AUSTIN, Texas (February 14, 2013) – National NICU parent support nonprofit Hand to Hold has announced the launch of its new NICU Resource Library for hospitals. The online resource library, which offers educational resources for parents with a baby in the neonatal intensive care unit, is designed to complement and extend hospitals’ efforts to provide Family-Centered Care initiatives that recognize families as integral and coequal parts of the health care team. An editorial board of neonatologists, social workers, NICU graduate parents, lactation consultants and other specialists collaborated with Hand to Hold to ensure resources followed Centers for Disease Control’s Health Literacy Standards and delivered timely, relevant and easy to understand information to help parents navigate their NICU stay and prepare to meet the needs of their medically fragile child following discharge.
“As a neonatologist for more than 20 years, I have witnessed first-hand the positive impact NICU parent education and support programs can make in families’ lives…Navigating the NICU journey is never easy, and the challenges do not end at hospital discharge,” said Dr. Sue Hall, author of For the Love of Babies and neonatologist with Pediatrix Medical Group of Kansas. “Hand to Hold can help families, whose precious babies need a NICU’s special care, realize the best outcomes for the child and indeed their whole family.”
A baby may require intensive care in a hospital NICU for many different reasons, including birth defects or low birth weight. The most common need for a baby to be admitted to the NICU is preterm birth, when babies are born prior to 37 weeks gestation. One in 8 babies in the U.S. is affected by preterm birth which is one of the leading causes of death and disability.
An emphasis on support and education for NICU families cannot come soon enough. Two recent studies published in the British Medical Journal predict the number of children and adults with disabilities caused by premature birth will rise in the coming years and will increase demand for health, educational and social services. Once more, the National Perinatal Association’s recent publication of Multidisciplinary Guidelines for Care of Late Preterm Infants points to the need for improved practices to treat late preterm infants, babies born between 34 and 36 weeks gestation, a growing area of neonatology.
“No matter the length of a NICU stay, parents can face tremendous emotional, physical, financial and psychological stressors,” said Kelli Kelley, Founder and Executive Director of Hand to Hold. “Hand to Hold’s NICU Resource Library is designed to fill an existing gap in our current healthcare system to provide parents with the tools they need to become informed advocates for their baby throughout the NICU stay and to meet the needs of their medically fragile child post discharge.”
The NICU Resource Library launch coincides with Hand to Hold’s spring awareness campaign For the Love of Babies, which is designed to help the charity expand the education available to NICU parents in hospitals across the country. Parents who participate by telling their story have the option to gift this new library to their hospital’s NICU. Visit www.handtohold.org/NICULibrary to learn more about the library.
“Most first-time parents don’t count surgeries before teeth, or speak like they’ve been through years of medical school,” said Melissa Droegemueller, mother of Addie who was born at 26 weeks weighing 1 lb 8 oz and was selected as Hand to Hold’s Preemie Power Photo and Essay Contest winner in 2012. “The NICU can be a very lonely and scary journey, but Hand to Hold’s NICU Resource Library and peer to peer support program will ensure parents know they are not alone!”
Hand to Hold, a nonprofit organization serving NICU families nationwide, provides comprehensive navigation resources and support programs to parents of preemies, babies born with special health care needs and those who have experienced a loss due to these or other complications. Hand to Hold’s core service is matching experienced peer mentors with new parents who have had a child in the NICU to offer support and equipping parents with education they need to care for their baby, family and themselves. Hand to Hold was the 2012 recipient of the Becky Hatfield Family Support Award, given by the National Perinatal Association. All services are offered without charge. For more information, visit www.handtohold.org or call toll-free 855-H2H-NICU.