In the comments to my final diary of 2024, elenacarlena suggested I write about medical advocacy including how women tend to be disrespected by doctors. Now I am not a woman, but my mom is and I do have a couple of stories involving her interactions with my doctors when I was a child where she was dismissed while advocating for me.
I should start these stories by saying how after I was diagnosed with the rare genetic condition I have, my mother went full bore into learning everything she could about the illness and how to manage it. Luckily, the first geneticist I had came out of Johns Hopkins and was part of an early group of researchers and clinicians dealing with lysosomal storage illnesses and put me on a path to try and manage the disease as best as possible before there were any treatments. Because of his involvement with the illness, he knew of a parent support organization that began down in Maryland but was now headquartered on Long Island due the current president living in Hicksville about 30 minutes from where we lived. The story of our involvement in that organization will have to told another week because it is deserves its own diary.
This geneticist had us make appointments with a number of different specialists in his hospital including a cardiologist. Interestingly, most of the doctors he suggested were younger fellows in the beginning of their career. I would see most of these doctors for the next decade plus including one I saw for more than 30 years. The cardiologist was a woman in her late 20s, and like most married women in their 20s, became pregnant and went out on maternity leave a couple years after first seeing me. Excellent for her, not so great for me. The person who took over her patients while she was on maternity leave happened to be the chief of pediatric cardiology at the hospital; a ridiculously arrogant man. Originally on the recommendation of my geneticist, I would get a full echo-cardiogram at each of my semiannual appointments to carefully watch the progression of my heart function especially the valve function as valve replacement surgery is typical for people have my illness. When I went for the appointment with this man, he refused to do the echo saying it was unnecessary to do it every 6 months. Not only did he “know” it was unnecessary but he referred to my illness using a name that had been dropped more than a decade ago when genetic and enzyme testing showed my illness and another illness were not the same illness even though they presented similarly because they involve different enzymes and different genetic mutations. He and my mother went at for a good ten minutes until he sort of acquiesced and did “half an echo.” (To this day, I still have no idea what that means and no doctor has ever been able to explain it.) After having the technician perform the test, he came out to tell my mother “maybe I should have an echo every 9 months” which in arrogant doctor speak means “I was wrong but I am not apologizing or saying you were correct.” Unfortunately for me, my regular cardiologist got pregnant again a couple years later meaning we had to see him again. It didn’t go much better.
The other story is from when I was an adolescent. I had wanted to have my outie belly button turned into an innie due to teasing when I would go swimming at camp or with kids from school. We looked into doing it and went to speak with the chief of pediatric anesthesiology. My mother brought a bunch of material that had been written about my illness and how difficult intubation and extubation can be for kids with my illness including issues with the anesthesia itself. These materials were written by the foremost experts in my illnesses. He basically yessed my mo to death when she explaining things to him and go over the information. I was in the office sitting right there at the time. Anyway, I decided against doing it, not because of him, but just because I did not really want to have an unnecessary surgery,
As it happened, just after the new year when I was 17, I developed an impacted umbilical hernia and had to have the surgery in a somewhat emergency fashion. Wouldn’t you know it, he was the doctor would was picked to handle the anesthesia. Unfortunately for me, I developed a cold the morning of the surgery and things went a bit sideways because the surgery couldn’t be postponed. It got complex to say the least. This particular story does have a happy ending. Later that year, my dentist wanted to remove my wisdom teeth before they became impacted. The necessitated surgery again. Having had a decent experience when he actually had to do the anesthesia, we decided to use the peds chief again. This meeting could not have gone any differently than our first meeting. My mom’s first question after exchanging pleasantries was, “How are you going to do the anesthesia?” He said, “very carefully” LOL
In coda to the second story, the day of the surgery, I was featured on the front page (picture included) of the science section of The New York Times of which the doctor was a subscriber. When he came out to start an IV for me, he jokingly said he can’t kill me now. LOL
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