1. Provide the title of your story or series and the names of the journalists involved.
A journey of risk, hope: Dylan Catania was born with what his surgeon called "a big, bad brain" that left him racked with seizures and could lead to severe disability. Would severing half of it give him a chance at a normal life?
2. List date(s) this work was published or aired.
12/26/2010
3. Provide a brief synopsis of the story or stories, including any significant findings.
Through sources at UCLA hospital I learned of a newborn baby who had been diagnosed with a seizure disorder that required radical brain surgery. I contacted his parents and doctors and persuaded them to allow me, a photographer and videographer to follow them before, during and after surgery to explain the science involved.
4. Explain types of documents, data or Internet resources used. Were FOI or public records act requests required? How did this affect the work?
I obtained HIPAA clearances to interview numerous pediatric neurologists, neurosurgeons, residents and nurses who treated Dylan Catania at Ronald Reagan UCLA and Santa Monica UCLA Medical Centers. I also applied for clearance (HIPAA and hospital) for myself, a photographer and videographer to observe Dylan's treatment, including his surgery, and met with several other parents to discus similar cases. I gleaned a lot of background from online hemimegalencephaly blogs and chat rooms. I read numerous scholarly articles about the surgery, reviewed them with surgeons and with our graphics department to ensure we described and illustrated the procedure in vivid detail. Our final story included a combined video/audio/photo presentation (see link below) that linked to the Catania family blog, allowing readers to hear about them in their own words and email responses to them directly.
5. Explain types of human sources used.
I interviewed several families before selecting the Catanias as the focus of the story. I also met with more than a dozen families at the Hemispherectomy Foundation's annual picnic to get perspective on what the Catanias were going through and to better understand the medical challenges Dylan would face. Dylan's doctors were generous with their time, discussing his case and walking me through what would happen during the surgery so I knew what I was seeing and reported it accurately. They also helped us create the interactive graphics that walked readers through the surgery, supplemented with a glossary of medical terms.
6. Results (if any).
We received scores of emails from readers, including parents who thought their children might benefit from similar surgery. We included a link to the Catanias' personal web page with the story, and many readers contacted them directly. Readers also responded to the Q&A we included with Dr. Raman Sankar, Dylan's pediatric neurologist. Both the family and the doctors said they felt the resulting story helped raise awareness about seizure disorders and available treatments. Other news outlets have used our graphics to explain the surgery, and Dylan's occupational therapist has used the story to teach her students at the University of Southern California.
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.
No corrections.
8. Advice to other journalists planning a similar story or project.
Hold out for a family that is willing to let you hang out with them all the time and talk to them about everything, specially sensitive topics. Include photo and video from the beginning of a story project. Insist on full access at the hospital for the reporter, photographer and videographer. Make time at the end of the editing process to review technical details of the story and graphics with the doctors involved, particularly the surgeons. Revel in the beauty of medical language!