Diagnosis

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).

Introduction (or About me)

19 years ago, my daughter was diagnosed with complex congenital heart disease (among other things).  I was 20 years old.  I had been married just over a year and lived in what seemed like a god-forsaken place at the end of the world.  It was a tiny town called Del Rio, Texas that was home to Laughlin Air Force Base.  And really - it was just the end of Texas if you went much further west you would be in Mexico. But for my purposes it could have been the south pole.


Over the years a lot of folk have said things like "I don't know how you do it" or "I don't know how I would handle your situation"  and some have said "You should write it down".  So I decided to write it down.  In the early years, I kept a journal - so I'll be referring to that from time to time - but most of this will be from memory.

Unlike most blogs - I actually plan on answering questions from readers.  So send in your questions if you have them.  I'm not a medical professional (and I don't play one on TV) but I can tell you that experience is the best teacher in the world.

Please remember that some of these memories are painful - and not just for me.  But be assured - if we got thru 19 years and managed to raise a pretty amazing young woman - you can too.

jen