22 Responses

  1. Mary Dexter
    Mary Dexter July 17, 2013 at 6:15 am | | Reply

    Why are the parents culpable, but the medical professionals are not?

  2. amber
    amber July 17, 2013 at 8:59 am | | Reply

    I’m not sure that I understand the undertone of sympathy for the Neumann parents in this article. What they did was heinous, regardless of their “faith”. If any parent did that to their child, then they should absolutely be charged with a crime. Rational human beings cannot just stand idly by and watch another human being (one that they brought into the world and nurtured up to that point) die a horrible and painfully slow death. Even if they are ignorant of the symptoms of DKA, at the instance where she was barely breathing, turning blue and slipping into a coma, they should have taken her to the doctor. They chose not to help her. (And no, praying is not helping, regardless of what they said.) People capable of letting their child die shouldn’t be allowed to remain a part of society. Simple.

    For your second point, there is a tremendous difference between “not being able to get my child’s BG under control despite trying hard to do so” and “not caring if my child gets insulin, food or medical care”. Doctors and teachers are supposed to watch for signs of neglect, and I’m sure that an otherwise happy child with BGs that are difficult to control might not set off as many red flags as one who is constantly tired, skinny and sick.

    “One where an uninformed parent was struggling with a lack of resources and knowledge, and maybe also frantic and bewildered by her son’s symptoms.”

    Being ignorant of symptoms is not an excuse to allow your child to die. That is just as neglectful as someone who doesn’t bother to do anything in the first place.

  3. Kathleen Weaver
    Kathleen Weaver July 17, 2013 at 12:48 pm | | Reply

    There WAS a court case in recent years, when a medical practice was successfully sued for malpractice because they missed a diabetes diagnosis and killed a young patient. Pretty easy to find, because what actually lost the case for them was a procedural error: one of the specialists in the practice was blogging as Dr. Flea. The child’s case files had been on this doctor’s desk which he why is pulled into court.

    If an entire medical practice can miss a diabetes diagnosis, so can a family.

    I agree that it is horrible whenever a child dies of diabetes, but thank god it doesn’t happen with every child is touched by it, as it used to.

    I think we need to know more about both cases before we make a judgement (and I am still horrified that I was reading that doctor’s blog and his practice missed that case).

  4. Celeste
    Celeste July 17, 2013 at 2:59 pm | | Reply

    Having my daughters’ pediatrician miss diagnosing my daughter with Type 1 at age 7 for a month after going in once a week and calling every few days…to have her finally end up in ICU very close to a coma I am quite sympathetic with the pain and horror of the above cases. And now trying to manage a 17 year olds A1c is traumatic in its own right. The D community needs to support their people. We are the only ones that understand the hardships of this disease.

  5. Meri
    Meri July 17, 2013 at 3:06 pm | | Reply

    There was a medical professional at FFL that stated she was called by a school nurse saying she was planning to turn a family in to Child Protective Services because the parent gave a child with T1 a pop-tart for breakfast.

    All thought provoking for sure.

  6. Dana
    Dana July 17, 2013 at 3:25 pm | | Reply

    We almost missed my son’s diagnosis. He was close to death when we got him to the ER. He was simply sick. I had no clue that it was serious. I just knew he was vomiting, tired, and drinking a lot. It was very scary when he became unconscious at the hospital while we waited for them to do blood draws. But they didn’t think it was anything more than a virus as well. As a matter of fact, I was the one who had to tell them to check sugars and they didn’t think it would be necessary. So I can definitely get the not knowing.

    I do think that neglect seems to be present in these cases but at the same time, we don’t know all the details. Diabetes is hard. Parenting is hard. And parenting a diabetic is extremely difficult. Its hard enough going through all we have to go through without worrying about loosing our children to someone who is hyper vigilant.

  7. Skye
    Skye July 17, 2013 at 3:45 pm | | Reply

    I think “thought provoking” is the right term here for sure! Mike, I think you did a good job writing about a sucky subject, especially one thats so potentially divisive.

    I can kind of see both sides of both examples, not that I agree with the parents’ actions, but I can see how there’s a slippery slope especially when belief-systems are involved.

    And the second story… I was dx’d at age 9 (in 1991, so things were less “stringent” back then), but under medical guidance, injections and BG was only twice a day, and my parents chose the low-profile, no big deal approach to it. Had another adult been in the house, I don’t know that there would have been anything to see aside from my kit on the bathroom counter. The story presented is pretty weak on evidence, and while there could very well be intentional neglect involved, if that kid had the same Dr I had growing up, there would be more than enough “lack of resources and knowledge” to put at least 10 of him in the hospital.

