Tony, born 2007Our little Tony, also known as "tough" Tony was born July 18, 2007. We had no idea that he had any kind of heart defect until he was born.
When Tony was born he wasn't breathing. I knew that something wasn't right when we didn't hear his cry. I asked several times if everything was okay and the nurses joked that he was probably just being lazy and needed some help getting the fluid out of his airway. They rushed him to the NICU, where he had to be intubated. About an hour later we were able to go see him and were told that they were doing tests. They said he might have an infection. About an hour after that the NICU doctor came to our room. I immediately noticed that one of the cardiologists was holding a diagram of a heart. My heart sank and I knew this was not going to be good news.
We found out that the reason why our little guy was not breathing was because he had a heart defect. They explained that he would need to be flown to Miami Children's Hospital for an operation. We didn't know what to expect. The last thing you imagine being told a few hours after giving birth is that your baby needs an operation and on his heart of all things. Well, that was just the beginning. Once at the children's hospital, we found that he actually had several heart defects: Transposition of the Great Arteries, Coarctation of the Aorta and a Ventricular Septal Defect. He had open heart surgery on July 20th, at only 2 days old. He made it through the surgery and the long recovery, but something went wrong neurologically because they found after doing a swallow study that he as aspirating silently. They did an MRI of his brain and found that he had enlarged ventricles and we later found out that he had hydrocephalus, and now has a VP shunt to treat that.
Now that I look back, I can't believe what our little one has been through. In the beginning, I kept asking why. Why did this happen to him? Why our baby? I felt like I did something wrong. I began to realize that these things do happen and they do happen to "good'' people. I also realized that it is not the end of the world.
Our little "tough'' Tony is doing great now! His heart surgery was a success...thanks to the wonderful surgeons and nurses at Miami Children's Hospital. He also has not had any trouble so far with his shunt! Now our new goal is to get him moving, he is a bit behind with his motor skills. Other than that he is our little miracle and we look forward to watching him grow up.
UPDATE 2010: Tony has not had any trouble with his heart since his surgery at two days old. We now visit both his cardiologist and his neurosurgeon (for the hydrocephalus) once a year. He loves to be outdoors, and he will talk your ear off! All in all, he is an active and very happy little boy!
UPDATE 2018: Tony is now 11 years old! Hard to believe how fast time is flying by! He had a second open heart surgery July 2017 to correct narrowing in his pulmonary arteries and also on his enlarged aorta. We were in the hospital for 5 days. He kept getting low grade fevers the couple weeks following the surgery. Three weeks after his surgery he spiked a high fever and we were readmitted. He was treated for endocarditis. We were in the hospital for 10 days and he was send home with PICC line to treat the infection. He had the PICC line for six weeks. Missed the first week of school and we had to deal with one clogged line! But we got through it! He's doing great now. What a journey these last eleven years have been! He's active, funny, caring young man who loves his video games and has lots of energy! Those who meet him can hardly believe all he's been through!
Story by Tony's mom, Melissa - FLORIDA
Jack, born 2017