K.M.
I am also a heart mom! Congenital Heart Defects (CHDs) are the #1 birth defect--1 in 100 birth. Obviously some are more complex than others. We also found out during our 20 week anatomy scan. Many children that are born with DS also have heart defects--I had no idea. Our son has a complex congenital heart defect, but does not have DS. Technology and medical research are amazing! The survival rate for Truncus Arteriosus is pretty high--close to 90%, I believe. I'm not sure if that changes if you mix it with DS. Also, support groups for CHDs and DS are out there and are a wonderful resource!!
I was completely devastated when we got the news. I never thought a baby could form or survive if the heart was imperfect. Boy, I was wrong! Our little guy is missing most of the right side of his heart--he doesn't have a tricuspid valve, pulmonary artery, or right ventricle. He also has a hole in the top of his heart between the right and left atrium. He had 3 palliative open heart surgeries to redirect blood flow, so the left atrium and left ventricle do all of the work--he basically has 1/2 a heart. His first surgery was at 11 days (he was discharged from the hospital at 1 month old). His second surgery was at 6 months (he was in the hospital 5 days--yes, only 5 days after open heart surgery!! ). His 3rd surgery was 8 weeks ago-he is 5 years old. He was discharged after only 9 days in the hospital (his surgery was over 9 hours). He started kindergarten 22 days post-op. AMAZING!
Meet with the pediatric cardiologist. Get a second opinion. (We lived in Kansas City when our little guy was born and we got our first opinion at Children's Mercy in KC and flew to Miami Children's for our second opinion. We had the first two surgeries in KC). Find out who is the "best" at fixing Truncus arteriosus and who is the "best" at working with children with CHDs and DS. We loved our docs in KC, but ended up going to Boston Children's for his 3rd surgery. Boston is #1, Children's Hospital of Philadelphia (CHOP) is #2, and Texas Children's (TCH) is #3 overall.
Feeding issues are common for heart kids. Our little guy was on a feeding tube for 9 months.
Find a support group. Find other parents that have walked miles in your shoes.
We do a lot with the American Heart Association. Jack was the guest of honor last year at the Kansas City Heart and Stroke Ball. They made this short video (6 minutes) for the Ball--it gave people a small glimpse of what Jack has endured.
http://www.youtube.com/watch?v=4JxiO2Oc5Go
HOPE! You have to have HOPE! I would never have imagined Jack would be as 'normal' as he is...
((HUGS)) I'm happy to answer any questions or help you find a support group!