I cant remember if it was the day of or the day after her first surgery that we received Brianna's ACC diagose, but here is a little of what happened.
Dr Seth came in to Brianna's room in PICU (pediatric intensive care unit) and told my husband Angel and I that he needed to talk to both of us alone. My mom, sisters and mother in law were visiting and he asked them to leave the room... my heart immediately sunk (this couldnt be happy news)...
I remember Seth perfectly... tall light skin blue eyes blond hair... I stared at him for a while afraid to ask what was going on...
He asked me to take a seat, and asked my husband to sit next to me and hold me. My immediate thought there was "terminal findings?" "what did they find out" "what's wrong with my baby" "is she going to die"?...
I sat down on the couch they provide for you to sleep on during your stay... Brianna was still sedated and asleep due to the anestetics (they were keeping her asleep until they could take out her ventilator)... I stared off through Dr Seth and my husband to look at my daughter one last time before hearing what I already knew and felt deep down in my heart that would change our lives forever...
Seth started speaking (in a gentle voice) I didnt want to hear him! "We received the results of the CT Scan that Anaheim memorial performed on Brianna before she was brought to CHOC"... I was nauseas I wanted to throw up and I was shaky... I wanted to tell him to shut up, but of course there was no use... I had to hear what was comming. I didnt look at my husband, I didnt look at Brianna, I didnt look at Seth... I stared into the floor... I didnt move... afraid of what was coming next.
"The scan shows that she has AGENESIS OF THE CORPUS CALLOSUM" (my mind was spinning and I was in shock, what is agenesis of the corpus callosum what the hell is a corpus callosum what is it and is it vital is this compatible with life will she die) I spoke shakingly and very quietly... "wh-at, d d does that mean?) he said "it means she is missing a part of her brain it is called a corpus callosum" MISSING A PART OF HER BRAIN KEPT REPEATING ITSELF IN MY HEAD OVER, AND OVER, AND OVER, AND OVER AGAIN... I fell to the floor, my husband didnt cry he was strong he picked me up and held me to his chest, I was crying... I then pulled the strength from I have no idea where to speak again because now there was another question in my head (I didnt dare ask "will she die" because I didnt know if I could handle that, so I asked the second question in my head... "can anything be done? will she have to have brain surgery"?...
Seth gave me time to relax, he told my husband to hold me up so that I could breathe. He then spoke. But I cant remember exactly what he said, I was hyperventilating at this point and I dont know how I didnt faint. I was crying, coughing gagging, and I just couldnt breathe.
He said "fortunately (good word) the part of the brain that she is missing doesnt require any intervention, it forms in the first few weeks of gestation, and if it doesnt form then it never will. Some people are walking around today and dont even know they are missing this part of their brain" (something like that).
I remember bits and pieces he then went on to talk to me about the differnt types of ACC, partial, complete, etc... and told us that the scan shows that Brianna is completely missing hers. This specific doctor told me then that it was best to have complete absense than partial absense (dont know about that)... he went on to talk about ACC varies widely, from mild to moderate to severe mental retardation, physical retardation and learning disorders. He said some children walk talk and function almost typically and some are severely disabled and never walk talk etc.
We just had to wait... and see. He then said they would do an MRI that night to CONFIRM the agenesis of corpus callosum diagnose and to make sure it was isolated and didnt have enlarged ventricles (sp) or fluid or any other anomality in the brain. (We got confirmation on the MRI results the next night she does have ACC no other brain anomality).
I ran out of the room couldnt take it anymore... I dont know if my husband and Seth stayed to talk but I ran out to the hall where my family was...
I fell to the floor against a wall next to the restrooms in the hall way os PICU...
I cried.
Cried some more.
I screamed.
I yelled.
Hit the floor.
and cried more.
My mother in law came to me and tried to hold me and ask me what was going on but I wanted nothing to do with them.
I later asked one of the nurses to write down AGENESIS OF THE CORPUS CALLOSUM for me so that I could go "google" it and find info. The info I found then devestated me... thank God I eventually found NODCC and the ACC blog and Angels Around the World
More to come in "Getting a Feeding Tube).
