My name is Dawn Siepmann. We live in a very small, close-knit town in the Northwest corner of CT. This photo was taken of my family in January 2003 at the Hockey Hall of Fame in Toronto CA. From left, Michael age 15, my husband Barry, RJ age 10 and myself. One of the best times in our lives, when I need a hug from my son, I look at this picture. If we only knew then what we do now...
I had never heard of an AVM until June 5, 2003. My very active, very healthy 11 year old son collapsed in gym class from a ruptured avm in his brainstem. He had no prior symptoms at all. Never any headaches, or complaints out of the ordinary. He was at the doctors office just one week before for a rash.
He had sudden pain over his eye and screamed for help. His gym teacher rushed to him and within a few moments he was getting weak. She helped him to the floor as students went to get the nurse and a teacher who is an EMT. He lost consciousness quickly after.
EMT's arrived within moments but at this point he was posturing and had one pupil dilated, his breathing had stopped so they had to start bagging him. He was taken to a local hospital where they confirmed the bleed and readied him to be taken to a children's hospital 1½ hour away for surgery, since they could not do it there. He could not be airlifted due to weather. While waiting for transport they inserted a breathing tube and his heart stopped. He was shocked and revived.
The trip to the hospital was uneventful but long. Upon arriving he pretty much crashed before surgery and was brought back again. Unfortunately at this time his second pupil dilated. They did surgery and removed the avm that was at the base of the brain in the brainstem. His heart stopped a couple of times during surgery but he came out. We waited and hoped for signs of recovery but he remained in a coma with only reflexive movements.
My son died on June 24th, although he was probably gone on June 5 moments after his avm burst. I know more about comas and the brain than I would ever have wanted to. I write this because I searched nearly every story for a similar case to try to find answers about pupil response, coma response etc. Our doctors told us that even if we had known his avm was inoperable because of location, and that where it was you would rarely see symptoms. RJ lived life to the fullest up to the moment he died.
I am willing to answer more detailed medical questions if you find yourself in a similar situation.
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