As many of you know getting a thorough diagnosis takes time. V was diagnosed with a TEF at birth. This prompted testing of all her many parts and it was ultimately decided that she had V.A.C.T.E.R.s syndrome.
V - vertebral anomalies (V has an extra rib on one side, a funny coccis and scoliosis - oh and several years later we found she was missing some adult teeth.)
A - anus (luckily for us this wasn't a problem)
C - Cardiac problems (V has plenty of those)
TE - the TE fistula (basically V's esophagus emptied into her trachea... or lungs)
R - renal or kidney (V doesn't have problem there)
So V's cardiac problems were extensive -
atrial septal defects
ventricular septal defects
tetralogy of fallot
a left and a right superior vena cava
double outlet right ventricle
transposed great arteries
Combined these are known as (the plumbing is as messed up as it can be and still work - and not very well at that)
The Cincinnati Children's has some good information.
In 1992 these seemed insurmountable (I heartily challenge anyone who has climbed Everest to top this - Cuz you CAN'T). In 2011, V is in college and is THRIVING. (Take that all you health professionals who looked at us with pity when we first took V home).