The inspiration for creating Preemies.org came from my own experience with delivering a preterm baby. While my son was in the NICU I began scouring the internet for websites about prematurity, neonatology, specialty areas of treatment, and expected outcomes and was confronted with the problem that the information I sought was peppered across numerous websites. Some of them were more trustworthy than others, and many were narrowly focused on a single aspect of prematurity. The fear, anxiety, and need for information that I felt kept me in a constant state of seeking comprehensive online resources to no avail, which eventually led me on a journey to find a way to provide this resource for other families having the same problem.
I began my graduate studies in August 2010 and sought a preemie mom for my first photo story. I contacted the Ronald McDonald House in Chapel Hill N.C. and was connected with Marrica Thompson through the resident manager. Baby Emily’s medical problems made me realize that my own experience had just scraped the tip of the iceberg as far as the range of possible health issues was concerned. I began interviewing doctors and seeking medical sources for more information.
From there, I took an interdisciplinary health communication course that provided me with health communication theory and the understanding that my website could do more than provide information. I decided to use health comm theory to create tailored and directed messaging with the intent of improving health outcomes.
Dr. Lail provided medical scholarship that I used to begin crafting the messaging for the site and I conducted my own research for additional guidance. All of this led me to two central themes. First, that increasing the knowledge of parents increases the chances for the best possible health outcomes for children by increasing parental efficacy. And second, that establishing a family-centered medical home can help to provide the best possible care for sick babies after they are sent home. These themes are seen repeatedly throughout the site to reinforce the messaging.
My efforts to connect with preemie moms was hindered by the need for NICU babies to have quiet environments in order for them to rest and use their energy on growing and getting better. To ensure this, the NICU is a closed and secured environment that at times even restricts access to family members. In addition to that closed community, many families are reeling from shock and concern and are unable to expose that raw emotion to a stranger. By necessity, the NICU staff and the Ronald McDonald House staff that I contacted were very protective of their families.
In telling the stories of my two preemie moms, I encountered some challenges that caused me to make some difficult decisions. In baby Emily’s story, I found myself realizing that her NICU photos showed that she was a very sick baby. I had promised the photos to Marrica, but when I realized that they might impact her negatively, I decided not to send them. I didn’t tell her that I was worried about the photos causing her concern. I just didn’t honor my promise. When Marrica contacted me more than a month later asking for the photos, Emily had made it out of the hospital and was improving. I sent the pictures gladly, knowing that they were more of a testament to how far she had come than an indictment on her condition, and I think I made the right choice.
Takeila gave me an open home and heart and told her story beautifully, but it took a toll on her. I realized after her interview that she was still wounded by her experience even though it had taken place eight years earlier. Although my original plan was to spend time with her to document her life and the victories she had achieved using photography and videography, I was worried that she wouldn’t be able to continue. When Takeila contacted me to say that she had changed her mind, I was not surprised and did not attempt to proceed beyond her wonderful interview. I’m grateful for the incredible insights that she gave and again, I think I made the right choice.
After launching the site, I intend to continue to expand the content until Preemies.org becomes the premiere source for substantive information and support for parents of preemies. Although the causes of prematurity remain largely unknown, the medical information on how to treat these tiny patients effectively is growing daily. With ongoing effort, I hope to continue to provide information to parents that can help them with making important decisions about their baby’s care.