Dear Chicago Med,
Since you started airing, I’ve become a huge fan of your sexy doctors, your unusual dramas, and the accuracy with which you typically portray them.
When I saw the preview for last night’s episode last week, I knew then I may have to skip it because it hit too close to home. You see, people have judged us and how we handle our disease, questioned the validity of our diagnosis, much like the doctors did with the father in your preview. This happens a lot to people with mitochondrial disease, and I hoped the episode wouldn’t put the two together because they are already over-associated, but a few days later, I saw an article that the producers consulted with one of the top-ranked mitochondrial specialists, whom I’ve met and had the honor of hearing speak, and it offered me hope you would do justice to our disease.
The child came in unable to breathe. By the end of the show it was concluded she was faking her symptoms for sympathy from her father, who was grieving the loss of his wife who died from cancer. They had created some kind of co-dependency on each other. Somehow, his seeking care for her created a medical child abuse situation. This would have been fine, well, and good if your doctors had not prepped to intubate her. A child isn’t able to stop breathing to the extreme that she needs to be intubated by faking it. Furthermore, children aren’t able to fake not eating and drinking to the point of needing gastrostomy tubes and central venous catheters placed. And parents don’t have access to the supplies to place them, the skills or facilities, or the knowledge to do so from Google. Why were her other physician’s not consulted?
Your doctor suggested she “knew” mito. We hear this all the time. It’s a loaded, dangerous statement. In fact, when I hear it, it scares me because of scenarios just like what played out on your episode because hearing that someone thinks they know mito and seeing they know how to treat it are two different things. There aren’t many things more dangerous than someone with a lot of ignorance and a little power, as your show proved.
To the general public, they would think your pretend doctors truly knew mito too. Or that your producers did their research because they spoke to a top notch researcher, whom I love, for a few minutes. But what your viewers don’t know is that a muscle biopsy is no longer the gold standard for diagnosis as was suggested. What I want them to know is the dad was right. For a lot of us, anesthesia risks outweigh the benefits. There are other diagnosis methods, most of which are now superior in accuracy to the muscle biopsy. Genetics have come a long way, as has awareness.
But Chicago Med, it only took you an hour to throw us back years. You took the Justina Pelletier case, twisted it, sensationalized it, inaccurately portrayed it, and made an entire population of medically fragile people with a life-threatening disease look crazy. And as if that wasn’t enough, then you had the audacity to call our diagnosis a waste basket, bucket diagnosis. To say I was appalled is an understatement.
Mitochondrial Disease is not rare. It claims the lives of more children than all childhood cancers combined(1). It is also more common than Munchausen’s and Munchausen’s by Proxy(2). One in two hundred people carry a disease causing mutation(3). One in twenty five hundred people are affected by mitochondrial disease(4). Every thirty minutes a child is born who will develop mitochondrial disease by the age of ten.(5) And many children do not survive beyond their teenage years.(6)
That’s the disease you had the opportunity to portray. Those are the families you had the chance to show, to give a voice. It’s not too late to make it right. We in the mito community urge you to revisit mitochondrial disease. Bring this child and this story back. Mito symptoms come and go. Have her symptoms relapse. Educate the doctors and show they were wrong. We urge you to rescind the damage you’ve done by portraying this disease as a fictitious one.
(1)The Lily Foundation
(2)Cleveland Clinic - An overview of Factitious Disorders
(3)PRN News Wire
(4)Foundation of Mitochondrial Medicine
©2016 J.B. McGee. All Rights Reserved.