Share Your Story: an online community for NICU families
Prematurity is the leading killer of America's newborns. Those who survive often have lifelong health problems, including cerebral palsy, mental retardation, chronic lung disease, blindness and hearing loss.
Families who have babies born prematurely or with other birth complications face the complexities of the NICU and the long term impacts on their daily lives. First hospital bound, then home bound for years (to avoid exposure to viruses that can be life threatening for preemies), they have a huge need to be connected to other parents.
The March of Dimes is leading the campaign to reduce premature birth by supporting research and educating the public and health care providers. We also know and understand how frightening and confusing the NICU experience can be for families. Share Your Story addresses the needs of families by providing a forum for them to turn to for emotional and informational support.
There are now hundreds of stories on Share Your Story that show people connecting with people who understand and support them can make a critical difference. For example, right now a very active part of the site is "Pregnant? On Bed rest? Trying Again?" where a number of moms who have had previous premature births are sharing their current bed rest experience. It is an immeasurable relief to be able to connect with other moms while confined at home, especially in the winter, when many NICU parents are home bound so their infants aren’t exposed to viruses, which are especially dangerous to these special babies.
Even more important are the moments when the community wraps their cyber-arms around families under intense stress in the NICU, or who have lost babies. A number of members credit Share Your Story with helping them through these difficult times. And then there are the celebrations – babies going home, milestones passed, birthday celebrations of these amazing little fighters.
Share Your Story is maintained through the general operating budget of the March of Dimes. The community has in turn provided monetary value back to the organization. Last year, half of the site’s participants took part in the March of Dimes largest fundraiser (WalkAmerica), and collectively raised over $1.5 million.
We have overcome most of our potential obstacles and are working hardest now on trying to reach our target audience. How do we reach more parents in hospital NICUs? How do we reach people who may not ordinarily be online but who might benefit from being part of the community? How do we steward the volunteer community leadership to allow the community to scale out and self sustain?
All posts are read by March of Dimes staff for red-flags like health education questions and mental distress. These duties are currently split among March of Dimes staff with particular areas of expertise and one community host. With almost 1,000 new registrants a month and 10,000 posts per month, we would like to hire two part time employees devoted to the site.
The visitors to Share Your Story are parents looking for other parents who are dealing with the birth of a premature baby, the crisis of a child with birth defects, or the death of an infant. The site makes it easy to get in touch with others and instantly feel part of a community.
Share Your Story
Last year my niece used this website when she was sent to bed for four weeks during her pregnancy. It connected her with other women who had the same experience who were able to comfort her and provided her with friends that actually knew what she was going through. A very valuable resource. Thanks March of Dimes
Tony
Meeting a need
Share Your Story has filled a void in the lives of NICU families. A place to find hope and healing, a place to receive support and give support, a place where you can find someone that really "gets it"!
Thanks, March of Dimes!
A grateful mom!
Michele