A horrible anniversary for the Tappers
This photograph is from two years ago today, the beginning of the worst time in our lives, when our beloved Alice entered the hospital with severe abdominal pain.
She had a perforated appendix, but it went misdiagnosed by the doctors.
She was beginning to have sepsis, but they gave her a Tylenol.
Her body was beginning to shut down her organs, but they gave her a heating pad.
Thankfully, we were able to angrily demand better care and surgeons intervened, and were able to save her life, probably hours before it would’ve been too late.
The great Dr. Sanjay Gupta looked into Alice’s case and did a story about it last year that you can watch here.
And you can read Alice’s oped here.
Thankfully, two years later, Alice has taken her pain and become an advocate for better awareness of sepsis and better awareness of misdiagnosis of appendicitis.
She has taken her frail body and turned it into that of a champion athlete, a rower, who will soon enough be at the University of Michigan.
But we also know that we are lucky, and we are privileged. We know that not every story like ours has an ending like ours. We know that not every family has the ability to get the phone number of a hospital executive and plead for imaging and plead for a consult. We know Alice is alive because of our privilege. And that Alice Johnson, Alice Smith, Alice Rodriguez might not be. And that is why we will continue to speak out. We will continue to use our voice to make sure that everyone knows about misdiagnosis of appendicitis. We will continue to use our voice to make sure that everyone knows about risks of sepsis.
To the mom I met in Austin who said because she heard Alice’s story she insisted that the doctors — the doctors telling her that her son was too young to have appendicitis — check again: thank you. THANK YOU. We will keep telling Alice’s story.
To the family we heard from in Boston who were at their wit’s end because no one was taking their daughter’s pain seriously: thank you. THANK YOU. We will keep telling Alice’s story.
We will continue to make sure everyone knows to demand imaging – x-rays, sonograms. To demand consultation with specialists. To use your voice. To demand better medical care. To not allow Doctors to back into iffy diagnoses because of “diagnostic momentum.”
Doctors and nurses go into medicine to save lives, and they are great, but we are all human and we all make mistakes, we are all fallible. Awareness is key.
-Jake
We have to be our own advocates in healthcare, unfortunately. I, too, almost died because I had only my symptoms treated when I had fulminating sepsis. My cardiologist told me I was days away from certain death even with proper treatment. I ended up in 2 hospitals a total of 5 weeks and having open heart surgery 10 days after my 25th birthday. My cardiologist, who used to call me the kid, because I looked so young back then, told me my family and friends could have just as easily been visiting me at the cemetery as today in person. Fast forward, I became an RN afterwards to help others, and retired after 37 years now primary caregiver 24/7 for my 96 yr old Mom.
It’s one thing to be the lucky recipient of privilege to help save your daughter, it’s another thing to then use that privilege as a force for good to save other families who don’t have that power.
And we shouldn’t understate how Alice had to step into the spotlight herself to do this. She had to sacrifice anonymity because she didn’t want this to happen to anyone else who may not have had the happy ending you did. That’s bravery.
Much love to your whole family.