Getting Started!

Hello! This is our family story, mostly about our special gift from God, our son who will be born with AV Canal Defect and probably has Down Syndrome, but the other kids will be popping in here and there because they would never let us leave them out and because they are special gifts from God too!
So to get this started .....

I was 21 weeks pregnant and went for my first ultra sound. I am told... It's a boy. Then later that day my midwife calls and says the heart doesn't look right you need to go to our Clarion North in Carmel IN and get further testing done so...

2 weeks later...
We went for a level 2 ultra-sound , a fetal echo-cardiogram and to talk to a fetal cardiologist on Friday February, 11 2011  and this is what we found out.
Our unborn son has a BIG hole in his heart or technically ...AV Canal Defect.

What is AV Canal Defect?
Atrioventricular (AV) canal defect is a large hole in the center of the heart. It’s located where the wall (septum) between the upper chambers (atria) joins the wall between the lower chambers (ventricles). This septal defect involves both upper and lower chambers. Also, the tricuspid and mitral valves that normally separate the heart’s upper and lower chambers aren’t formed as individual valves. Instead, a single large valve forms that crosses the defect in the wall between the two sides of the heart.

What causes it?
In most children, the cause isn’t known. It’s a very common type of heart defect in children with a chromosome problem, Trisomy 21 (Down syndrome). Some children can have other heart defects along with AV canal.

What can be done about the defect?
An AV canal can be fixed. Open-heart surgery is needed to repair the defect. Unlike some other types of septal defects, the AV canal defect can’t close on its own. Medicines may be used temporarily to help with symptoms, but they don’t cure the defect or prevent permanent damage to the lung arteries.
The surgery will need to be done in the first year of it's life, most likely between 6-9 months.

What will my child need in the future?
After surgery your child must be examined regularly by a pediatric cardiologist. More medical or surgical treatment is sometimes needed.
Surgical repair of an AV canal usually restores the blood circulation to normal. However, the reconstructed valve may not work normally. The valve structures can leak or narrow. But, for many children, the long-term outlook is good, and usually no medicines or additional surgery are needed.

Because of my age and this defect we are looking at a 50/50 chance of him having Down Syndrome.
We would not allow them to do the amniocentesis because it will not make a difference to us weather he has DS or not, he is still our son and God chose us to care for him.
So we will not know for sure about the DS until he is born. The only definite we have is the AV Canal Defect.

We go back to have the level 2 ultra sound and fetal echo done again in 4 weeks.
I will update any new info then .
Also if anyone has any questions please feel free to ask and I will do my best to answer them.
In His name,
Ginger