website is dedicated to our son Zachary Joseph, who
was born on March 27th,1998. Zachary was born with the
congenital heart defect, Tetralogy Of Fallot with aquired
pulmonary atresia. We share our story of our son's
Congenital Heart Defect as we try to promote public
awareness of the number one birth defect in children.
27, 1998 is a day we will never forget for the rest
of our lives. I was in a car accident and eight months
pregnant. We were advised to come to the hospital to have the baby monitored. To our
surprise he was in Bradycardia, a very slow heart rate.
We were told I would have an emergency c-section. We
were so scared and excited at the same time! We are
finally going to meet our precious little life living
and Mary were married on Sept. 7, 1996, one month before
our first anniversary we found out we were going to
have our first child. We were so happy and could not
wait for the arrival of our baby boy.
8:05pm we became the proud parents of our 5.1 pound,
18 inch son. Love this strong can not be put into words!!
A few hours later we were waiting to see our son, instead
a neonatologist sat on the foot of my bed and gave us
the heart wrenching news. Our baby needed heart surgery
ASAP for a CHD called Tetralogy of Fallot.
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!!!