1. Provide the title of your story or series and the names of the journalists involved.
"99 Minutes – A Life, A Legacy" By Karen Garloch Photographs by David T. Foster III
2. List date(s) this work was published or aired.
Nov. 14-17, 2011
3. Provide a brief synopsis of the story or stories, including any significant findings.
The series follows Shannon and Kip Brooks, a young Charlotte-area couple who are devastated to learn their unborn baby has a fatal birth defect, anencephaly. They continue the pregnancy, instead of having an abortion, hoping to meet their baby Skylar and find some good in their tragedy by donating her organs. When the Brookses confront resistance from friends and the donor community, they persevere. The result: They spent 99 minutes with Skylar on the day of her birth, surrounded by loving relatives, friends and health-care providers. They call her birthday, Aug. 7, 2010, the "best day of our lives." And they persuaded the Charlotte-area donor procurement agency to accept Skylar's liver cells for donation. Shannon and Kip Brooks were chosen to represent other donor families on the "Donate Life" float in the Tournament of Roses Parade on Jan. 1, 2011.
4. Explain types of documents, data or Internet resources used. Were FOI or public records act requests required? How did this affect the work?
This story did not need documents or an FOIA request. I did review medical records and used Internet sources to find out more about anencephaly and about others who have chosen to carry babies to term despite fatal diagnoses. I also kept up with the Brookses and their friends and relatives by monitoring their frequent Facebook posts.
5. Explain types of human sources used.
My primary resources were Shannon and Kip Brooks, their parents, other relatives and friends, including new friends they found through the Internet who helped support them through the birth and grief process. I was interviewed health-care providers, including the nurse midwife who cared for Shannon and delivered her baby, and officials with LifeShare of the Carolinas, the organ procurement agency that ended up changing its protocol for families such as the Brookses.
6. Results (if any).
As I was reporting this story, Shannon and Kip Brooks persisted in their attempt to get permission to donate Skylar's organs and/or tissues to help another child. At first, LifeShare of the Carolinas, the organ procurement agency for the Charlotte region, rejected the idea, saying it wasn't done. But after more research, LifeShare representatives apologized and allowed the couple to donate Skylar's liver cells to a Durham company that would process them for donation or research. Since then, LifeShare has begun offering the same choice to other parents who receive similar diagnoses for unborn children. LifeShare representative Cynthia Willis has been invited to talk about the new protocol at national meetings, where she will encourage others to give parents this opportunity to help others.
7. Follow-up (if any). Have you run a correction or clarification on the report or has anyone come forward to challenge its accuracy? If so, please explain.
There has been no clarification of any substantive matter. We published one correction of a typographical error that appeared in a sidebar on the first day of the series. It said the birth defect, anencephaly, usually occurs in the first 28 weeks of pregnancy. It should have said the first 28 days.
8. Advice to other journalists planning a similar story or project.
The key to success in a project like this is access. I could tell from our first meeting that Shannon and Kip would be willing to let me and our photographer, David Foster, get close to them. They invited us along for doctor's appointments, ultrasound visits, shopping trips, the unusual "angel shower," and finally to the birthing room during the hours before and after Skylar's birth. Make sure when you're choosing subjects that they are truly willing to let you into their lives. And then demonstrate that you have earned their trust by going over details and making sure that you tell their story accurately, honestly and with compassion.