As a way to get to know what drives the Congenital Heart Foundation of Louisiana’s desire to help heart families in Louisiana, we’ve created what we’re calling our “Wednesday Why”. These short stories will shed light on many aspects of congenital heart disease. We will feature children, adults, and families that CHFLA holds dear. If you would like to have your story featured on our page, please send us a direct message.
We will start our Wednesday Why series with one of CHFLA’s board member’s own children, Noah Ledet. It is the perfect day to feature Noah because exactly 3 years today ago he underwent open heart surgery at Boston Children’s Hospital.
On November 10, 2014, Noah was born with severe, complex congenital heart disease. He was diagnosed in utero with Double Outlet Right Ventricle, Hypoplastic Left Ventricle, Mitral Valve Atresia, Ventricular Septal Defect, and Atrial Septal Defects. Noah would need at least three staged open heart surgeries to repair his heart defects and give him a chance at a normal life. Due to the complexity of Noah’s heart, his family and cardiologist felt it was in his best interest to travel to Boston Children’s Hospital for these surgeries. Boston Children’s Hospital is a world renowned pediatric hospital and at the time the pediatric cardiology department was ranked number one in the United States.
Noah was a strong and remarkable patient with a very unique anatomy. He and his family spent three and a half weeks at Boston Children’s Hospital undergoing treatment. He had an interventional cardiac catheterization followed by his open heart surgery a few days later; both procedures were successful. Due to the timing of his procedures, the family spent Christmas and New Years at BCH. 2 weeks after Noah’s surgery, he was able to return home to Louisiana. While home with his family, Noah was thriving. His medical team was amazed at how well he was doing. He was a beautiful, joyful baby and the light of his family’s lives.
During the interstage period, the time in between the first and second open heart surgeries, Noah very quickly became ill and passed away unexpectedly at his local hospital. He was 3.5 months old. His death left his family utterly devastated and created a permanent void in their lives. It also taught them to live each day seeking and choosing joy and to appreciate every moment of the lives they are given. Noah’s death gave way to his mother’s desire to spread awareness about congenital heart disease and to support families experiencing the aftermath of child loss.
It is because of Noah’s life and unexpected death, that CHFLA understands the need to support our families not only through medical and surgical treatment, but through the grief journey families walk through when congenital heart disease ends in the loss of a beloved life. So many of our patients go on to have multiple successful procedures and surgeries and ultimately live wonderful lives; but the hard reality is that congenital heart disease is the number one cause of death in infants. It is our mission to support families through every aspect of congenital heart disease.