A new story of apparent “diabetes neglect” has been in the news recently, one that turns the stomach and continues a trend we see every so often making headlines. This certainly is a topic I wish we never had to write about. It’s both depressing and infuriating! But there’s a need to highlight this issue because it could touch any family dealing with diabetes.

Yes, anyone.

The most recent instance in Illinois — along with those in Indiana and Wisconsin in 2013 — have brought some of the worst cases to light, and also spurred a discussion across the country about where exactly parental care for a diabetic child (or lack of it) crosses the line into neglect.

 

Death by Diabetes in Illinois

The most recent case making headlines involves an Illinois mother charged in the death of her 14-year-old daughter Emily Hampshire, who died Nov. 3, 2018. The D-Mom, 39-year-old Amber Hampshire, is charged with involuntary manslaughter and child endangerment on accusations that she hid the teen’s diagnosis from family and everyone else for years, failing to treat it and ultimately leading to the girl’s horrible death by DKA.

Media reports cite a search warrant and court documents that say Emily’s T1D diagnosis came in November 2013, but there didn’t appear to be any evidence or records that any insulin prescription had ever been filled. Apparently, police found diabetes care pamphlets, BG testing supplies and even “insulin delivery devices” inside the home, but at this point it’s unclear exactly what that entailed or how they obtained those items outside of the official Rx protocols. Reports also note that Emily had been hospitalized for DKA before in early 2018 but missed follow-up appointments, and the mother apparently worked at the daughter’s private school and had told staff there to disregard her medical plan “because it was wrong.”

Wow.

This is clearly a case of willful neglect, and it makes you think twice about school officials and educators requiring an actual physician’s sign-off before any on-site diabetes care decision can be made.

 

Diabetes ‘Healing’ by Prayer in Wisconsin

Then there’s the high-profile legal case that found its way to a Wisconsin Supreme Court ruling in July 2013, when justices there ruled against two parents who chose on Easter Sunday 2008 to pray for their 11-year old daughter, Madeline Kara Neumann, rather than take her to the doctor to treat her type 1 diabetes. Although Dale and Leilani Neumann didn’t belong to any organized church at the time, they identified themselves as Pentecostals and believed there are spiritual root causes to sickness. Although all of their kids were born in a hospital and vaccinated, Dale believed he’d once been cured of back pain through prayer and the couple decided not to seek treatment by doctors anymore, instead believing that “putting the doctor before God” would heal.

Well, that belief boiled over when their daughter died from untreated type 1 and DKA. Court records show that Madeline had been sick for weeks before she passed, with gradually worsening D-symptoms including exhaustion, dehydration and weight loss. The day before she died, Madeline slept all day, and early that evening her legs were “skinny and blue,” and that’s when her mother emailed for friends and family to pray.

At the trial, her parents testified that they didn’t sense any danger in her condition and thought prayer could heal her, and some of the court records show testimony saying they believed that healing was happening on Sunday morning just hours before their daughter died. It was only after Madeline stopped breathing that the mother’s sister-in-law, living in California, called 911 after hearing about her niece’s condition. The paramedics on the scene did a blood sugar check, but the court records show it was too high for the meter to register an actual number.

The Neumanns were convicted of reckless homicide in two separate jury trials in 2009, but their sentences were put on hold while the parents appealed. They argued that a state law provision, Wis. Stat. 948.03(6), protects prayer healers and that their due process rights were violated because they didn’t know criminal liability was possible if the faith healing failed to save their child.

In the court’s ruling, 6 of 7 of the state’s justices determined the law was narrowly written and didn’t protect parents in all cases of child abuse. If there’s a “substantial risk of death,” then the parents could be prosecuted. Basically, the court majority ruled that the Neumanns had a duty to seek medical care because they should have recognized the danger posed by the DKA symptoms.

Only one justice disagreed, interestingly bringing up a point that many in the D-Community know well: diabetes and DKA symptoms can vary, and both the general public and even the medical profession is known to miss or misdiagnose these potentially-deadly signals.

The lone dissenter, Justice David T. Prosser, wrote a 23-page opinion (starting on page 73) that plainly says this case isn’t as clear-cut as it sounds. He pointed out that the larger issue is how parental “duty” will be interpreted in future cases, whether it’s a parent confronted with possible DKA symptoms or some other non-diabetes illness. Prosser was the minority view, emphasizing the question: Where does the line stand, especially in a world where DKA can mirror so many other illnesses and a diabetes diagnosis is sadly missed by many medical professionals?

