The following is a letter to a doctor from a mom of a child who died…..it is in recognition of Blog Week and today’s topic of “Our medical team will be reading today’s blog, what would you say.” This is a fictitious letter and not based on a specific true story (exactly) but it is based on real stories we hear all too often and two that were shared with me. Something needs to be done. I warn you, it’s a rough read—-but I am THAT angry that it has happened and will happen again.
Dear Doctor,
I came to see you two weeks ago and you told me that my eight-year-old child had the flu. This seemed odd to me at the time because she had been throwing up for almost a week. She lost seven pounds. She had a strange odor about her. Something was definitely not right.
You put your arm around my shoulders and told me that it was a horrendous flu season. I begged you to check something else, can we run tests, can we send her to the hospital. You told me that having only one child makes me a tad over protective and I should relax and wait out the flu. I asked many times should we do other tests.
You sent us home. I asked one more time, “are you sure?” You reaffirmed that all would be okay.
My house is empty now. The last of my relatives just left. My daughter’s funeral was today. She died the night you sent us home. When they rushed her to the hospital, they told me she was in full-blown ketoacidosis. That is when someone has type 1 diabetes and without insulin in their bodies, their blood sugar rises and rises until it is too late. A simple blood test or a urine stick would have indicated she was in real trouble.
I asked you. I pleaded with you. I begged you.
You were right; she was my only child. She was my everything. She was a miracle birth. To have any children was a miracle for us. She was our whole world.
No stepping up ceremony, no junior high school, no high school, wedding, anything—no firsts.
No first holding hands, first crush, first kiss. It’s all gone.
I cannot write anymore.
A mother knows sometimes…….when someone else trusts you as I did, please listen to them on the outside chance they may be right; or may be even partially right.
I will never have a night’s peace again. My days will be full fearing the night.
I wanted you to know.
—A Mom
I am a diabetes dad.
The following is a letter to a doctor from a mom of a child who died…..it is in recognition of Blog Week and today’s topic of “Our medical team will be readingtoday’s blog, what would you say.
21 replies on “BLOG WEEK ENTRY 1: A Child’s Death…….Why Didn’t You Listen?”
I am a bit confused. At the beginning it says “This is a fictitious letter and not based on a true story (exactly) but it is based on real stories we hear all too often and two that were shared with me”… But the at the bottom it says “The following is a letter to a doctor from a mom of a child who died….” Is this based on an actual event that occurred or a made up letter. If it is a made up letter, what is the point?
Confused.
It is a made up letter and that point is explained clearly. The letter is not real, the stories are. As stated; the first entry for Blog week was what we would want our medical professionals to read if they read this blog. I would want the medical professionals to read why they need to make sure the person in their office may not just have the flu.
Too many have been diagnosed this year with diabetes at death—-and THAT is the point.
So basically what you are saying is this is a “fake” letter based on the thoughts of parents who got together and shared stories and then someone decided to write this based on those stories??
So this DID happen to someone who shared their story?
Sorry for the questions, the intro is just a bit misleading because you say it is a fictitious letter based on true stories..
This has happened to far too many people. We took our son to the doctor for flu, etc. several times. I finally decided to go to urgent cares. First said he had a uti. No. Finally, got to one who had diagnosed him in 5 minutes. The ambulance came and my 18 month old baby who had been non stop drinking peeing and throwing up was now in PICU fighting for his life. He was given a 20-30 chance of making it. The nurse told me they had just lost a 12 year old boy who was brought in too late. I had another pediatrician’s appt set up for the monday after this (friday) and I was told by medical staff that he would have never seen monday. His brain was swollen and they kept waking him to make sure wasn’t slipping into coma. It was a nightmare. We were lucky.
Mary, I think you’re missing the point, the letter may be fictitious, but this happens all the time, every day because Dr.’s seem to disregard our gut instincts about our own children. Many children are not being diagnosed with Diabetes until it is too late because “they” the(medical community) is not doing blood and finger pokes in the office at well child check ups etc. etc. That is the point of Tom posting this.
I wrote Mary meant Misty.
