The following is a patient story from one of our community members, and one that highlights the challenges some community members face with Munchausen by Proxy accusations.
Written by Nicole, mother of Eliott
This is a difficult topic to talk about, as it still affects us occasionally. In 2022, we wrote an article in a newspaper to be heard by the municipality in our fight for our middle son, Eliott.
Our son Eliott suffers from severe idiopathic ketotic hypoglycemia. We felt that we were not being heard regarding the severity of the diagnosis and what we needed, including psychological help. It was repeatedly stated that Eliott did not have type 1 or 2 diabetes, so we couldn’t apply for these resources.
After talking to several people around us, we decided to write an article in the local newspaper sharing our story.
( “Excerpt from the article”) :
Ups and Downs
“The diagnosis has turned the family’s life completely upside down because Eliott needs to eat every two hours. Therefore, the little boy hates food, and at times, he simply refuses to eat anything because he’s not old enough to understand that long-lasting carbohydrates are necessary to stabilize him. I have reduced my working hours because Eliott is too tired to go to after-school care. However, the municipality insisted that we should try after-school care, so it dragged on.
We have been unsuccessful in getting psychological help. We need to sit with a psychologist together and unload. Today, we can only confide in each other. Extra laundry, extra waste disposal, and purchasing various things for Eliott are putting a financial strain on the family.
The couple have had conversations with leading experts in complex hypoglycemia at Odense University Hospital, Denmark. They are concerned that the family is collapsing, and this has resulted in a shared inquiry to the municipality for additional support. Shartly after this inquiry, a healthcare assessment of Eliott is being initiated, and in four to six months, the exhausted parents will be informed if they can see a psychologist.”
Shortly after the article was published, the municipality called us to inform us that I (the mother) had been anonymously reported for faking and fabricating Eliott’s illness.
The report claimed that I ensured that Eliott always had low blood glucose when he was in public and that I acted very slowly to manage and correct the hypoglycemia. According to the report, I was able to fake and fabricate the ketotic hypoglycemia because I am a nurse by profession, and works at a diabetes department at a hospital.
They accused me of faking his diagnosis of idiopathic pathological ketotic hypoglycemia to seek attention. Furthermore, the report claimed that I too was neglecting my other two children. Based on this, the municipality accused me of having Münchausen by proxy.
Taking it all in
As you can imagine, my whole world fell apart… My children are my everything. I didn’t know what to do, what to feel, or what would happen next to me or my family. As a result, I isolated myself and had to go on sick leave from work. I felt like everyone was looking at me and pointing finger. I didn’t dare to react – or not react – when my sons blood sugar dropped, so I left all of Eliotts IKH-care to my husband for quite sometime. I felt paralyzed by fear…
For the several months we had conversations, interrogations, and more with the municipality. Information about us, and my capabilities as a mother, was gathered from everyone around us. Fortunately, we have the best support system of daycare providers, preschool, school, and doctors who stood up for us and fought with us. They made statements from one hour to the next. They were even willing to witness and protest in person at the family court to express their support for us as a family and how I always care for my children and never neglect them.
Everyone around us was shocked when they found out about the accusations. Our family and friends said that I shouldn’t hide because that’s what those who reported me wanted to achieve – but… it was easier said than done.
After 4-5 months in hell, I was cleared from all accusations, and the case was closed. We thanked everyone who helped us during those months of hell, and we could now begin to look forward. However, this experience has left a deep mark on me. I still fear many things. I prefer not to go to the doctor, and when I have to take the children, I always make sure my husband is with us. I prefer not to have meetings with the municipality anymore, and worst of all, I still feel that people judge me and look at me strangely when I’m in public.
Because it started with an anonymous report, we don’t know who it is. My mind often wonder who is was, and why they did this to me. Unfortunately,I have become very distrustful. One of the positive outcomes of this whole ordeal was that we were finally granted psychological help.
Despite only being 9 sessions, it was a start. But now, it wasn’t just about the fear of losing my children due to IKH, but also the fear of losing my children due to Münchausen By Proxy accusations. This fear still lingers.
Stepping into the light
I subsequently decided that I was done hiding. False accusations can destroy a family. But it shouldn’t be my family!
From there, I was able to stand tall, and started to get even more involved with Ketotic Hypoglycemia International, fighting to get closer to the causes of idiopathic ketotic hypoglycemia.