I was wondering if anyone here has heard of TEF....trachea esophgeal fistula? This is one of my twin girls' main defects. She had surgery at 2 days lso has VACTERL Sydrome. She has crossed fused ectopic left kidney , ASD&Pulmonary valve stenosis both heart defects and a few others..extra rib, sacral dimple....Anways, sometimes I feel so scared and overwhelmed! She is so small too, 9.5 LBS at 4 months old, he twin sister is pushing 14 LBS. I'm tired of everyone worying about her weight when I'm trying not too!
It would be really nice to talk to someone who knows something about this!!!!