Nico was born on March 31, 2015 with a significant heart defect known as Transposition of the Great Arteries. This means his two main arteries in the heart, his pulmonary and aorta arteries, were reversed not allowing him to make oxygen for himself. Normally, babies need open heart surgery 5 to 7 days after birth to survive. What wasn’t expected when Nico was born was his oxygen level to drop to 30% in the first 2 hours of life, causing him liver and kidney failure, brain damage from the lack of oxygen and 6 seizures in the first 48 hours.
With many prayers, Nicos body started to show positive signs around 2 weeks old. The doctors were confident that Day 17 was the best day for his open heart surgery, even with his current status. After 8 hours had passed, Dr. Redmond Burke told us he made it! His heart started back on the FIRST beat! Our miracle was on his way to recovery. More time went on and we were fighting an uphill battle with Nico, kidney and liver numbers fluctuated, he needed several blood transfusions, he needed 100% help breathing, he was sedated majority of the time, on a feeding tube and he was on what seemed like 100 medications daily. Only time would tell how Nico did, we ended up going home the day after Mothers Day.
At at a check up around 4 months old, his cardiologist diagnosed us with something else. “Nico has pulmonary vein stenosis”. All we could ask was, “What”? Pulmonary Vein Stenosis is when your veins that bring oxygenated blood from the lungs back to the heart are narrow, making it super hard for oxygenated blood back to the heart. We asked, “How do we fix it”?
Well, this is harder than the first diagnosis in our eyes, because there is no fix for this one. It is progressive if left ignored, but manageable with another open heart surgery, frequent catherization lab procedures and managing it with chemotheraphy. Why Chemo you may ask. Chemo is a new option and only available in Boston, Massachusetts. The tiny cells that grow in the pulmonary veins are the same type of cells that grow on cancerous tumors. The chemo is supposed to help reduce the cell growth, reducing the number of catherization labs Nico is put through. It is a very rare diagnosis and only about 50 babies are currently on chemo for pulmonary vein stenosis.
Nico had his second open heart surgery on October 29, 2015 for pulmonary vein stenosis. We went to Boston for the first time in January, Nico had his 4th catherization done and started chemotherapy. We return to Boston first week of April for his 5th catherization.
Thank you for taking the time to read about my son and his journey!