The day my unborn son was diagnosed with lethal congenital heart defects, I asked, "Why my baby?" for only a few minutes before I heard the answer, "Why anyone? Who deserves this?" The answer is, no one. No child deserves to be the one (out of every one hundred) child born with Congenital Heart Defects. No parent deserves the challenge of making life-or-death decisions for their children. No parent deserves to bury a child. Yet, of the 40,000 babies born with CHD in the USA every year, 8,000 of them will not survive to adulthood. Congenital Heart Defects are the most common birth defect not only in the USA but globally. Two million Americans are living with Congenital Heart Disease and they need our support and research to extend and improve their lives. My son is one of the 80% still in the fight, and I fight for him, people like him, and in memory of the hundreds of thousands of people who were lost to CHD. Now, when I ask myself, "Why my child?" I am empowered by my answer - I am here to make a difference for him and the children like him. I've made that difference by founding two nonprofit organizations: Hypoplastic Right Hearts and The Colorado Chapter of the Children's Heart Foundation. I have planned parent education medical conferences, advocated for newborn screening in the state of Colorado, and I routinely write about CHD advocacy including the ethics of managing chronic illness for the American Academy of Pediatrics Section on Bioethics.
I’m a Patient Leader