Our third son was born on May 14,2007 a healthy full term baby…or so I thought! It had been four years since I’d last held an infant, so Tino’s rapid labored breathing didn’t set off any alarms and our first two days after delivery were uneventful. On the third day, my nurse said I could go home, so I packed and prepared to leave. Tino’s pediatrician walked in for one last exam. He said something didn’t sound right with his heart. He suspected a heart murmur, but would have to do an echo. In my mind, I kept thinking this is silly, Tino’s fine. I have two healthy boys at home and neither my husband or myself have any health issues. I was nervous and anxious but trying to hide it. So I sat and I watched as the echo was performed. Finally, the doctor came in and said “I’m sorry. Your son has a malformed heart. He will need to be transported to St. Josephs Hospital.” In a matter of minutes, they took my baby, my newborn son and prepped him for his first helicopter ride to a place I had never heard of. This was happening so fast. Just a moment ago, I was packing to go home. So many thoughts raced through my mind: Is my son going to die? What did I do wrong during pregnancy? What other defects could he have?
I wasn’t allowed to ride with him in the helicopter so the drive to the hospital was the longest of my life! I don’t even know how we got there, but we did. There was our precious 3 day old with Ivs, leads, and machines everywhere. What a shock this all was! We finally sat down and talked to Dr. Alboliras who
explained to us that Tino had a complex congenital heart defect called Double Inlet Single Left Ventricle (DILV). He would require a series of three open heart surgeries: one at six weeks, four months, and the last between ages two and four depending on his condition. Knowing absolutely nothing about heart
disease, my husband and I were devastated. Tino spent 6 weeks in the NICU. I visited him at all hours and cried endless days and nights for my son. I was saddened by the thought of him never being able to live a normal life and terrified of the upcoming surgery.
I informed myself as much as possible on positive stories of survivors and kids living with congenital heart disease. I soon realized that my son is special and he is strong. Dr. Cleveland and Dr. Nigro performed his surgeries and he couldn’t have been in better hands. He had his third surgery, the Fontan Procedure, in May 2010. He was in the hospital for eight days and he continues to show me everyday what a true miracle he is.