I believe the point of this blog entry is to educate and raise awareness. Though this entry may not be based on a particular case, this type of event happens all too often. More doctors and other health care professionals need to be made more aware of they symptoms of Type 1 Diabetes. These symptoms are too commonly written off as a “bug” or “virus” and parents are told to take their child back home, that “it will pass”. My daughter was one of the fortunate ones; we took her to a quick care clinic because she was really run down. I thought maybe she had low iron as she had just gone through a growth spurt and gotten tall and skinny. She had an appt. scheduled with her dr. coming up in 4 days so I wanted to get the clinic to order her blood tests so her dr. would have the results when we saw him. At the clinic, I happened to mention that my daughter had been thirsty the past couple of days. At that comment, the nurse immediately tested my daughters blood sugar. She was in DKA and we rushed to Children’s Hospital. She was lucky, they caught it early. I shudder to think what would have happened had we waited for her scheduled appointment, or if the health care professional we dealt with had been less knowledgable.
Too many children die each year because they aren’t diagnosed in time. It breaks my heart because it is SUCH a simple thing to test for. A simple finger prick or urine test would have saved those lives.
That definitely is a tough read. As a mom, I have beaten myself up for 2 years now for being the one to tell my husband that it was just the flu when I did not take my son in until it was almost too late. Luckily, I got a triage nurse at the ER who had been recently trained in Type 1 Diabetes and she recognized it in just the knick of time. However, he still went into a coma but he awoke 24 hours later without any obvious damage other than the dx of type 1 diabetes. (Of course, there could be longterm damage to his body from the DKA). He was transferred to the Trauma Center Pediatric ICU because this small satellite hospital was not equipped for pediatric icu patients with diabetes. I was told that we were lucky that she was on duty because many triage nurses are not trained in Type 1 in these smaller satellite hospitals. I have been able to forgive myself because I am not a doctor or nurse and had no history or education in Type 1; however, I would expect any medical professional in pediatrics to be better educated. We feel very blessed and fortunate that our nurse was educated. Thanks for raising this topic! One life lost is one too many!
I know of many close calls and as you stated; it is not for you to know, you ar enot a medical professional and THAT IS MY EXACT POINT. We all beat ourselves up because of the ‘What if…..’–I just cannot imagine that a test is not done as procedure when ANY thought of the possibility is there, or the chance of probability is there. Thanks for sharing your story.
This should never happen. How hard would it be to include a 5 second finger prick during a sick child check up. A fictitious letter is a strong visual tool to help address this very important topic.
My point Jeanette and thank you for saying it clearly.
This was almost me. I took my son to the doctor in December and told the pediatrician that my son had lost weight, was wetting the bed(he was 9 at the time), had excessive thirst and had weird breath. He tested his urine said he was fine and told me he probably just had a bad virus. By March he had lost more weight(he was skinny to begin with, he now looked gaunt and had large circles under his eyes) and he had started having chest pains. When we got to his office he of course realized that by this time he was in DKA and sent us immediately to the ICU. Why did he not do a blood test the first time???? I believe he knew that he had messed up since he never came to the hospital to check on him but just let the on call in house doctor treat him. He had been treating him for 6 years and it was very upsetting to me that he didn’t care enough to at least call me to check on how we were doing. My son was in the hospital for over a week and the only call I got was from his nurse telling me I needed to find a Endo doctor since the one that they usually used was no longer taking diabetes patients!! I now drive two hours to make sure he has a great endo team and have transferred him to my family practice doctor. The worst thing about this was that this ped doctor also tried to charge my insurance over 1000 dollars for doctor visits to the hospital!! It was very upsetting to have to deal with all this while we were newly diagnosed but now I know that the “team” we have is the best for us. I just pray that other kids don’t die because he doesn’t listen to the next MOM who comes in with a child in the beginning stages like we did. Hopefully he learned from this, but I sincerely doubt it.
Thank you for sharing what must be a horrendous story to remember…….thanks for sharing.
I understand where the letter is coming from, sometimes doctor’s refuse to listen to us parent’s when we know in out gut that something is wrong with our child. Only a parent can comprehend where the medical system fails by not listening. I have been through the same issue with my girls endo, and I have been told to my face that I’m the one with the deegree not you, and when the endo told me that I responded to her do you want to keep working or do you want me to sue you, you choose. Deegree or not it only matters when you take parents who know their children into account. They need to listen and be less judgemental.
I tried to be very clear up-front what this was about for that very reason. Thank you for writing.
When you realize you have a doctor who doesn’t listen to you, you find another doctor. Your intuition is best ALWAYS!
Tom wonderful blog post! There is one error though. You say the insulin rises and rises until its too late. I know you meant glucose but others may not.
Thanks—that typo has been corrected—of course I meant blood sugar—-thanks for keeping me on my toes.
Hoping that more doctors read this and understand that those symptoms just might be T1.
thank you tom!
Below is the letter I should have written to my sons Doctor:
Dear Dr.
