Due to a series of forwarded emails between three hospital systems I discovered that Advocate Lutheran Hospital in Park Ridge sent a sample of Constance’s brain, without our permission, to St. Jude’s Children Hospital. It felt like a terrible violation.
The test was done a week after Constance passed. Constance’s father and I did not authorize any tests on Constance's brain by Advocate, St. Jude, or anywhere.
When I asked St. Jude’s for a copy of the report they directed me to Advocate Lutheran. They said that due to HIPPA they couldn’t give it to me. When I spoke to Advocate, they first said that I couldn’t have a copy due to HIPPA. Then when I pointed out that I was Constance’s mom and Constance was dead. Then they told me that I needed to speak to Constance’s primary care physician. I explained that her primary care physician didn’t request the test because the test was taken after Constance was dead. Next, they told me that I should know who ordered the second opinion by the name of the doctor on the bill. I explained that we didn’t request a second opinion because Constance was dead. Then she said she doubted she could get access to a report that was 11-months old. I told her that we didn’t authorize the test and we wanted the damn report and I was going to come over there and get it. She said she’d speak to her boss and call me back. In the time it took her to call me back I got dressed my fighting bureaucracy clothes and went to my car. She called back and said they'd have a copy for me the next day.
I was there the next morning when the office opened. They had the test waiting at the Pathology front desk. It was in an envelope with my name misspelled on the cover.
I waited until I’d returned to work before I opened and read it. I googled and cried my way through the three short pages. It was an unproductive day.