Me and My Shadow

My world is a bit unsettled right now, the earth ever-so-slightly tilted, making walking around somewhat treacherous.  I'm feeling better than I was last week, but still standing on shaky ground, waiting for the next aftershock.  It means that most writing goes straight to my paper journal, where I can sound like nine kinds of fool without the benefit of an audience.  But like Punxsutawney Phil, I need to occasionally pop my head out here and look for the sun.

Diabetes is much on my mind this week. 

Last week the FDA approved the use of inhalable insulin.   I'm still reading the research, so while I agree with Amy that this has great potential, we also agree that there is still much research to be done concerning long-term effects and accuracy of dosage.  Ellen has very clearly articulated her feelings in the title of her post, "Not in My Son's Lungs," while providing some great links.  Hope springs eternal in the hearts of mothers, so I'll be watching this story closely.

Sunday night I happened across a story on Dateline that made my blood run cold.  Ariel Botzet, an eleven-year-old girl with Type 1 diabetes, had died of cerebral edema caused by diabetic ketoacidosis.  Her mother Cheryl had been charged with first-degree murder, with the prosecution claiming that Cheryl had failed to manage Ariel's diabetes properly, which in turn led to her death.

Diabetic ketoacidosis:  two words that strike terror into the heart of any parent of a child with diabetes.  For many parents, their first exposure to DKA comes when their previously healthy child collapses seemingly suddenly and the ER doctors give them the double whammy-your child is in grave danger due to DKA, and oh, by the way, he/she has type 1 diabetes.  I've heard many harrowing stories of children taken to the hospital in DKA, with blood sugars anywhere from 500 to 1200.  Some of them died.

We were among the lucky ones; Liam never went into DKA.  Because he was so very young when he got sick, I took him to the doctor sooner than I might have with an older child, and he was stabilized fairly quickly after being admitted.  But he was very sick.  The night before we went to the doctor I Googled his symptoms (excessive thirst and urination, mostly) and learned that he was presenting the classic symptoms of type 1 diabetes.  As soon as I read that, I probably should have taken him to the ER, but I really had no grasp on how serious this was and how quickly it could all go to hell.  I got lucky. 

The day I took him to the doctor was a Sunday, so the walk-in hours at his pediatrician's office didn't start until 12:00.  He had thrown up once that morning, but I had no idea what a danger sign that was.  As soon as the intake nurse heard me describing his symptoms, we were taken back, which should have been another red flag to me.  He threw up again at the doctor's office, and when they checked his blood sugar it was well over 300.  Within 20 minutes of arriving at the doctor's office, we were on our way to the hospital.  He looked so tiny in that hospital bed, hooked up to the IVs that were sending both hydration and precious insulin into his little body.  I was terrified, but again, I had no idea how lucky we were.

Once he was stabilized, the crash course in how to take care of him began, and one of the things that was emphasized over and over was how important it was to check for ketones in his urine whenever his sugar was too high.  Ketones are the first warning of impending DKA, but if you don't test for them, you can't treat them.

Apparently Cheryl Botzet not only didn't test for ketones, she didn't test Ariel's blood glucose very frequently, either.  When Ariel was taken to the hospital, her hemoglobin A1c level was 16.1.  A person in good control is going to have an HbA1c somewhere around 6 or 7.  Numbers don't lie, and this particular number showed that Ariel's blood glucose levels had been off the charts for at least the previous three months.  There is no way in hell that this could have gone unnoticed if Ariel's blood sugar was being checked often.

At the very minimum, Ariel's bG should have been tested 4 times a day.  Liam tests 7-8 times a day; some people test as often as every two hours.  Just as with ketone testing, you can't treat properly if you don't test; that's Diabetes 101.  But the glucometer that was admitted into evidence showed that Ariel's blood sugar was checked only twice on that meter in the week before she died.  That's shameful.

The defense claimed that Ariel didn't take good care of herself, that she resisted testing and cheated on her "diet" by sneaking food.  That smacked so much of Blame the Victim that I thought my head would explode.  The bottom line is that while many preteens with diabetes are very active in managing their own care, no thinking parent is going to leave their eleven-year-old child solely in charge.  And as with everything, children learn by example.  If her mother did not make good diabetes management a priority, Ariel wouldn't have learned how important it was to check her blood sugar regularly; to count her carbs correctly in order to figure out the correct insulin dosage; to test for ketones when she ran high; to work closely with her CDE and her endocrinologist to get a handle on problems early; to know the effects of exercise and sick days and the crapzillion other things that affect blood glucose levels--all of the things that are critical to successful diabetes management. 