You saw my son two months ago for his football sports physical and you passed him with flying colors. So, how could it be that less than 60 days later he nearly died after we left your office?
I told you during his visit that I called my insurance company’s advice nurse several times over the weekend. I told them I thought he has the flu, but something felt different. I asked how should I know when to take him to the hospital or wait to see you on Monday morning. A few questions were asked and answered and I was told to give him a teaspoon of water every 5 minutes to see if he could hold it down. I was told that If he was still throwing up 48 hours later to come see you.
We arrived promptly on Monday morning. He was so weak he could barely walk. He threw up while we waited for you. We talked about his symptoms and his 30 lb weight loss over the last two months, you examined him, and you ordered a urine and blood test. The nurse drawing the blood had a VERY hard time finding a vein since he was so dehydrated. I smiled, and held his hand cringing as she poked and prodded to find a drop of blood. By this time, he didn’t say anything because he had a hard time talking because he mouth was so dry.
You called us back in your office to say the urine test was back and he had sugar and protein in his urine but his blood test hadn’t come back yet. My son said he was incredibly hungry and so thirsty, he wanted to know if we could go get something to eat and drink while we waited for the blood test results to come back. You said okay. You even told us about a couple of close by fast food places. We walked to Wendy’s fast food restaurant across the street from your office. He had a cheese burger, fries, finished a 64 oz fruit punch, and refilled it as we set out to return to your office. We barely stepped out the door and he was shaking so bad he nearly fell down, and threw up several times as we made our way back to your office.
We quickly found the bathroom for him to throw up again and then I came to see what you could do to help him. Things were confusing to me at this point. You nervously said he had diabetes and that you thought you had some insulin around there but didn’t. You said you had called the nearby Children’s Hospital to discuss the results and that they will be waiting for us at the ER. You also told us that the waiting room at the hospital was very busy that day and we might have a long wait. I asked if the situation was emergent, should I go right away or do we have time to get a computer game or something to keep him busy while we waited. You said I could go home and gather things before I went to the hospital.
We went home, and got a bottle of water and a Gatorade. He was so very thirsty, and the bottle looked like it only contained a little bit of sugar. I had no knowledge of the disease called Diabetes. But there looked like so little sugar listed on the label I figured it would be okay. His mouth was so dry he couldn’t talk much and he wanted it terribly bad.
We arrived at the Hospital. You were right there were a lot of people there. But… I barely was able to introduce my son to the admitting nurse and someone came to get him. I was confused. I thought we’d have to wait our turn behind all those waiting people. As he turned around the corner with a nurse holding his arm, a woman Doctor yelled…. What the hell is that in his hand! The Gatorade was quickly taken away. More blood tests…. IV fluids… The Doctor said she couldn’t believe he was able to talk or talk based on his test results he was being transferred to ICU. His blood sugars were somewhere in the 800’s or 900’s I don’t remember now. I was told he had to be admitted to ICU because they had to slowly bring his blood sugar down so he didn’t go into shock. And had to monitor other things I didn’t understand. He was in ICU for two days, and then in the medical floor for a week.
Knowing what I know now, I have these questions:
1. Why did you give us directions to the fast food place across the street when you had a urine test result showing high levels of sugar and protein? He drank a 64 oz cup of fruit punch, and ate carbs after the test results you had taken.
2. Why didn’t you know he was in DKA and tell me to go directly to the ER?
I want you to know he was near death when we arrived at the ER. Please educate yourself or the next child may not be so lucky as my son to keep his life.
Sincerely,
T1 Diabetes Mom
We lives in Korea when my son was diagnosed. He had been losing weight, drinking a lot, falling asleep in class. It was actually at a parent teacher conference regarding the falling asleep that I first took a good hard look at my boy, dozing at the desk, that I realized what was really wrong. I left the school and took him straight to the bare bones army clinic on my base, it wasn’t even staffed by MD’s, but by combat medics. I demanded a glucose test. They rolled their eyes at me! Said it was too late in the day, they were understaffed. I insisted. They eventually tested him and it was unable to be read, it was so high. They brought another meter. Same thing. Tested via blood draw. Same thing. They didn’t even have insulin IN the clinic. My poor son lay with a saline IV for a couple of hours until they lined up a life flight helicopter to take him to a Korean hospital in Seoul.
Intuition, especially a parent’s, is EVERYTHING. Unfortunately not every parent has the ability to seek a second opinion. If I hadn’t been such a mama bear that day? Who knows what would have happened. It should never EVER happen!