Eight and a half years ago, our son, Maximus, was born. The happiest and scariest days of our lives began. The sight of our first born child was overwhelming… our beautiful baby boy was here! But as our hearts filled with indescribable love, we also knew that Max’s heart, as formed in the womb, was not sustainable because he had developed a Congenital Heart Defect (CHD) called Transposition of the Great Arteries (TGA) with Ventricle Septal defect (VSD) and Pulmonary stenosis. The “great arteries”, the aorta and the pulmonary artery, are the two major arteries that carry blood away from the heart. In cases of TGA, these vessels arise from the wrong ventricle, and are transposed from their normal position. This transposition creates a situation where the systemic (to the body) and pulmonary (to the lungs) circulations move in parallel rather than in series (crisscross to all 4 chambers). In layman’s terms, Max’s blood would not flow properly in and out of his tiny, beautiful, little heart, and his heart would have to be re-piped and patched within two days of his birth for him to survive.
Max was born in the Special Delivery Unit (SDU) of Children’s Hospital of Philadelphia (CHOP), and after a precious few seconds where Krissi got to hug and kiss him, Max was literally passed through a cut-out in the wall of the delivery room into an adjoining room where doctors and nurses hooked him up to countless machines and administered him meds and food through IVs and tubes which seemed like they covered every inch of his 7lb, 7oz body. All of this in effort to help his heart and body remain stable until he was strong enough for surgery. Max was transferred about an hour later to his first “home”, his pod in CHOP’s amazing Cardiac Intensive Care Unit (CICU). On the morning of May 17, 2011, a few hours shy of being two days old, our brave, little heart warrior went in for open heart surgery – a procedure called an Arterial Switch.
I don’t know if Krissi and I will ever be able to adequately explain that morning. Max will never know how brave he was, and he will never know how scared we were. Thankfully, Max was under the care of one of the best pediatric cardiothoracic surgeons in the world, Dr. Thomas Spray, and a team of medical professionals who are world-class – all of whom Krissi and I are forever indebted to, humbly amazed by, and thankful for beyond words. About 3 hours into what was supposed to be a 6 hour procedure, we got the call to come see our baby. He had more wires, more tubes, more machines, new bandages, new scars (in time), and most importantly, a “new” heart. Sadly, not all families have this same outcome.
Our family’s hope is that one day all families of “heart babies” will have the opportunity to receive the same medical care that CHOP’s CICU afforded to our son. Most people have no clue that 1 in 100 babies today will be born with some form of CHD, or that CHD causes more deaths in children under the age of one than any other disease. In fact, CHD accounts for nearly 33% of all deaths in children under the age of one. Each year, nearly 40,000 babies born in this country will be born with some form of CHD, and thousands of them will not make it to their first birthday, while many more will suffer from complications and not live to see adulthood. Research is being conducted at facilities such as CHOP’s CICU and many other places in an attempt to discover the cause of CHD, but still today that cause is unknown. No one knows why Max’s heart formed in the abnormal way that it did, and we were beyond blessed that there was a corrective, surgical procedure to repair his heart and that the team of medical professionals at CHOP’s CICU could perform the Arterial Switch and care for Max in that critical time.
Please come out to Leggetts (on the beach in Manasquan) on Sunday, September 22nd, for the 13th annual Big Hearts to Little Hearts Heart Walk when we are walking to show our support not only for Maximus, but for all “heart babies” – present, future, and past. Twenty years ago, Max would not have been fortunate enough to receive the world class medical care he received at CHOP as well as from our beloved, local pediatric cardiologist, Dr. Elsa Castro. We are not only walking to support the heart babies, but we are walking for their medical protectors as well – the cardiologists, nurses, and surgeons who care for these children. Krissi and I have created a team called “Miles For Maximus” that will walk, and the dollars we raise via this page will help support the Big Hearts to Little Hearts foundation. The overwhelming support we received last year (both in walkers and in donations) was very special to us, and we hope to see you all again this year and hope to surpass the $7,000+ that the “Miles for Maximus” team raised last Fall. With your help, we can do it! Please click on the “DONATE” banner above to help raise funds for “Miles for Maximus” and Big Hearts to Little Hearts, and come out to walk with us @ 10am registration 11 am walk on Sunday, September 22nd. Hope to see you all there!
Krissi, Adam, and Maximus (and Kellan!)