A layperson’s signature alone could never authorize experimental surgery on a child under joint guardianship under Maryland or Indian law.
A new citizen of the U.S. herself, a housewife who never was a nurse or doctor, that was my “informed consent.” That was used to sign my tiny body away. She had only known me for two months, didn’t share my blood, didn’t know my history, and had no training in medicine. I was in the US under the Guardians and Wards act of 1890, India, my 3 guardians were Sister Maureen, Dr. Samuel Eugene Long, and Hendrika Ram Long. Within 10 days of arrival I was already being tested on. 5 months on US soil Johns Hopkins got ahold of me and the experiments on my tiny body started. They began with overdosing me, then 12 days later chemically poisoning me. The doctor guardian, the one who was an actual doctor, never signed a single medical document. Not one. Sister Maureen may have known, but probably didn’t know the extent because she could have paused the adoption process or put in clerical oversight. It was Mrs. Long’s signature, over and over again, that gave strangers in white coats an impression of consent to overdose me, inject me with drugs, and cut into my body for science, research, and experimentation. But they chose to falsify records than get oversight to do the experimentation. Being under guardianship, they would have never gotten approval and since I was documented as an "important case" legality didnt seem to matter much to them.
As they tried to intubate me, I had to be restrained, my little body was trying to make them stop, I was saying stop the only way I could, but instead I was tied down. 3 times unsuccessfully they tried to intubate and had to change to a smaller instrument, finally succeeding with intubation on the 4th try. This brought on anoxia and a partially collapsed lung that wasn’t notice until after surgery and then listed only as “monitored”.
A stranger signed away my body and mind.
When the doctors filet opened my back the doctors saw my nerve endings were already damaged, fried. That should’ve been the stop sign. Instead, it became the excuse for the white coats to keep cutting, keep experimenting, keep using my tiny body for research. And when I came out, I wasn’t the same toddler.
Before that surgery, was described as “very intelligent”, “happy healthy child”, “very fast learner”, and “knows 50 Hindi words, learned 50 Hindi words within 3 weeks” I didn’t lock up or retreat into my own brain for protection. Afterward, my body started doing things I couldn’t control— blank stares into the void because the only safe place left was inside my head. A droopy eye. I wasn’t having “side effects.” They were new injuries.
Mrs. Long saw it. She watched me come back worse than I went in. And even with that in front of her, she kept signing. The doctors’ own numbers slid from fifty percent success rate on the first experiment. By the 3rd experimental surgery the success rate plummeted to 20%. Every time the odds went down, the damage went up, and still the papers got signed. Signing my little broken body up for more experiments. That wasn’t informed consent. Not all three guardians only Mrs. Long who was targeted as the layman to interpret complex nerve grafting surgery to others who never signed off on it. No court gave permission; the hospital did not check my adoption status or more likely just didnt care. The consent forms signed by Mrs. Long always were invalid. The experiments were done illegally. She was handing me back to the white coats. Back to being tested on. Back to the torture.
I was barley 2 years old. Exploring the world, just beginning to learn my new surroundings. My right stump was flaccid—no movement, no muscle, but yet I could still move it at times. My hips joints were popping in and out of the hip, and yes, that needed to be fixed. But the rest? The rest was for the experiment. For the white coats to make their career off of my body.
The notes try to cover this up by excluding certain documents from the records, concealing what was done in obscurity. At the time, I didn’t know what was being done to me. I only know it now, piecing together medical notes decades later, and realizing the numbers told their own story: no tranfusions for nerve harvesting or grafting, E. coli resistant to drugs they kept using, anestthisia notes not dates, discharge summaries not signed, operitive dates dictated two year after surgery, white out, the list goes in. Back then, I only knew the dizziness, the silence, the drugs, the way my body came back changed. I still will not drink apple juice because that was their choice of substance to drug me.
Still, the white coats would come. With their knifes and pain. Still, her signatures appeared. As if I didn’t matter. Because I didn’t. I believe she received some joy out of the attention. What a good Catholic woman to take in a brown disabled orphan. She was receiving attention she craved through my suffering. I was simply a toddler they could do experiment on. Raw material to be used.
I had nowhere else safe to go, and I was losing my will to survive. Each time, I dwindled further into my brain for protection, further away from the world outside. I had somehow been chosen to be the sacrifice by the white coats.
I wasn’t supposed to survive.
And I was losing my will to.
I kept hearing Mother whisper in that space where the living go to die, "live".
Content / Trigger Warning
This site contains references to medical trauma, childhood surgery, adoption, loss, overdose, institutional neglect, and sexual assault / molestation attempt.
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