My son Max was diagnosed with double outlet right ventricle with pulmonary atresia, asd, vsd, and dysplastic aorta the morning after he was born. (A simple pulse ox test confirmed our pediatrician's suspicion that something was wrong. It is not required in Kansas, YET!) CHD families has members who are working on it! He was flown to Kansas City Children's Mercy Hospital that day. He had his 1st surgery at 4 1/2 weeks. We were flown back up a couple times throughout the year and he was repaired on 12-12-12. After a little set-back he is healed and thriving! He will required pulmonary valve replacements for the rest of his life. CHD families sent us a nice care package in the hospital, matched us with a family with similar defects, and have a support group on facebook where I can ask my "heart baby" questions. We have spent some time with local heart families through CHD connections. We love seeing the familiar faces at events like the Heart Walk! This organizations main help to me was to help me not feel alone in this journey of everything "heart." :)
Our son was born with a complex congenital heart defect in 2008, and we found this organization through Children's Mercy Hospital in Kansas City. This organization provides support meetings every other month, carepackages to inpatients, and an online support system through email. CHD Families also organizes an annual picnic and team for the Kansas City Heart Walk. We have received invaluable support and information from this group, which has helped us be better parents/advocates for our CHD child.