On January 1, 2012, our family began the year with the birth of our second son, Asa Heard Karchmer. Like all babies, Asa delivered love and wonder into our lives.
By late morning, Asa’s clinical picture started to become clearer. A pediatric cardiologist confirmed that Asa was born with a very special heart – one which, anatomically speaking, worked just fine in utero but couldn’t make the transition to this world without serious medical intervention. His diagnosis was a congenital heart defect known generally as coarctation of the aortic arch (or more specifically as an interrupted aortic arch): a severe constriction of the main artery leading from the left ventricle of the heart and delivering blood to the entire body. It is among the more common types of cardiac defects among newborns and is often accompanied by other cardiac defects (in Asa’s case, a ventricular septal defect, or VSD, and a bicuspid valve). The cardiologist explained that this particular defect was not a problem in utero where there is a bypass shunt (called the PDA) between the pulmonary artery and the aorta, connecting below the arch and the coarctation. This duct began to close a day or two after birth, as it does in all babies. Yet in Asa’s heart, as the PDA closed, the coarctation prevented blood flow to most of his body, putting him into severe crisis.
We sat anxiously for a week with Asa in the NICU, enduring what seemed like an endless battery of tests on his fragile body (spinal tap, EEG, extensive blood work, MRI, etc.) until he was stable enough for heart surgery. So when he was just one week old, Asa underwent open heart surgery to repair the coarctation and VSD. His chest was left open for four more days to accommodate internal swelling but otherwise, Asa pulled through like a superstar. A miracle. In another three weeks, he was nursing well and we finally took him home to his older brother, and friends, in the mountains where we live.
Our experience with Asa’s newborn cardiac crisis gave us emotional and spiritual resources that we would draw upon again, six months later, when he developed Infantile Spasms, a fairly rare and frequently devastating form of childhood epilepsy. Although Asa’s epilepsy remains a daily battle, he is now a lively child with a strong and caring heart. He is now the middle of three brothers, each unique, yet Asa’s more difficult journey has deepened and strengthened our own hearts, along with the hearts of everyone who knows him.
Blog content provided by Dana Powell, mother of Asa, and You’re the Cure Advocate