremely prematurely and who received active care had mild or no neurodevelopmental disability at age 2.5 -- and that neurodevelopmental outcomes improved with each week of gestational age. They compared outcomes for 491 infants born before 27 weeks of gestation between 2004 and 2007, matching to singleton control infants. Lead researcher Dr. Frederik Sernius of Uppsala University says the results are potentially helpful for clinicians counseling families facing extremely preterm birth.

An Inside Look at Life as a NICU Graduate

A June 7 webinar, "Life Goes On: An Inside Look at Life as a NICU Graduate,", with Anne DeBattista, RN, MS, CPNP/CPMHS, PhD (c), will detail the latest statistics on the long-term consequences of prematurity and newborn illness, the programs delivering services to infants in hopes of minimizing long-term difficulties, and her perspective on the current state of early intervention services in the United States. The Dandle-LION hosted session will support NICU staff in understanding what lies ahead for preemies and their parents post-discharge, empowering them to give realistic guidance to parents before discharge, knowing that parental commitment and involvement has a huge impact on long-term outcomes. Nursing CE credits are available.

NICU Heroes Award

The NICU Heroes Award program- sponsored by Hand to Hold- recognizes NICU professionals for their compassion and dedication to improving outcomes for medically-fragile babies and their families. Parents and guardians of children who have been admitted to a neonatal intensive care unit are invited to nominate a favorite NICU Hero for this honor by May 27, 2013. Terms and conditions for the award program are available on the Hand to Hold website.


Information is reported as provided and does not necessarily represent the view of the National Healthy Mothers, Healthy Babies Coalition. A complete copy of HMHB’s disclaimer is available on our website.