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| KYLE'S Heart Helpers |
| Kyle's Story 1 in every 100 babies is born with a Congenital Heart Defect (CHD), making it the most common birth defect in the United States. During a routine sonogram at 16 weeks gestation we received the devastating news that there was "something wrong" with our son Kyle's heart. One week later a fetal echo confirmed his diagnosis of Hypoplastic Left Heart Syndrome (HLHS). HLHS is when the left side of the heart is underdeveloped. Kyle's left ventricle was basically non-existent which essentially left him with only half of a functioning heart. His only chance of survival would be a series of three open heart surgeries. On January 19, 2014, Kyle was born at Morgan Stanley Children's Hospital at Columbia Presbyterian in NYC. When he was only four days old we handed him over to Dr. Emile Bacha for his first open heart surgery. After a slow yet steady recovery, he came home with us after almost a month in the hospital. At three and a half months old his cardiologist sent us to the ER when his sats had dipped below 60. By the time we got there he was in distress and his sats were under 40. Two days later he underwent his second open heart surgery. His recovery was much stronger and faster than the first one and he was sent home six days post op. Complications sent him back to the hospital five days later where he spent three weeks fighting for his life. Thankfully he won that battle due to his strength and resilience as well as the amazing medical team at Columbia. For 3 years he/we lived a pretty normal life outside of the continuous cardiology appointments and annual cardiac catheterization. Then in the summer of 2017, the inevitable day came when his cardiologist, Dr. Zvi Marans, let us know it was time for Kyle's 3rd open heart surgery. On November 8, 2017, we yet again had to hand over our now 3 yr old son to his surgeon. The surgery itself was a huge success yet he had some complications during the recovery which extended his hospital stay. The recovery from his third surgery was much more challenging on Kyle both physically and psychologically, however, his strength and resilience persevered yet again. Kyle has a long and challenging road ahead of him. His life will be filled with cardiology appointments, EKG's, echocardiograms and other invasive procedures including a 50% chance of needing a heart transplant by the time he is a young adult. Yet through all the adversity, he lives his life to the fullest while bringing love, light, and laughter to everyone he meets. He loves more with his half of a heart then most people do with a full one. |
