The pathologist on Sarah's case told us to expect a final report next week. Eleven months of questions, observation and testing will be condensed to written words: what to issue as her cause of death. I know that "what to issue" doesn't sound as overwhelmingly confident as "determine cause of death," but at this point can one believe that a diagnosis is more than speculation? It is eleven months after the fact; any conclusion must be taken with a grain of salt. If the cause of her death had been cut and dry, we would have known months ago. A diagnosis at this point is more a result of a process of elimination rather than absolute knowledge. The doctors at Children's have eliminated a laundry list of disease, events and possibilities.

We took Sarah to Children's Hospital on that fateful day in September. If we had taken her to any other hospital, I expect they would have assumed a diagnosis soon after her death, that of meningococcemia. But Children's is an amazing place. I believe that it is their research bent and innate desire to heal children and teens that has kept Sarah's case active this long. As I have written in other places, not only is Children's the best place to take your kids when they are sick, it is also the best place to take your child when she is going to die. I truly believe this and feel grateful that the doctors and institution are part of our community.


Children's concluded that Sarah never had a chance in the ER. They diagnosed her with a rare complication of hypothyroidism, which they believe took her life- myxedema coma. Because of evidence they found post mortem, they concluded that Sarah went undiagnosed for a long time with this degenerative disease. Anyone who knew her would attest that Sarah had boundless energy; she never showed any signs of lethargy- the classic hypothyroid symptom. Other symptoms have only been considered in hindsight. There was nothing dramatic that warranted a trip to the pediatrician's office, nothing that warranted notice. The doctors suggested that perhaps Sarah had thyroid issues so long that her body compensated for it. With no dramatic weight gains or lethargy, the disease went undetected.

... we now have proof that Sarah was not just a one in a million kid, but one of a kind


When we arrived at the ER, she showed classic signs of a massive blood infection. As her body went into shock, the medical staff treated her classically. But her body did not respond to treatment. Talking to the attending physician later, he noted how unusual that was. She was totally lucid and talkative until the moment they needed to anesthetize her, which was extremely unusual. The treatment that they gave her did not work, now speculating because it was the wrong treatment. As her body broke down, her brain stayed active.

They explored many possibilities- meningococcemia, toxic shock from tampons, a spider bite, and even intentional poisoning. But nothing panned out. They found none of the toxins or bacteria one would expect to find. They investigated, as did the CDC. Nothing.

But they did find problems with her thyroid. Although the pathologist said it was central to the event, which he called myxedema coma, other doctors since have called his diagnosis ridiculous because her symptoms would have been different. It sounds as though there was pressure to diagnose. I have lost some confidence in Nationwide Children's Hospital because of this, but not enough to not take an ailing child there. Because Sarah declined so quickly in the ER, there is no reason for us to believe that she could have been saved. There just was not time for a correct treatment be administered. There just wasn't time.

 

So whatever Sarah's cause of death, we now have proof that Sarah was not just a one in a million kid, but one of a kind. Anyone who endured her passions of Science Olympiad and the Periodic Table, or who listened to her endless spirited repetition of Finding Nemo lines, knows this is the case.

 

Note: We received the final report on 9/10/05, just three days short of a full year. A well respected physician who read it commented that it was one of the most thorough pathology reports she had ever read, so John and I are confident that the pathologist tried, just did not have enough evidence. Of all the things noted on it were her nails...."painted with speckled blue, red and silver toenail polish." I know she would have been glad that they were noticed. Sarah... we will forever love you.

What happened- written 9/04
A discussion with the attending physician 1/05


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