Parents of premature babies from around the world are finding comfort and understanding online at shareyourstory.org. The March of Dimes ShareYourStory online community has re-launched with new features to help parents with a sick newborn move through difficult emotions, cope with loss and grief, and begin to heal.
“ShareYourStory,” is an interactive, online community where families who have a sick baby can receive support and information from others who understand the challenges and uncertainties of complicated pregnancy, the Neonatal Intensive Care Unit (NICU) experience or the loss of a newborn,” said Scott D. Berns, MD, MPH, FAAP, March of Dimes senior vice president and deputy medical director.
“ShareYourStory is home to all of us who have not had that picture-perfect pregnancy, who struggle with little ones in the Neonatal Intensive Care Unit, or forever hold their child in their heart. It is where I found hope for the future,” said community member Lauren Wilson, from Hawaii.
New technology built into the site enables parents to upload pictures and video that demonstrates their babies’ progress and development. The addition of new profile avatars makes it easier to find friends and other members based on shared pregnancy and birth experiences.
The site also connects easily with social media platforms such as Facebook, Twitter and Pinterest so that users can share updates with a wider circle of friends and family. The “Get Local” section provides an opportunity to learn about March of Dimes local events, or meet in person with families, or March of Dimes staff in the local area. ShareYourStory is monitored seven days a week by March of Dimes volunteer parents who are veteran contributors to the site.
“The enhanced features foster an even deeper sense of community and connection between parents who have gone through similar challenging experiences. ShareYourStory is there for each and every one of these families,” said Dr. Berns, who announced the site’s enhanced features during the 9th annual March of Dimes ShareUnion reunion this weekend in Washington, D.C. The two-and-half-day event brings together members of the March of Dimes “ShareYourStory” community. The event provides a forum and opportunity for “virtual” friends to meet one another in person.
This year’s ShareUnion theme was Pay It Forward. Participants learned how they can use their powerful experiences, stories of love and loss, and their connection to the shareyourstory.org community to help others. Other sessions focused on moving through difficult emotions, and the act of writing as a method of healing.
In 2013, the March of Dimes celebrates its 75th Anniversary and its ongoing work to help babies get a healthy start in life. Early research led to the Salk and Sabin polio vaccines that all babies still receive. Other breakthroughs include new treatments for premature infants and children with birth defects. About 4 million babies are born each year in the United States, and all have benefitted from March of Dimes lifesaving research and education.