- Lost her first daughter to an undiagnosed metabolic birth defect
- Testified before Congress
- Helped get the national guidelines for newborn screening issued
Jill and her husband were joyfully celebrating the healthy birth of their first daughter. But her first night home from the hospital, the baby died. The autopsy found that she had an undiagnosed metabolic birth defect. Jill and her husband converted their pain and loss into action. In 2002, Jill testified before Congress in support of the Newborn Screening Saves Lives Act (.PDF, 14KB). In 2008, the bill was signed into law by President George W. Bush. As a result, in 2010, national guidelines for newborn screening were issued to promote the screening of all babies for life-threatening, identifiable, but treatable, disorders in every state.