Our son, Jack, was born on February 23, 2017 and was by all accounts a happy and healthy newborn. One day later, a very perceptive nurse took notice of some unusually fast breathing and after a consultation with the house pediatrician, it was recommended that Jack be moved to the Neonatal Intensive Care Unit (NICU) for further observation. With very little progress over a two week period, Jack was transferred to the Morgan Stanley Children’s Hospital at New York Presbyterian for more expert care. Finally, after three weeks in two NICUs, Jack was diagnosed with a deformed mitral valve – a congenital heart defect, that was causing regurgitation and stenosis. He became a 1 out of 100 with a CHD. We took him home on March 15th, but the journey was only just beginning.
Jack’s overall health declined, as his mitral valve was too deformed for his body to compensate. He went back to NYP for further observation and then, ultimately, surgery. On May 4, 2017 Jack had open-heart surgery to repair his mitral valve. Though he was cared for by a brilliant team, and operated on by a world-class surgeon, the repair was not a success. On May 10, 2017 Jack had a second open-heart surgery to fully replace his mitral valve with a Melody valve. The Melody valve, while not experimental, has only been in use for this purpose for the last ten years. Jack’s particular and specific surgical presentation was said to be one of only about 30 in the country.
Jack’s recovery in the Pediatric Cardiac Intensive Care Unit (PCICU) was long, draining and stressful. After about a month, at long last, he was ready to come home and begin the journey of a critical CHD baby, one that has included speech, occupational and feeding therapy and the sheer terror of having young parents, who sometimes didn’t know what to do.
Over a year has passed since his surgeries, and while we know there will be more in the future, a few things are crystal clear. One, we are lucky both in where we live and the time in history in which we do. In another place, or another era, Jack’s fate would have been murkier. Second, the team that has helped Jack to this point are nothing short of phenomenal and all are essentially angels on Earth. Third, we need more awareness, research and funding in this area. Our little heart warrior is thriving today because of a dedicated medical staff, an amazing pediatric cardiologist, countless nurses, speech/occupational/feeding therapists and support network that continues help him be the happy the little boy that he is. We need more of these people across the country, not just in the cities or on the coasts, but everywhere. Hopefully, we can help raise some money that furthers that cause.