  8. MOira
    MOira July 17, 2013 at 4:53 pm | | Reply

    This is such an important blog. I hope it is shared and shared again. Listen, as the mother — and I do think of myself as a dillilgent, caring, good mother — whose daughter went into TRUE DKA from lying about bgs and faking readings and faking pump readings, I sometimes think: Could i have gone to jail? Trust me, it never, ever happened again and thank GOD my daughter fessed up before it was too late for her but she was in bad shape. RIGHT UNDER MY NOSE. Think it cannot happen to you? That’s the first mistake that can lead it to happening to you. i was so arrogant.

  9. Vicki
    Vicki July 17, 2013 at 5:55 pm | | Reply

    I think it is important to get the people involved story. We don’t know if the media got it right. There are so many factors that need to be considered. Every situation is so different. You can look at a medical chart and get a picture which changes when you talk to the patient and family.

  10. garidan
    garidan July 17, 2013 at 6:50 pm | | Reply

    The Neumann parents knew their daughter had diabetes, thus I don’t understand your point. Not giving insulin to a type 1 It’s like you push your baby down of a 10 floor building to prove your faith in God.
    The Indiana D-Mom’s Case is about having enough proof, she could tell where she bought insulin, for example.
    Regarding your “bigger Concern for Any D-Parent” you are right, I’m a D-parent and would prefer being judged by other d-parents, if it were the case, because they only could know and understand the hurdles of taking care for a D1 baby.

  11. Lonnie Thaler
    Lonnie Thaler July 17, 2013 at 8:02 pm | | Reply

    This is a sad story but it will be a lesson for those who are not aware of the seriousness of this sickness. I don’t think the parents wished this to happen. I know they were devastated for the death of their child. Prayer can bring miracles but most of the time, it’s just prayers. :-(

  12. Mary Dexter
    Mary Dexter July 18, 2013 at 7:50 am | | Reply

    Usually your stories have a link on Facebook. Wondering why this one did not?

  13. Toby
    Toby July 18, 2013 at 6:04 pm | | Reply

    Mike, I appreciate the post (all of your posts for that matter). I think it best to remember that isolated cases are simply anecdotes, not a representation of the whole. Sensationalism makes news. I am a D-parent and realize I am held to a higher standard than a non-D-parent. Under law, I believe courts would hold to, “What would a reasonable person do?” Stupidity leading to the death of your child disguised as faith fails the reasonable person standard. You carrying that argument over to sensationalized court cases where parents might pass the reasonability test is an interesting thought exercise, but I do not believe it resembles our country as a whole.

  14. Dan
    Dan July 20, 2013 at 7:37 pm | | Reply

    Mike – I agree with your overall point, about there being a slippery slope when judging a parent’s care of a diabetic child. For your second example, it seems like more details would help before anyone was able to make a reasonable judgement about culpability. But, like Amber, I absolutely disagree with your sympathetic portrayal of the faith healer parents. One commenter mentioned that the parents knew their daughter had diabetes. Even if they did not, and did not know of the symptoms or seriousness of dka, it appears apparent from your description (which I assume is supported by lots of facts from the case itself) that their daughter was in serious condition, and any reasonable person of healthy mind (which it sounds like these parents were) should have realized the seriousness of the situation. My god, the sister-in-law on the other side of the country had to call 911! I would think the rights of the child to live would take precedence over the rights of the parents to follow their spiritual beliefs. That is the crux of this case, not just a question of whether the parents did a good enough job. They didn’t do any job taking care of that girl! Let’s not confuse many questionable situations with a clear-cut case of child neglect.

  15. NGA Parents of TID (18 yrs experience)
    NGA Parents of TID (18 yrs experience) August 10, 2013 at 12:01 am | | Reply

    In the spring of 1997, our TID dd was in second grade, seven years old, and attending public school. Just over a year out from her original Dx, it was a very tough year with many obstacles created from ignorance on the part of the principal and his unwillingness to be flexible to our dd’s needs. The school nurse was no more helpful. At the time, our dd was on the most recent therapy consisting of MDIs and strict, scheduled meals. Each month, I attained a copy of the lunchroom menu and marked the exact quantity and which food she was allowed to have. It worked well, and the lunchroom ladies were very helpful and sweet. One day I walked into the nurses office, finding it empty with the door wide open, lights on, and an opened file laying on the desk marked in big dark letter with our dd’s name. On top and in plain view of anyone who may have walked in there, there was a page long letter accusing us of child neglect!!! Among other things, she wrote that we did not properly manage dd’s disease, we did not properly carb count, and that we allowed her to have a doughnut for breakfast! Heart pounding, I took the letter to the teachers’ workroom, copied it, returned it to the folder, drove one mile home, called my dh and read it to him, took a moment to calm down, gathered my 3 inch binder of diabetes handouts and other resources, and drove back to the school marching straight in the principal’s office with no introduction. Dropping the binder and stack of books on his desk, I handed him the letter, and quickly let him know I did not appreciate finding it. His initial response? To scold me for looking at it. I enlightened him that ANY ONE who walked in that room could have read the same thing about me–any teacher, parent, staff, etc. clipping through my ammo (the resources), I proved to him that the nurse had NO clue what she was talking about. I found out that she had been retrieving the monthly lunch menu after I sent it in to the cafeteria manager each month and reviewing it–and making changes to it. He (the principal) also said she had already talked to him, and he had told her “it was none of her business if [we] did not want to take proper care of our child.” As it turned out, she had already called DFACS!!! So, yeah, it happens. And I can assure you we were right on top of giving dd the best care we were equipped to give. This is just one of the several injustices we experienced back then. PS- our pediatrician also missed the diabetes. For months leading up to diagnosis, I questioned him. He never checked her bg, saying only, “she would be MUCH sicker, if she had diabetes.” (I knew the symptoms, but did not realize I could have attained a meter myself.) Well, she did get much sicker, and it was our local GP who Dx’d her. Thankful to be eighteen years out, though we still have our moments.

