Title : A Parent’s Perspective: Incompatible with Nature–A Parent’s Memoir of congenital Heart Disease
Abstract:
While 99% of the time the heart develops normally in utero, approximately 1% of the time there is a problem usually involving one of the four heart valves, holes between the two atrium or ventricles or between the aorta and pulmonary artery or some combination of lesions. Although some problems are due to known chromosomal or gene abnormalities, the etiology of most are still unknown. Much less commonly, perhaps one in one hundred thousand, there seems to be a problem with the bilaterally and there is only one atrium, one ventricle or one vessel leaving the heart. When there are variations of venous return to the atrium there may be variations in the position of the abdominal organs and veins, usually called heterotaxy syndrome.
My son Marc was born with one of these heterotaxy syndromes with all the systemic veins coming back to the heart entering into a “common” atrium, a single large ventricle, and only one great vessel leaving the heart, in Marc!s case the aorta. The pulmonary artery, the vessel going to the lungs was not connected to the heart.
Having a single atrium and single right ventricle, mitral atresia and pulmonary atresia; basically only half of his heart as well as with Heterotaxy Syndrome whereby the internal organs are arranged on the wrong side of the body–the cardiologists gave him no hope and told me to let him die. I was alone in a foreign country.
My multi-award winning story, Incompatible with Nature–Against the Odds: A Parent’s Memoir of Congenital Heart Disease details my struggle of doing all I can to ensure my son has a chance at life while battling my own fears, an array of naysaying doctors, my son!s innumerable infections, and struggling with a foreign language.
Despite the prognosis and the difficulties, Marc is today thirty-seven years old and thriving. I
have written and want to share this story to inspire doctors and caregivers to be empathetic for their charges and to encourage patients to be courageous and assertive in their health care.
Never give up.