So if Cheryl didn't teach her the importance of those things and if Ariel, at 11 years old, was in charge of her own diet and of testing her blood sugar and administering her insulin with no supervision, then Cheryl Botzet was a neglectful mother who caused her child's death.

I was disturbed that Ariel's father Randy was not held in any way responsible.  He and Cheryl were divorced and apparently she had physical custody, but they were married and living together for several years after Ariel was diagnosed.  Presumably he was educated and trained in Ariel's care, just as Cheryl was, and when Ariel was with him, her care was his responsibility.  He told a sad little story on the witness stand about the last time he saw Ariel alive, the Sunday before she was taken to the hospital on Friday.  She had ridden her bicycle to his house that afternoon and he testified that she was "a little pale," but didn't mention testing her blood sugar.  Again, Diabetes 101-check the blood sugar, dammit.  Had he done that, Ariel might have seen a doctor sooner and it could very well have saved her life.  He holds some responsibility for his neglect and it's bothersome that he won't be held accountable.

And in a story with plenty of disturbing moments, this exchange between the reporter and Cheryl was most disturbing of all:

Dateline: Do you feel any responsibility for Ariel's death?
Cheryl: No.
Dateline: None, none whatsoever?
Cheryl: No.
Dateline: Why not?
Cheryl: Because I was a good mom. I did the best I could for her. I know I gave my daughter love, good care. And I’m not a bad mother. And I’m going to fight for my innocence.

This is incomprehensible to me; I don't know any mothers who would have answered that question like that (fathers either).  I cannot fathom the pain of losing a child, but I also can't wrap my head around the notion that I would suffer no guilt, feel no responsibility.  As the mother of a child with diabetes, I live every.single.minute. with the knowledge that this shitful disease could kill my child, and I do everything in my power to keep Liam healthy, to teach him good habits, to monitor what must be monitored.  And all of the parents I know, both in real life and in the Diabetes OC do the same.  And although doing all those things is still no guarantee, really, what's the alternative?

Cheryl was convicted of second-degree murder, but the judge granted a defense motion for a new trial, saying that she had made an error in allowing certain testimony.  The prosecution filed an appeal, and the case is under review in the Nevada Supreme Court.  Cheryl is getting a second chance for a future; it's achingly sad that her daughter will not.

Comments

[julia]

How did I miss that your son has diabetes? All this time I've been reading your blog and I didn't know that....

I commented on the case on my blog, too. I get pretty incoherent with rage when I think about it for too long.

[InterstellarLass]

That is just too sad about little Ariel. My grandfather has been a diabetic for over 25 years. Even I know just by looking at him when his blood-sugar gets too high or too low. I even take food away from my grandfather. He doesn't take care of himself, but if I'm around, I'm not going to let him cheat. And he's a grown man! Sounds to me like this woman is guilty.

[Jennifer]

Such a tragic story from so many angles. Stuff like this just makes me wonder why.

[kenju]

What a sad story. That child did not have to die, and her mother should have some remorse and guilt for what she didn't do.
Unbelievable.

[Jody]

Ugh. You make a damn pursuasive case, and I hope there are right-thinking folks like you on the next jury.

Like you, I can't imagine a mother saying she feels no responsibility for her child's death. If any of my kids died for any reason, if they were driving in a car with someone else altogether, I would still feel guilty about the choices I made that brought them to that place. And in this case! Ugh.

I'm sorry that Liam and you have to go through Type-I diabetes. No one should have to. Hopefully someday, someday soon, they won't.

[Ellen]

Did you ever consider that Cheryl Botzet's attorney advised her to say she is not responsibile, because any admission of guilt could be used against her in a future trial?

[Lora]

I read about the inhalable insulin and thought of you and Liam. I missed hearing about Ariels story; I just don't understand how people can be so irresponsible about the life of thier child.

[Amy]

If anyone would like to know more about Ariel Botzet contact me at specialprin118@yahoo.com I was engaged to her Father for 3 and a half years 2 and half before her death and 1 after.
Theres so much more to this story then the courts would allow. Not defending her Dad but we only seen Ariel 10 times maybe in 3 and a half years and never for longer then 3 or 4 hours at the most. Please contact me for any information anyone may have.