ToF as we would learn, has four components. Two are major, a large hole-VSD, that allows blood to pass from the right ventricle to the left ventricle without going through the lungs. And the second is a narrowing (stenosis) at or just beneath the pulmonary valve. In Zachary's case it was called atresia (no blood passing through at all), thus blocking the flow of blood from the right side of the heart to the lungs. The other two components are the right ventricleis is more muscular than normal, and the aorta lies directly over the vsd. This results in the cyanosis(blueness), which appears soon after birth. Most children with ToF will need many surgeries before school age and of course lifelong medical follow-up.

My heart sank to the floor and I was in shock. Why my baby? I still ask this burning question to myself. We were overwhelmed and scared, David was able to go see him and took several pictures before he was transported to another hospital (Children's Hospital in Buffalo, NY). I was able to see him for two minutes before he left. I still remember how he looked with the vent tube to help him breathe, he was so pale, tiny and so precious. I was not able to see him as I had a c-section and I was only released one hour before his first surgery on the third day of his life. I was not sure what we were about to endure, I got to his bedside and saw all the Dr's around him. I will never forget any of this as long as I live.

We walked him down to the double doors of the OR and he underwent the BT Shunt operation. This was a partial repair as he was too small to tolerate what he needed done. I don't think I will ever forget when I saw him in the recovery room. This is an image a parent never wants to see, it will forever be burned into my mind, tubes draining blood from his tiny heart, a vent to help him breathe, so much for such a tiny baby to endure.

Two long weeks later we came home with our son. It was hard on us both, I think more so for me as David had to go back to work and I was home alone with a tiny baby who had heart surgery. Being a new mom and not knowing much about parenting I had a lot to deal with. For the next five months I cried all day every day, knowing we had to get him ready for the major repair. The day came for the cardiac cath which demonstrated he had aquired pulmonary atresia. A date was given to us for his open heart surgery to take place. Aug. 27th 1998, his five month birthday.

It took alot to stay in control, so many prayers and I thank God everyday for the strength to get us through this. The day came upon us so fast. Zachary underwent over 8 long hours of surgery. He had a 14mm aortic homograft from the right ventricle to the main pulmonary artery, he also had right pulmonary artery angioplasty performed. They had to take down the BT shunt (from the surgery at three days old) and close the VSD (ventricular septal defect). The day was very long and so stressful. When we were able to see him his chest had to be left open due to swelling, on the good side, he was so pink!! We just cried and prayed that the next 24 hours would be problem free.. they were and he was home in 4 days!!!.

It has been 14 months now since the surgery, he does have mild pulmonary valve stenosis. We will have to visit the Pediatric Cardiologist(Dr. Orie) every six months to see how the valve is doing. Zachary will have to have this replaced in a few years and again when he is a teen. This is a condition he will live with for the rest of his life. It scares me to think down the road.

He is so strong and has a wonderful personality. We are so proud of him and we cherish every minute. Going through all of this has made me a different person. I appreciate life more and see the things we all take for granted in life in a new light. When you spend time in a Children's Hospital and see so many different illness it "humbles the most hardened soul". Unless you have walked that path nobody can understand how you feel. I thank everyone for their support and I cherish the new friends we had made along this new path. I also thank with all my Heart Dr. Eliot Rosenkranz and his wonderful team at Children's Hospital in Buffalo, NY. If he only knew how we felt (and so many other parents) he is a life saver in my eyes!!

Please help find a cure for CHD.... it's not fair these innocent babies have to go through more in their first years of life than some adults go through in a lifetime. .....We love you so much Zachary, you are our special BRAVEHEART. We pray you stay healthy and strong for the rest of your long life. Another special thanks to the PDheart, I have learned so much from so many great families all over the world!!!