Wondering if you're a victim is worrisome, especially if something went wrong during surgery. Discovering you're a victim, with proof that can be used in a court of law, is indescribable. We took our son to the #1 hospital in the nation to have two batteries replaced in his chest. He's pictured above in this picture, being air cared, back to the hospital after a botched surgery. He was septic and declining fast.
Our darling Jack, born with the world against him and pictured on the left. His brain was inflicted by a stroke at just 6 months old. By 10 months old, his right temporal lobe had to be removed, as well as portions of every other lobe on the left side of his hemisphere, all due to intractable epilepsy. He literally could not afford to lose one more brain cell, one more brain function, have one more bad thing happened. Before he was one, he'd already been through 90 times more than any person ever will in a lifetime. It was why we chose Dr. L. He was the nation's "renowned DBS surgeon." We had an experienced attending pediatric brain surgeon here, whose sole focus was on DBS. We was willing and offered to do Jack's surgery. But we kept thinking...Jack can't afford anything else but the top surgeon in the nation. He just can't afford anything less. There's so little we can give him...the least we can give him are those expert hands, if not the life we had dreamed for him.
We were victimized. needed four additional surgeries and multiples procedures as a result...three of those four surgeries requiring going back into his brain that was already unperfect. Putting your faith into a trusted surgeon, one of only a handful who can help, treat or save you, makes you vulnerable. You're there because you can no longer help yourself. You're forced to trust and up until our son became a victim, we relied on that trust to get us through every hospital event. Because trust was so important to us, because having who we thought was "the expert in the nation," we traveled over 500 miles for our son's "expert hands," which he knew, as we'd been patients of his from Cincinnati for years. We had a perfectly good attending surgeon at Cincinnati Childrens that specialized in Deep Brain Stimulation Surgery and had years of experience. But we wanted "the nation's best." Call us crazy, which is what we feel now. But our son had no more brain cells to lose. A stroke, a full temporal lobectomy at six months and then partial removal of every single lobe on the left side of his brain at ten months...we HAD to have the best in the nation and were willing to give up other things at the cost of getting him there and having him treated there. Having full trust was what got us through and always gave us hope that there was always something more we could do for our son by at least providing him with talented hands and brains of true expertise.
When that trust is broken, especially when it ends with devastating, preventable results, the immense amount of pain, feelings of violation, disgust and loss, is just indescribable. As Jack's mom, my life will never be the same. I'll never be able to walk into a hospital again, a place we visit often without feeling traumatized and violated all over again. The feeling of hope never the same and the once coveted feelings of trust, now turn to suspect. We hope by spreading awareness and sharing PROACTIVE measures, you won't end up on this page. But the reality is, ghost surgeries happen every day and nationwide.
Most people have never wondered if they were a victim of a ghost surgery because prior to us nationally teaching about it (reaching national news soon!), the term has been rarely used. We only discovered "it" after looking up our son's operative report on Mayo's Patient Portal just two days after our son's surgery, only to see the name of a doctor at the bottom that we didn't recognize. Things became more suspicious when the notes were taken down completely hours or days later. It was five days after our son's surgery that the surgeon we thought did our son's surgery, actually signed it.
We still didn't catch on, even after he got two staph infections in two different surgical sites. We had no experience in that area; it wasn't until we contacted a patient advocacy group in another state to discuss a medication error that we were advised to look more closely into how he got two infections, in two different sites. I requested the surgical notes be put back up on the portal and then compared it to notes from 2013 and 2015, when Jack had the same identical surgeries with Dr. L, the doctor we'd hired and were told was performing it the third time, but did not. The note, void of so many things a everything a surgical note should have, including the use of standard care surgical site infection prevention for pocket surgeries. There was no surgical count, no time attestations, no mention of Dr. L's presence or time verification. When I tried to gather them from the hospital, they came up short, even "our own surgeon" admitting he was empty handed. And the rest snowballed and spiraled and every day we still seem to be learning more of what wasn't done that should have. In a way, this will be a good time to have a surgery. Jack's story will be keeping all hospitals, nationwide, more vigilant.
Q: How will I know? A: Another surgeon outside of the one you hired signs FIRST at the bottom of the sheet and there is no mention of the surgeon you did hire of being present. Even if the surgeon you hired is named at the top as the primary surgeon, that only means he's responsible...not that he performed it. For example, on our son's OP report, three people were listed at the top, including some random guy, initials P.P. Not only did this surgeon have nothing to do with our son's surgery, but he was listed as a First Assistant, a title he shouldn't have been given by Mayo's own curriculum until his second year of residency. He held his MD for only 6 months at the time of our son's surgery. (Yes, Mayo...we know).
Q: What should I do if I find out I'm a victim but luckily I'm not physically harmed? A: First, my husband and I just want to say we're sorry that you were failed by the person you literally put your life into the hands of. We understand your feelings of violation, anger, and visceral helplessness. Seeking counseling is helpful, as well as making sure you report it.
If you weren't verbally told that another doctor would be performing surgery on you, that is considered a form of "battery" by law. BUT, case law (meaning one time in history when it went to trial) set the standard that if there aren't negative outcomes, no financial retribution from the doctor or hospital must be made.
Patients aren't in the habit of asking to read the Informed Consent. Patients better get in the habit. That's your responsibility, especially now that you've learned from us that up until now (and now even still), when surgeons go over the form, they may leave out the most important part you should know...he/she may or may not even be there most of the time. You've now also learned that each hospital uses different language on their Informed Consent and each hospital division will have their own clauses, specific to the types of procedures their department performs.
Q: What if I find out I'm a victim and I am physically harmed? First, my husband and I just want to say we're sorry that you were failed by the person you literally put your life into the hands of. We understand your feelings of violation, anger, and visceral helplessness. You're going to have much more on your plate than just feelings. There are going to be tremendous costs, your insurance company needs to be informed through something called subrogation (link), you'll have to gather medical records (link) and begin by submitting a complaint with the hospital (link). Let them carry out their reviews and see what they say. If your damage is severe or lifelong, you should have no problem getting a lawyer. Most firms will determine whether or not they will take your case at no cost, which is a lot of work for them considering they pass most cases up. Why do they pass most cases up? Because most medical malpractice lawyers only get paid if they win your case which can sometimes take years to do. If your case does not win, the lawyer loses to and literally collects nothing. However, the cost for their time investment and talented expertise is high. Most firms will collect 40-45% of your total award and that's not all who will take some of that money and remember, what is left from that you have to pay back your insurance. Sadly, anytime there's medical malpractice, everyone loses in some form or other. *This page not edited for grammatical errors, sentence structure, spelling.
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