Hi my name is Carmen. My son Julian Santiago is 5 months he was born it with a large Vsd and asd he also has tracheomalacia and a gtube. We live in Philadelphia but we been in the hospital in Delaware for the 5 months.
Hi fellow CHD families. I'm Yvonne and our CHD warrior, Bryce was born with complex single ventricle, hole between upper two chambers, hole between bottom two chambers, issues with the four heart valves, transposition of the great arteries. He was diagnosed at 18 weeks gestation and was born at 35 weeks 5 days. He has had three heart surgeries to reroute blood flow, the BTR Shunt, The Glenn (7-12-2015) and The Fontan (7-6-2009).I joined this online community in 2017 and life got busy.Our son's first time going to Camp del Corazon was 2014 when he was in 4th grade and he came back knowing that is not the only heart kid out there. This year will be his 4th attending Camp del Corazon for the summer of 2017!
He knows his heart is different, my husband and I told him that his heart is different and he needs to listen to his body and rest when he feels the need. Now that he's older (turned 12 in 2016), he understands more how his complex single ventricle heart and other heart defects work. His school has "his heart defect papers"--describes his heart, things to watch for especially dehyration, a letter from his cardiologist and info about Camp del Corazon( since he misses a few days of school to attend).We are blessed to be his parents and I look forward to "meeting" other CHD families here.