‘Noah taught me how to be brave and strong, even through the most terrifying times of our lives.’

Ashley Sagistano, Lake Grove

“Our son, Noah, was the most amazing baby boy. He was so strong and resilient and lit up a room with his big bright eyes and beautiful shining smile. Noah was born on February 2, 2022. Noah was diagnosed with pulmonary stenosis, double outlet right ventricle and ventricular septal defect. At 11 days old, he underwent open heart surgery and received a post Blalock-Taussig shunt. The following day, he went in for his first of several heart catheterizations, where he received stents and ballooning.

“After six long weeks in the hospital, this little warrior finally came home to meet his big sister, Emma. At about 6 months old, he went in for his pre-surgical heart cath, followed by his second open-heart surgery. Noah was tube-fed for the first nine months of his life and diagnosed with failure to thrive. It was a constant battle to feed him. After working with a consultant, we successfully weaned him off the feeding tube in 10 days. He went from drinking nothing to 20 ounces a day by bottle. He received feeding therapy and nutrition support regularly. Soon he was eating his favorite Domino’s pizza!

“Unfortunately, in October, the findings from a CT scan showed this surgery did not do what it was intended to do. His pulmonary artery did not grow. Noah went in for his third cardiac catheterization. They were supposed to intervene with stents and balloons; however, this procedure was unsuccessful. “He had bleeding in his lungs, which halted the procedure. He spent a week recovering from this procedure. Because this procedure was unsuccessful, Noah needed an extremely invasive and extensive surgery, which had to be at Stanford children’s hospital in California. This surgery is called pulmonary artery rconstruction. Noah finally received his 15-hour surgery in July. Unfortunately, due to complications post-surgery, Noah passed away. He was only 17 months old, but he made such an impact on everyone he met and others he didn’t meet. He was an Earth angel.”

I believe [Noah] was put on this Earth to make people around him smile, be happy and teach us all how precious life really is.

“I believe Noah’s life and his challenges helped to teach us about the strength of the human spirit and resilience. Strangers followed Noah’s journey and were crushed to hear of his passing. He impacted those he knew. In his death, Noah has reminded us to slow down, stay mindful, enjoy every day, take nothing for granted, be kinder, be more patient, invest in relationships and laugh more.

“Noah changed me. Noah taught me how to be brave and strong, even through the most terrifying times of our lives. I believe he was put on this Earth to make people around him smile, be happy and teach us all how precious life really is. Although his time with us was too short, his legacy will live on forever. As his big sister, Emma, said, ‘Mommy, Noah is so proud of you.’ I hope we continue to make Noah proud and advocate for babies like him. We’ll love him always and forever.”

Interviewed by Starr Fuentes