The D-Community both online and offline lit up over this case, outraged over how parents could allow this to happen in today’s world, when the effects of DKA and untreated type 1 are well-known.

The law may dictate here that the Neumanns relied too much on faith healing, but what about other parents who have no idea what diabetes symptoms look like and just miss the diagnosis and don’t call a doctor? Could a similar suit be filed against them?

Of course it’s all a matter of severity, because once your child becomes lethargic and their legs are turning blue it is clearly time to seek medical help!

But some less severe symptoms aren’t always caught even by licensed medical professionals… so where do we draw the line when it’s not just about seeking emergency care when an issue is apparent, but rather about imposing a standard that any parent know the nuanced symptoms of undiagnosed diabetes or early-stage DKA?

 

An Indiana D-Mom’s Case

Case-in-point, from the Midwest:

A county prosecutor in northern Indiana filed felony child neglect charges in June 2013 against a Fort Wayne woman accused of withholding insulin from her 9-year-old son, who then slipped into a coma.

We could only find one news story online about this, although D-Dad Tom Karlya wrote about it too. Unconvinced by the newspaper story, we obtained a copy of the prosecutor’s charging documents and was pretty shocked to see how flimsy the case appears to be against 27-year-old Mary Gene Markley.

Apparently, officers determined she was lying about checking her son’s blood sugar three times a day because they checked the Accu-Chek Aviva meter she had and it hadn’t been used since 4 days earlier… There was no mention of other meters she may have used. Another adult that she’d been staying with since mid-April did tell investigators that she’d never witnessed Markley giving the boy insulin or checking his BGs, and that she hadn’t seen any “insulin items” in the trash. The boy had been ill and was vomiting leading up to his being taken to the hospital, where the police were called.

So when things got rough, with the vomiting, this mom did bring her boy to the hospital. But just based on those few points above, the mother was accused of “withholding insulin” and charged with criminal neglect.

For the record: Later that summer in August 2013, the Indiana mom pled guilty to a lesser felony and received a suspended, 1.5-year sentence (i.e. probation) from the county judge. So it seems the courts did hold her guilty of neglect at least at some level. 

But it could also have been just a case of an uniformed parent struggling with a lack of resources and knowledge, and maybe also frantic and bewildered by her son’s symptoms. Someone believed D-Neglect was happening, even though there was no real hard evidence that the mother intentionally crossed that line.

And that could be worrisome.

 

Concerning for Any D-Parent

This last case calls to mind others like the Tennessee case where school officials seem to have called Child Protective Services and reported “neglect” because D-Parents allowed their child to go to school with blood sugars in the 200s (with the “officials” having no understanding that this may have been post-meal or pre-exercise), and blaming parents because their D-kids sometimes eat candy bars or have low blood sugar reactions.

There are numerous misunderstandings and frivolous cases out there, brewing against D-Parents who haven’t done anything wrong except in the eyes of ignorant bystanders. Still, some of these parents are being accused, called to court, and some have even been ruled against by judges.

Some years back, low-carb guru Dr. Richard Bernstein mentioned in a webcast that he’d been contacted by a law firm specializing in medical malpractice, saying that some endocrinologists in parts of the country were telling D-Parents that their kids could taken away if they don’t try harder to “normalize” blood sugars and get A1Cs down closer to ADA standards.

Can you imagine?!

It seems unlikely that Social Services would actually take a child away after investigating such charges, but with all of the legal hype and “duties” being imposed on parents these days, who knows? Take for example the recent “Great New Year’s Eve” server outage that Dexcom CGM users experienced, where many were frustrated and scared by the unexpected holiday server crash, that cut off their access to their kids’ BG data streams. Backlash gone awry could have lead to lawsuits and even accusations against parents for mismanaging their kids’ care. 

Barring violent illness in which there is “clear and present danger” to a child, who draws the line on “neglect” anyway? Could parents be held to task by ADA guidelines that say we should be “in range,” or some other standard imposed by a panel of legal and medical professionals?

Where do we, as a society, draw the line between protection and unreasonable behavior…? Frankly, it makes me concerned for the safety of some D-parents who may be wrongly judged.

Agree? Disagree? Or feel like punching someone just now? Can’t say that I blame you.