No, the emergency room staff did not consult with any endo before administering those procedures.  She was in a life threatening state (breathing pathway blocked among other things), therefore the ER staff immediately did the anesthesia and endo tube, THEN called the hospital endo (an adult one).  An anesthesiologist gave the anesthesia, so apparently that specialist did not know about how CAH patients need a large stress dose of cortisol before anesthesia is given.  Another horrible part, I was not in the ambulance during the 27 mile trip to the hospital, I had to round up the other 3 children (all at home) and drive there (including the little surviving twin, had no one else to watch the kids and could not leave them alone).

There are several sets of twins, both with SWCAH or CAH whose parent’s post on the board.   Yes, definitely sad, life will never be the same, but our family has no choice except to go on in life.  Lots of lessons learned in what happened, and changes were made via health professionals to make sure another child doesn’t die like this, but I had to push real hard to get that job done.

When a person is in a life threatening state, med personnel can legally, and it is their job to do necessary procedures.  Else they can get sued for not doing what they should have, and if they have no idea to "not" do some procedure, who can blame them for trying to save a life in the way they have been taught to save a life.  CAH patients need the extra cortisol for certain procedures, else shock & heart failure can result, and it did happen in our case.  Ambulance paramedics do not carry the injection, and here in Missouri, they need permission from a doctor in order to be able to even give it.

Anne