When Noah Maddox was born, he was incredibly blue. He had many severe heart defects, but still managed to thrive and even go home after a 25-day stay in the NICU. Noah was diagnosed with Heterotaxy Syndrome, which usually involves heart defects of varying types and severity. In addition, organs may be in abnormal places in the chest and abdomen. Noah had AV Canal Defect, Double Outlet Right Ventricle, Transposition of the Great Arteries, Pulmonary Valve & Subvalvar Stenosis, Hypoplastic Left Ventricle, Common Atrium, Bilateral SVCs, and Left-sided IVC. His mother routinely heard from medical professionals that her baby wouldn’t make it through the night, yet Noah always, always came back to her.

Noah underwent a lot of operations and procedures in his short life – Ladd’s procedure, BT shunt placement, g-tube placement, Glenn procedure, PA band placement, Glenn take down, Rotoflow (VAD) placement, eleven heart catheterizations, and multiple trips to interventional radiology for various procedures.

Noah passed away on August 23, 2014. He was 17 months and he always defied the odds. Noah was born with many severe CHDs, but managed to thrive. He had an extended NICU stay because of intestinal issues, and needing that surgical intervention, but still went home at 25 days old. Noah maintained his oxygen saturation goal well for quite awhile. He was exclusively breastfed, and gained weight well until his first heart surgery at two and a half months. The night after, he went into cardiac arrest, but came off ECMO twelve hours later, and was home two weeks later. He received his G-tube at four months old and needed to be put on a diet, because he gained weight very easily. He was 20 lbs. at his first birthday and it is his mother’s belief that his weight and overall health was what was able to keep him with her for an additional four months following his Glenn surgery.  “He loved me fiercely; he was SO brave, and it helped him tremendously. He was perfect.”

For Amber, having a Heart Hero in her life is about growth. “Noah is my second child, but he’s made me the mother that I am today. He reminded me daily to never take a single moment for granted and to live every single day to the fullest. I feel like he’s given me one of the biggest reasons to live, and while I no longer have him to care for, I aim to make a difference for the rest of the heart babies, that I fiercely love as if they’re my own.”

Follow Noah’s story on Facebook: https://www.facebook.com/NoahsHopeForHeterotaxy