CLERMONT COUNTY, Ohio (FOX19) - Life has been hard for 11-year old Jack Steiger of Union Township, Clermont County. His parents Heather and Todd say by the time their son was six months old, he needed surgery to help with seizures caused by epilepsy. Heather says Jack had a stroke on the operating table, leading to developmental delays. He then developed a movement disorder.
“He could control nothing,” Heather said. “Couldn’t even get his hand to his mouth from just shaking.”
Jack’s doctors, Heather says, decided a deep brain stimulator would help. So they selected a world-renowned neurosurgeon at the Mayo Clinic in Rochester, Minnesota to do the operation.
The Mayo Clinic is currently ranked the number one hospital in the country according to U.S. News and World Report. Heather and Todd say the surgeon implanted the device in 2013 and replaced the batteries in 2015. They say both surgeries were a success.
“He was able to hold a cup by himself to feed himself,” Heather said.
Last November, Heather says Jack was due for new batteries again, so she says they picked the same surgeon to perform the procedure again and met with him the day before. The Steigers provided FOX19 NOW Investigates with a clinical note from that meeting. It states:
“We discussed the indications, potential complications, and alternatives. Patient understands that there are risks in particular of infection in which case we may have to remove the total system, but the infection risk for each side would be about 1%. The plan is to go ahead and take him to the operating room tomorrow and under general anesthesia do bilateral battery change. All questions answered.”
The Steigers provided to FOX19 NOW Investigates a 22-page formal complaint that they filed with the Minnesota Board of Medical Practice. Part of their complaint states:
“During this pre-op, (the surgeon), never once mentioned that he wouldn’t be performing the actual surgery.” Days after the surgery, the Steigers say they noticed a startling change in Jack’s health.
“Turned out he was septic,” Heather said. “He was declining very, very fast.”
Heather says she was told Jack’s surgical sites were infected and that Jack had to be flown back to Mayo to have the batteries taken out.
“He had to have major brain surgery,” Heather said.
She says Jack almost died.
“It’s a day I will never forget because I realized what our family would be like without him,” Heather said. Curious about the complications, Heather says she started requesting hospital records, wanting to know exactly how this happened to their son. What the records showed them they say, shocked them.
“We never ever, ever in a million years would’ve assumed that the surgery would be done by a resident,” Heather said.
The Steiger family claims they experienced what’s known as a ghost surgery. It’s a practice patient advocates say sometimes happens in teaching hospitals, when a surgeon assigns a resident to perform the procedure without the patient’s knowledge. A Mayo Clinic review of the November surgery, that the Steigers provided to FOX19 NOW Investigates, stated:
“(The surgeon) was the consultant over the procedure and present in the room during Jack’s surgery. (the surgeon) did not have any overlapping surgeries or other schedule conflicts during Jack’s surgery. Mayo operates under a team-based model. (The resident) was part of the team and performed this surgery as he has done in the past. (The surgeon) remained the responsible surgeon and provided oversight throughout the procedure.”
“It is (the surgeon’s) practice to inform patients and families that Mayo’s medical practice involves a team approach and that other members of the team may participate in the patient’s surgery and/or perform portions of the operation.”
The Steigers say this didn’t happen. Their complaint to the medical board states:
“He did not inform us at any time that he would be a consultant over the surgery.”
“We’ve never had anyone tell us, now other people are going to be performing surgery on your child,” Heather said.
The Steigers acknowledge signing what’s called an informed consent form. Under the section “health care team” it reads in part:
“I understand that other providers, including physicians-in-training, physician assistants, surgical technicians, or others may be involved.”
It goes on to say:
“For some surgeries, a provider other than the primary surgeon may perform significant tasks including opening and closing the wound, harvesting grafts, removing tissue, and implanting devices or altering tissues.”
In their formal complaint to the Minnesota Board of Medical Practice... the Steigers state:
“(The surgeon) should have gone over all the parts of the written informed consent, which was on the computer. We signed a black electronic pad, never seeing the paper at all.”
“Everyone is just so used to signing away on their credit cards,” Heather said. “Signing a pad for everything, that people don’t realize the importance of reading the actual document.” They say they would never have allowed anyone other than their hand-picked surgeon to operate on their son, had they understood that was a possibility.
The Centers for Medicare and Medicaid, the agency that regulates hospitals that receive Medicare payments, has guidelines of what a well-designed informed consent process should include.
“A discussion of who will conduct the surgical intervention.”
“A discussion of whether physicians other than the operating practitioner, including but not limited to residents, will be performing important tasks related to the surgery, in accordance with the hospital’s policies.”
The American College of Surgeons' statements on principles states there should be:
“A discussion of the different types of qualified medical providers who will participate in their operation and their respective roles.” Mayo Clinic says they followed the guidelines. The Steigers allege they didn’t.
Mayo issued a statement that reads:
“Mayo Clinic has not been notified of a complaint by the Minnesota Board of Medicine but will provide the requested information under its protected process if and when we are contacted.”
The Steigers say they also filed a complaint with the Joint Commission, a non-profit that accredits and certifies health care organizations. In e-mails sent to the Steigers, the commission closed the case, stating they do not review an organization based on whether substandard care was delivered in one individual case. The Steigers say they have filed again with new information they say they have obtained. They say they have also filed complaints with the Minnesota Board of Malpractice, the Attorney General’s Office in Minnesota, the U-S Department of Health and Human Services, alleging Mayo Clinic withheld records. Mayo Clinic responded with the following statement:
“Mayo Clinic recognizes that the Steigers have been faced with many challenges and empathize with their situation. Nonetheless, we strongly dispute the Steigers' 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. Despite our attempts to obtain permission, it has not been granted.”
The Steigers want changes made to the informed consent form. They say Mayo provided the names of the doctors involved through Jack’s electronic patient portal, but want all names listed on the informed consent form.
“That form needs to be revised,” Heather said. “It needs to list the name of every surgeon involved in a person’s surgery, as well as what role they will be playing in that surgery.”
They are also calling for all hospitals to provide a paper copy to a patient and give them a chance to read it, prior to being asked to sign their name on the black electronic pad. Mayo Clinic tells FOX19 NOW Investigates that:
“Hard copies of the electronic form are available upon request and the signed form is available for viewing in the patient’s medical record portal.”
The Steigers plead for you to ask questions.
“The outpouring of people that sent messages saying please don’t stop fighting,” Heather said. The Steigers say Jack had a new brain stimulator system placed back into his body at Children’s Hospital. The family says it will take several weeks before they’ll know of the effectiveness of the system this time around.
“He’s ignited a flame,” Heather said. “And it’s now up to the public to carry that torch.”