Sarah balancing a feather at the Circus
Yesterday we met with the critical care physician who led Sarah's treatment team at Children's Hospital. I am glad we did, as it shed more light on what happened the day she died. Sarah had the best team Children's had treating her. That is something we never questioned. But her case still leaves them perplexed and they still talk about at meetings four months later; there are still no definitive answers.
He said that Sarah presented with very classic signs of sepsis, an overwhelming
blood infection. I have no doubt that they treated her appropriately for
what she had. If you have read other things I have written about the day,
you will know that the treatment was fast and furious. I don't think it
would be fair to question why they didn't use this drug or that drug,
at this point. John and I are both satisfied that they were treating her
prudently without the benefit of 20/20 hindsight.
But the doctor said that Sarah did not respond to the treatment, which is what makes her case different from others. There was another marked difference with her case. He could not get over the fact that she was quite lucid and talking . That kept him hopeful and intensively focused on the fact there was a chance of saving her. Most patients at that stage become non responsive. While she was being treated, she talked to John and me. She even responded to the medical staff. Apparently, this is quite unusual. But if there was one thing that Sarah could do, it was to talk. She talked incessantly. If anything was going to give her a second chance at life that day, it was her runaway mouth, because it showed them that although her body was shutting down, her brain was holding its own.
As you know, Sarah twice went into cardiac arrest.. The first time it was a surprise to the medical team. They were close to putting her on a machine to bypass her heart to mechanically improve circulation. But they never got that far. The doctor said something interesting about the second arrest. I mentioned to him that perhaps the second arrest was a blessing; I can't imagine how messed up Sarah would have been by that point. He said something to the effect (paraphrased): So many parents want us to continue to do things to their child in circumstances like this, not for their child.
As much as we miss her, I have to think that at that point it was the
best thing for her. There is no question, especially after talking to
her physician; they were doing everything they could FOR her. This experience
not only has affected her friends and family, it has had a profound affect
on the Critical Care Department at Children's and both paramedic squads
who cared for her. I regularly see where computers at Children's have
accessed Sarah's memorial page.
So what caused it?
No results have come back positive, which
leads the doctors to only guess what happened. She definitely died from
what was a massive blood infection. Although the sepsis is consistent
with known causes that could be treated, her response to the treatment
was not. Her doctor said that he had never seen anything like this before;
she did not respond at all and so quickly demised. They surmise that it
might have been a virus, as no bacterial or toxic evidence has been found.
They have no proof of a virus either, but apparently viruses are very
difficult to identify.
One of two things happened: either the virus (if it was a virus) sent
her immune system into a tail spin that could not be recovered by conventional
therapy, or her immune system went topsy-turvey (for lack of a better
medical term) fighting off an infection. We don't know whether the cause
was something environmental, intrinsic to the pathogen or even something
within Sarah, herself. As the pathologist told me, she either had something
so rare that we may never identify it, or her reaction to it covered up
what it was. So the cause of the reaction is unknown, as is the organism.
The only known is the result.
So the theories that it was meningococcemia, toxic shock from a tampon
or a toxic reaction to a bite or other toxin are merely that, theories,
and ones that have been thrown out.
We may never know the underlying cause of her death so may never get medical
closure. But, the pathology department at Children's and the CDC continue
to examine tissue and fluid samples and develop theories. Since we can
not have Sarah back, I truly hope that the research being done on these
makes the scientific difference in the world that she wanted to make.
At this point, what more can we hope for.
Again.... thank you for your continued support.