CINCINNATI — An Ohio family is issuing a warning about a routine practice at teaching hospitals, which they say completely violated their trust.
And they believe it’s the reason their son with severe disabilities had major complications after what was supposed to be a routine procedure.
It's called a ghost surgery—a procedure in which someone like a surgical resident performs the surgery rather than the actual surgeon.
The story begins with Jack Steiger, 11, whose life got off to a rough start.
He's nonverbal and his parents say he's cognitively 3 months old. Jack's involuntary movements, known as chorea, made normal things nearly impossible.
“It’s painful to watch," said Jack's mom, Heather Steiger. "Just to have no control of of your limbs. And the way I would describe chorea is an extreme form of Parkinson's disease.
But what was even harder for the Steigers is watching Jack's other symptom: self injury.
“He could hit himself sometimes 50 times in one hour," Heather said.
The Cincinnati family, desperate for relief, sought out a surgery for Jack normally reserved for adult Parkinson’s patients. They were sent to a neurosurgeon at the Mayo Clinic in Minnesota, ranked the best hospital in the nation.
Jack had the deep brain stimulator implanted in his brain in 2013. Through trial and error with different settings, this child’s life began to significantly change. The batteries in the chest send electric stimulations to the brain, helping to ease the symptoms.
But every few years, the batteries need to be replaced in a surgical procedure, which is what caused the family to fly back to the Mayo Clinic in November 2019. It's a surgery that 11-year-old Jack had before by the neurosurgeon who did his original surgery without any issues.
But his mom, Heather, says this time turned out to be very different.
"We believed he was the best surgeon out there for for DBS," she explaied. "The day before surgery we meet with him and he completely passes himself off as the one that's going to be doing the surgery."
Heather says when Jack woke up from surgery, he was screaming and flailing—she believes in severe pain—requiring five people to hold him down for over an hour.
Mayo would later dispute that Jack wasn't in any pain, saying he was rather suffering from a side effect some children experience from anesthesia.
"In my opinion, I don't think he'll ever forget waking up from the surgery," said Jack's dad, Todd Steiger. "He can't tell us with words but we see his screaming at night."
Within a couple weeks of being home in Ohio, Heather says Jack spiked a fever and his surgical sites were red and swollen.
“We ended up being air cared, because he was deteriorating so much so quickly, back to Mayo for them to extract batteries,” she said.
After being sent home again, Jack developed an infection in his head, forcing the family to pay $4,000 to fly their son back to the Mayo Clinic in January—this time to have the entire deep brain stimulator removed.
By this point, Heather began to investigate the November surgery.
Heather said when she pulled up the operative note, she saw a name on it she hasn't seen before—the name of a second-year resident who performed the surgery.
While this switch-out might sound unusual, it’s not.
In speaking with a doctor and former hospital administrator, they say ghost surgeries happen all the time.
“Ghost surgery is when the person actually cutting into you during an operation is not actually the surgeon you thought was going to be doing the operation," said Dr. Michael Greger, a physician, author, and professional speaker. "Between 50 to 85 percent of operations are carried out, not by the surgeons, but surgeons in training called residents.”
That statistic he sites is from 1996, noting that there is not data being actively tracked on how often ghost surgeries are performed.
“Surgeons don't see why this is a big deal for people, and people don't understand why surgeons don't think that this is a big deal,” explains Donna Prosser with the Patient Safety Movement Foundation.
So the question is, how is allowed? It all comes down to the consent forms.
“Often, the either line would be something like, I give permission for, you know, residents to participate in the operation or something like that,” Greger said.
Mayo says being a teaching hospital, they operate under a team model to ensure residents learn from some of the best surgeons in the country.
Heather admits she did not read the informed consent, which says residents are allowed to implant devices.
While the Steigers are adamant that they fully support teaching hospitals, they say they would have never agreed to a resident doing the surgery on their son.
The Mayo Clinic denied repeated requests for an on-camera interview, but instead released a statement: “Mayo Clinic is aware of the Facebook page. We recognize that the family has been faced with many challenges and empathize with their situation. Nonetheless, we strongly dispute the allegations against Mayo Clinic and have significant evidence to support our position. Our commitment to federal and state privacy laws restricts us from discussing the details of this matter unless we are given permission by the family to do so. The family has indicated multiple times that they will not allow us to talk about this situation publicly.”
In the nearly year since the initial surgery, the Steigers don't have any clear answers as to what caused Jack’s infection or if the attending surgeon supervised the entire surgery.
Jack had to wait over six months to get a new DBS unit put in at Cincinnati Children's.
Heather says he still has a long way to go before his involuntary movements and self-injury get under control again, and they are still assessing possible permanent damage.
The Steigers have filed numerous complaints to the Joint Commission, the Minnesota Medical Board and attorney general, and the Office of Civil Rights.
Those investigations are underway, which Heather says can takes months or years.
The family is also working to get legal representation, but they've been told that will be difficult unless Jack is severely and permanently harmed.
The Steigers are also calling for action to get the informed consent process changed to list who is actually doing the surgery.
As of now, the only name required to be listed is the attending surgeon, who may only be supervising and not performing the surgery.
The family created a website to help families prevent ghost surgeries.
First, they say to ask a lot of questions—ask who is actually doing the surgery, how residents or other medical staff in training will be participating, and if the attending surgeon be leaving the operating room at any point during the surgery.
And you also have the right to ask for residents to not participate or even enter your operating room.
Repeat any of your requests time and time again and get everything you both agree to in writing.