ongenital Heart Disease (CHD) is the most common type of birth disorders in the U.S. This disease is caused by the abnormal formation of the heart during fetal development. According to the Centers of Disease Control and Prevention (CDC, 2019)*, it affects nearly 1% of the annual births in the country. Babies who have this condition are born with it and often have to undergo multiple heart surgeries from birth and in the first years of their life.
In 2013, we became that 1%. A few weeks after finding out we were expecting our first child, an ultrasound showed that our son had a heart malformation. This required for our pregnancy to be very closely followed-up by a fetal specialist, a pediatric cardiologist and our ObGyn until birth. Luca Paul Pineda was born on October 2nd, 2013 with a Hypoplastic Left Heart Syndrome (HLHS), which is a rare congenital heart defect in which the left side of the heart is severely under developed. Luca was diagnosed with this condition while in utero during the first trimester of pregnancy. This allowed us time to prepare for what was needed for him to have a chance at a normal life. An immediate open heart surgery was performed by Dr. Raymond Burke right after Luca was born. Obliging my wife, Marie Cecile, to let the nurses take him and lose the special bond created between mother and baby right after giving birth. The operation was a success but unfortunately our son had stage 4 bleeding afterwards causing his entire system to slowly shut down leading to his passing on October 26, 2013.
While at the hospital, we witnessed how many parents were not as fortunate to have the same time to prepare for such events or did not have insurance and if they did have insurance, it did not cover the operation(s) needed. We want to help these families through these incredibly difficult times by assisting financial support so they can give their babies a fighting chance to live a semi-normal life and most importantly - to have the bonding time with their parents.
*Centers for Disease Control and Prevention. (2019). Congenital Heart Defects. Retrieved from https://www.cdc.gov/ncbddd/heartdefects/index.html.