Thursday, October 20, 2011


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).

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