  16. Tammy
    Tammy March 15, 2014 at 7:46 am | | Reply

    I am a single parent of two type 1 children…my youngest had great numbers…my teen has had tons of trouble…cps was called because I kept having to take my child back and forth to the e.r. I did what you should do…I sought meducal help…one hospital gave my child three types of insulin with her meal…I questioned it…they gave it to her anyway…we left the hosp by discharge against my wishes…we left and her numbers dropped non stop until we ended right back I. E.r. they shipped her back to the same hosp…they called cps…said I have mumchousens by proxy and my children are in foster care…I have medical depositions where the doctor states that humin n is only an eight hour insulin..which they gave her while hooked to a sugar bag…14 hours later she was given 30 units of lantus which the doctor says she never gave her…yet the records show two nurses sigmed off that it was given in Her left arm…then the doctor states that she didnt mean for her to get that but even if itnwas given…thay 30 units would not make a difference. The court I am fighting is a cps case and they no nothing about diabetes. …nor does the judge…they are assuming thT this hospital did nothi ng wrong…that they would not make. MistKe and blame me for it…they Re Ccusing me of having munchUsens by proxy because I took her to the hospital so many times….I have the deposition whrer the doctor has said thing thT we all know are inaccurate…but the court says they need a childrens endo to disprove this hospitals statements…the cost to get a doctor to look at her records…to prove im innocent is 5 to 7 thousand…I work a minumun wage job..but have managed to save one thousNd so far…bit the judge already sId im quilty due to the hospitals “proof of knowledge”…I see my kids once per week now ….supervised by state workers….im appealing this decision and prayingnto have saved enough to pay a doctor to look at the records and to listen to the recprded deposition ….before an appeal date so I can show I am innocent. Ive also been told that they may press criminal charges as well…sentenced to prison and or psych facilities becauze I took her to the e.r…trying to figure out why her b.s had gone haywire…I guess I just loved her too much….I took her back to the e.r. every single time we had bad numbers or keytones….this all happened shortly after a re-call of a medtronic pump part…I was too afraid to trust the pump after it was recalled…and she wS put on lantus and nova log…. then three weeks later… they switched her to humilin n. And humilin r…..but we still had trouble…suddenly im accused of trying to hurt my child…. I had my six year old at 6.2 a1c at this same time…yet my 14 yr old was all over the place….i am devastated .how can this happen…its like im In a bad bad movie…it is so unreal!!! I had one psychological eval done for the court….but now they want another one done by someone else…this evaluation will be given by someone who will be given the hospitals opinion of me before I go In to be evaluated…they will get to read that the hospital had a child abuse specialist who decided I have munchausens..they will read that cps and the judge ha e decided im quilty based on me taking my child to the e.r….after she reads all of thos b.s…..she will give me an evaluation to see of she agrees or not….the other evaluation doesnt count because she did nott get to read all the bad things that they wrote about me….I guess they say “doctor shopping” is illegal….but its ok for cps and the judge to “psychiatrist Shop” if they didnt like the answer from the other psychiatrist…. ive sold all I have…gotten rid of any extras like t.v. etc. Trying to save five grand to get anotber doctor to look at my case…any advice out there?

  17. Cheri
    Cheri October 4, 2014 at 1:11 pm | | Reply

    My daughter was incorrectly dx’d and treated for stress related to divorce for almost 9 months before I walked into the ER with her. She had lost almost half her weight and was close to death or at the very least coma when I took her. Some of the symptoms were missed because of more than one child in the home (ie water jug always empty) others because my child is not a complainer. Do I think the first child should have seen a doctor? Yes that is why mine was finally caught in the ER. But ignorance is abundant and children who are being cared for are being taken away by judges who don’t understand that not every child can have blood sugar levels between 80-180 24/7. Moral of the story Diabetes sucks and it’s no ones fault when your child has T1D. :(

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