This article appears in the April 2012 issue of HealthLeaders magazine.
It was a wonderful and rare accomplishment. In 2008, a 23-year-old woman with severe cystic fibrosis successfully carried and delivered a healthy, full-term baby girl at Long Island Jewish Medical Center, in New Hyde Park, NY. Despite that major achievement, the complex regimen of daily medications that Christina Marie McDonald needed to manage her disease created challenges.
"On the maternity ward, no one understood anything about CF," says Ruben Cohen, MD, director of the adult CF program and codirector of the asthma center for the 888-bed tertiary care teaching hospital. "She didn't receive her medications when she needed them."
The circumstances of McDonald's delivery served to highlight an issue that hospital personnel had already begun to grapple with for adult patients with CF: how to deliver the same quality of care in the hospital that patients routinely administer themselves at home.
"After that experience, the patient's father wrote a letter asking, ‘Why does the hospital tie our hands and put these routine measures in the hands of busy medical personnel when the patients and their families know the illness very well and are experts in their own care?'" explains Fatima Jaffrey, MD, director of outcomes research at LIJ Medical Center.