Six Months (Part 1): Autopsy

Today is six months to the day since Lizzy died, five months to the day since Cecilia was born. This past Thursday, we received and reviewed the autopsy results with the primary doctor on Lizzy’s case and the pathologist who did the autopsy.

The short version is that the autopsy didn’t reveal anything absurdly rare or that Lizzy’s body had an overly aggressive autoimmune response to the infection. Throughout the report, every piece and part of Lizzy’s body is listed as “normal” or “normal for age.” Except, of course, for the damage that was done to her body by the infection and by the surgeries and machines and interventions that took place in the course of trying to save her life.

It is the consensus of the doctors that Lizzy came down with Human Metapneumovirus, which caused viral pneumonia; opportunistic MRSA bacteria caused a secondary bacterial pneumonia, which led to overwhelming sepsis and septic shock, which led to multi-organ failure, which led to three cardiac arrests, which led to total brain death. I was told in no uncertain terms that, although they didn’t know it at the time, no medical intervention that was done to Lizzy from the time I brought her in to the emergency room could have saved her.

This means that Lizzy first manifested symptoms on Saturday morning and would have died without intervention by Tuesday. They put her on antibiotics, IVs, oxygen, and finally intubated her. They brought her heartbeat back three times, the final time after an 8-minute episode without a pulse. They put her on ECMO: a last-resort life support machine that breathed for her and beat her heart for her. They did heart surgery to make the ECMO work better. They put her on blood dialysis to try to clean out any antibodies that may have been attacking her in case her body was producing an autoimmune response. They put her on kidney dialysis because her kidneys were failing. Finally, they did multiple MRIs on her brain that revealed that her brain had swelled out of her skull, into her brain stem, causing total brain death.

And, if I’m understanding correctly, none of it ever had a chance of saving her. Because MRSA is just that fast. Just that aggressive. MRSA, I’m told, just overwhelms people and kills them, regardless of whether they are 2 years old or 30 years old. Children, however, have a magical way of disguising when they’re sick and compensating for it so that you would never know how very sick they were.

I remember one of the doctors during the endless question and answer sessions at the hospital began with, “I’m so sorry to have to ask you these things because I know you had a child in your arms this morning who was eating and drinking and talking to you.” Yes, Lizzy was still Lizzy, although sunken-eyed, blue-tinged, dehydrated, and dying. But she was still talking to me and drinking water and pushing away the doctors when they were trying to administer oxygen and IVs.

I am not sure what to do with this information. What do you say when medical professionals tell you that your child was just one of the very few kids who gets caught in a perfect storm of disease from which no medicine can retrieve them? Sitting with this information and remembering how fast it all was, and then knowing in addition how pointless it all was—it makes me want to die.

The truth is that living in this world is already too much, but when you have to live side-by-side with these facts, with a toddler that can have a runny nose on Saturday and be dead on Tuesday, is beyond too much. I don’t want to live in a place where these are the rules. Where death rules. Because that’s the uncomfortable reality that was communicated to me this past Thursday. Nothing and no one could have stopped what happened to Lizzy. The only thing that could have stopped it was if she had never gotten sick in the first place.

Human metapneumovirus is in the air we breathe. It is passed from person to person with a breath, a touch, a cough. MRSA lives on the skin of 50% of the human population, squatting, and ready to jump in as soon as defenses break down even a little. This is reality. This is what I cannot accept.

Who made these rules? How can disease and death hold such ultimate power over us? How is Lizzy not here anymore? How was her perfect little body so pure and whole and healthy one day and bloated, purple, stiff, and dead four days later? If you have answers for me, give them. I do not think that you do.

Reading Lizzy’s autopsy report was one of the hardest things I have ever had to do. My eyes kept passing over the words “normal” and “normal for age” in reference to the most minute of Lizzy’s body parts. And then I read the descriptions and commentary on what the disease did to that normal, perfect little body. And what the humans, pointlessly and fruitlessly fighting the disease, did to that normal, perfect little body. From the beginning, I have said that I should be grateful that the damage that was done to Lizzy’s body was done trying to save her life and not to take it. Because if there is a worse case scenario here, it would be to be the mother of a child whose body was abused and damaged because someone was trying to hurt or kill that child. Yes, that is worse than what I have had to endure.

But Lizzy’s death is unendurable nonetheless. I read the autopsy report, sobbing. And when I cry now, it’s shaking my head in a wordless, incomprehensible miasma of pain that is too comprehensive to articulate, incomprehension that is too deep to accept, and nonacceptance that is so powerful, it rages through me, choking off both breath and speech. What do you do when you encounter pain so profound that words are as useless as all the medical interventions that were done on Lizzy?

Well, if you’re me, you wallow in your own all-consuming pointlessness and write a blog post about it as if it matters, or you matter, or any damn thing that you do or do not do matters. And then you finish, and you close the computer, and you stare and you stare and you stare….because in admitting that you cannot live side-by-side with these truths for the rest of your life, you will be condemned as mentally unstable or suicidal, when in reality, you are the most sane of all.