Tyler James, our sweet heart warrior was born February 14, 2024. Shortly after his birth we were told that he had a loud heart murmur, but that it was likely not a concern. After being discharged and sent home from the hospital, we watched him struggle to stay awake, nurse or take a bottle, and breathe rapidly. We also noticed that he had rib retractions and a tracheal tug.
During his 48-hour post birth appointment, we informed the doctors of what we were noticing. We were told, "It's normal, but you can get a second opinion if you'd like." We were advised to seek a second opinion from a pediatric cardiologist. We soon met with his first cardiologist and again were given the same response. His symptoms were not concerning. However, we were not convinced. Because Tyler was also struggling to eat and gain weight he was seen weekly by his pediatrician.
Sadly, multiple doctors dismissed our concerns. Thankfully one finally did not dismiss us or our concerns. She advised us to take Tyler to the emergency room. There additional tests could be done without further delay. We arrived at the emergency room to multiple doctors and nurses who began hours of blood draws, physical exams, and X-rays. At 3 weeks of age, Tyler was diagnosed with congenital heart disease. He had a large ventricular septal defect (VSD) and two small atrial septaldefects (ASD). Our little guy continued to breathe rapidly, struggled to eat, had a tracheal tug and rib retractions; all clear signs of heart failure.
After weekly visits to the cardiologist, multiple EKG's, echocardiograms, blood draws, sedated CT scans, medications and special formulas to gain weight, his symptoms of heart failure were worsening. It was decided that surgery could not be put off any longer.
June 14, 2024, at exactly four months old, Tyler had open heart surgery at Dell Children's Hospital in Austin, Texas.
Though Tyler suffered from heart failure from birth, he never gave in to his symptoms, showing his true strength and courage. Since surgery Tyler hasn't skipped a beat. He has defied all odds, never letting his heart slow him down. Tyler exemplifies the true definition of a Heart Warrior.
