Living With Conditions Family Experiences

Jana Monaco

The Monaco family epitomizes why newborn screening is so important. Jana Monaco is the mother of four children, two who have Isovaleric Acidemia (IVA), a metabolic disorder detectable at birth. However, when Jana's oldest son, Stephen, was born, Virginia did not require screening for IVA. Stephen lived a healthy life until age three, when he sustained a life-threatening metabolic crisis that left him with neurological damage and other severe medical complications. Stephen is now thirteen, and Jana has dedicated her life to making sure all children are screened for IVA. Jana holds several key positions at Children's National Medical Center and is an Advisory Committee Member for the Health Resources and Services Administration, Maternal and Child Health Bureau.