During the 20th week anatomy ultrasound we found out that we were having the boy. We were also told that there appeared to be something wrong with his heart. It was the worst news we could have received, we were immediately referred to a pediatric cardiologist who performed a fetal echocardiogram. We prayed that the baby was healthy and felt that the world had been lifted off our shoulders when the cardiologist told us that he did not see any anomaly with the baby’s heart.
The rest of the pregnancy went well and we became first time parents on June 4, 2011 to our beautiful son, Lucas Nikoli Shmagin. He weighed a healthy 8 pounds 15.5 ounces and had hair like a rock star and huge dark eyes. During our last day at the hospital, the Pediatrician casually told us that the Lucas had a heart murmur, but that all babies are born with them and they usually close on their own. We did not see a reason for concern, but with the advice of our family physician, we made an appointment with a Pediatric Cardiologist At home, Lucas was thriving – eating and sleeping well. In retrospect, the only noticeable symptoms were his rapid breathing and frequent breaks while eating to breathe. On June 24th, a day we will never forget, we took Lucas to the same Pediatric Cardiologist who had performed the fetal echo at 21 weeks. The Pediatrician delivered the most disheartening news that any parent can receive -- our beautiful baby had a rare congenital heart defected called Transposition of the Great Arteries Type D. In this defect, which accounts for 5% of the cases of Congenital Heart Disease, the two main arteries (aorta and pulmonary artery) are connected to the wrong chambers of the heart. We were immediately referred to NYU hospital in New York. This was the beginning of our nightmare.
For the next three weeks, we lived day and night in the PICU while we saw our son go through a catheterization that lasted for 5+ hours and develop serious complications such as necrotizing enterocolitis and a persistent right lung collapse. Lucas battled for his life every day. A fighter and a true warrior, Lucas fought hard day after day so much that he recovered from the complications in record time. The doctors, who had initially discussed postponing his surgery for up to 2 months, decided to go forward with surgery on July 14, 2011. We were scared to go forward with the surgery so quickly but, at the same time, prayed that this would be it for us and that we could return home to resume our lives, never to return again. The surgery lasted longer than expected since Lucas’ heart had many defects but, nonetheless, after hours of agony we were told the surgery was a success. The first 24 hours were the most crucial so we prayed and held our breath until we passed the critical time without any issues. In typical Lucas style, our son was fighting with the nurses and doctors and had a beautiful pinkness about him - we knew he was going to be okay. For the first time in a very long time we felt joy. We went home on Friday July 15th, after talking Lucas to sleep. Sadly, our baby passed away overnight.
We remember Lucas every single day. He lives in our hearts and in the hearts of those he touched with his magic. Lucas is and always will be our first born, our heart and our warrior. It is in Lucas’ memory that we have created the Lucas Nikoli Shmagin Memorial Fund through The Children’s Heart Foundation to help research the cause, prevention and treatment of congenital heart defects. We feel a responsibility to spread the word on Congenital Heart Disease, how often it happens and the dismal survival rates so that in the future these rates improve significantly.
Lucas’ Mom & Dad
Issy & Dmitry