Monday, January 26, 2009

What Really Happened to Daniel ?

Since Daniel passed, the doctors have been telling us that likely, he had an unexpected disturbance in heart rhythm and that this rhythm was incompatible with life. We are being told that there was nothing we could do to anticipate this, and that this "happens sometimes". We have not really bought this. The doctors have been focused on cardiac testing of our other children in order to prevent another such occurance, and this indeed is what has been taking our time.
When Daniel went into the bathroom, one second he was talking to us and the next, there was a gurgling sound. It was incredibly rapid, almost as you would turn a switch. When his father and I entered the bathroom, we found him on the floor, but his skin was warm and pink, not at all the way I am accustomed, as a former critical care nurse, so seeing someone in full arrest. In addition, as we turned him over (he was on his abdomen initially) his eyes were half open with one facing outward left and the other outward right. When I tried to position him for mouth to mouth and ultimately CPR, his neck was taut. Normally, a person in arrest can have their head tilted back with one hand. It was effortful for me to position him for CPR. Both his father and I believed that some type of seizure occured. The doctors were undaunted, stating that once the heart stops the brain indeed responds with seizure-like activity. Still, we wait for autopsy results while processing this terrible loss.
After Daniel died, for several days and especially during the funeral, we felt his presence. I can't be more descriptive than this, it was simply a feeling that he was with us and knew what we were doing, and wanted to be near us to comfort us. I have had some dreams where Daniel has spoken to me since, but they have been largely symbolic and brief.
On Sunday morning, the 18th, our son Matthew told us he'd had a dream. (It would actually have been on Saturday the 17th) He said that Daniel had come to him in a dream. Daniel told Matthew that he had entered the bathroom, sat on the toilet, felt nauseated, and stood and vomited in the sink. Then his vision went blurry and he passed out on the floor in front of the sink cabinet. Daniel did not think it was his heart. He told Matthew that he thought it was something in his brain. In the dream, Daniel proceeded to tell Matthew that his brain had been a great focus of the most recent part of the autopsy. He described how his brain was "cut in half" and that there had been great discussion about something that had been found in the middle of it. Daniel seemed fine and was relating this, just as he would have related an episode of Stargate. He wanted us to have this information so that we would not be quite so cardiac obsessed.
On Tuesday the 19th, we spoke on the phone to one of the pathologists who has been the liaison with us. (Normally, there is not communication with them. A report is issued to your doctor and he explains it to you.) I asked if she'd found something, and she said yes. I said, "It's neuro, isn't it ?" and she reponded, "Yes". She told us that a large pineal cyst had been found (which is located in the back center of the brain) She indicated that a pineal cyst which impedes the flow of cerebrospinal fluid and causes seizure and death is exceedingly rare, but that this is a significant abnormal finding. I told her what Daniel had Matthew on Saturday. With all the mettle a female pathologist must have, she seemed unsurprized.
With this, I began as much research on pineal cysts as possible. Small pineal cysts are a common finding on many autopsies, in fact as many as 41 %. For many people, they are completely asymptomatic, but for others, there may be intermittent headaches. Rarely, a cyst can become large enough to necessitate draining, especially if it begins to cause nausea or visual disturbances as it begins to impede cerebrospinal fluid (CSF) circulation through the ventricles of the brain. Only two other people have ever been documented to have died from a pineal cyst. When a cyst creates these cataclysmic difficulties, it is referred to as pineal apoplexy.
We are sad. We remember only twice in three months Daniel complaining of a headache. Both were when he got up in the morning. I attributed both to his allergies and gave him Claritin, but told him to let me know if the Claritin did not work. In both cases he was better in a half an hour. I now realize that these headaches may have been due to increasing intercranial pressure and that they improved only because he was up and around and had better drainage but not due to Claritin. I also now remember that he did once complain about his eyes being tired and a little blurry, but he would spend considerable amounts of time on his laptop computer, not only doing schoolwork, but creating animations, in which he was extremely gifted. I resolved to take him for an eye exam after Thanksgiving because he might need glasses, although I fully expected his eye irritation to be of allergic origin, as it is with the rest of us. I can only remember his mentioning nausea one or two times in about three months, generally when we drove in the car. He has been prone to feeling carsick all of his life. So we now begin the process of being grateful to God that Daniel does not seem to have suffered in association with his passing, and that somehow, he didn't really experience symptoms sufficient for him to alter his life, complain or worry. We never saw anything that indicated to us that anything was wrong. He was active, happy, and for two weeks I had off immediately before he died, we spent a great deal of it together. I am grateful for the time we had together but, in all, we remain heartbroken.

Note written one year later: Subsequent pathologists, on studying the autopsy data, albeit world experts on neuropathology believe that Daniel's pineal cyst, which was unruptured, was too small to have caused his death. They are still unclear on a cause of death.


  1. Alexandra - when it happens that quickly, and without any real warning, i believe that can only be done by God. i sincerely hope that i am not offending you with any of these comments.

    your friend,

  2. Kymber, You could never offend me. You are a gentle and loving soul, and this always comes through in all of your posts.

  3. Alexandra - what a beautiful name btw - if i ever do offend - please tell me so that i can correct my offense immediately. that is always my greatest worry - that i won't know that i have offended and therefore will not be given the chance to correct my actions or words. thank you my friend.


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