Escape from the Mayo Clinic: Parents break teen out of world-famous hospital
Updated 10:05 PM ET, Mon August 13, 2018
Teen accuses world-famous hospital of 'medical kidnapping'
Updated 12:17 AM ET, Tue August 14, 2018
This is the first part of the series,"Escape from the Mayo Clinic." Read the second part here.
Sherburn, Minnesota (CNN)In
a jaw-dropping moment caught on video, an 18-year-old high school
senior rushes to escape from the hospital that saved her life and then,
she says, held her captive.
At
the entrance to the world-renowned Mayo Clinic, the young woman's
stepfather helps her out of a wheelchair and into the family car.
Staff members come running toward him, yelling "No! No!" One of them grabs the young woman's arm.
"Get your hands off my daughter!" her stepfather yells.
The car speeds away, the stepfather and the patient inside, her mother at the wheel.
Mayo security calls 911.
"We have had a patient abduction," the security officer tells police, according to a transcript of the call.
'A cautionary tale'
The patient's name is Alyssa Gilderhus.
She
and her family say she wasn't abducted from the Mayo Clinic in February
2017; rather, she escaped. They say the hospital was keeping her there
against her will -- that Mayo "medically kidnapped" her.
Unhappy
with the care she was receiving at Mayo, they say, they repeatedly
asked for her to be transferred to another hospital. They say Mayo
refused.
According to police,
Mayo officials had a different plan for Alyssa: They had asked the
county for assistance in "gaining guardianship of Alyssa," who was an
adult.
Alyssa Gilderhus before her ruptured aneurysm and two-month hospitilization at the Mayo Clinic.
A
spokeswoman for the Mayo Clinic said hospital officials would be
willing to answer CNN's questions if Alyssa signed a privacy release
form giving them permission to discuss her case publicly with CNN. The
spokeswoman, Ginger Plumbo, supplied that form to CNN.
Alyssa
signed the form, but Plumbo declined to answer CNN's questions on the
record. Instead, she provided a statement, which said in part, "We will
not address these questionable allegations or publicly share the facts
of this complex situation, because we do not believe it's in the best
interest of the patient and the family. ... Our internal review
determined that the care team's actions were true to Mayo Clinic's
primary value that the patient's needs come first. We acted in a manner
that honored that value for this patient and that also took into account
the safety and well-being of the team caring for the patient."
This
story is based on interviews with Alyssa and members of her family, a
family friend, law enforcement officials and a former member of a Mayo
Clinic board, as well as documents including law enforcement records and
Alyssa's medical records.
By everyone's account, this is an
unfortunate and devastating story about a bitter clash that went out of
control -- a clash between a Minnesota farm family and one of the
world's most revered hospitals.
"It's
confusing to me why this went off the rails so horribly," said Richard
Saver, a professor at the University of North Carolina School of Law,
who at CNN's request reviewed medical and legal documents that the
family and law enforcement officials provided to CNN.
Art
Caplan, head of the Division of Medical Ethics at the New York
University School of Medicine, also reviewed the documents, and he
agrees.
"This should never have happened," he said. "This is a cautionary tale."
The relationship between Alyssa's family and the Mayo Clinic started off well.
On
Christmas morning 2016, Alyssa settled in with a mug of hot chocolate
to open her gifts. She was surrounded by her large family: her mother,
Amber Engebretson, a stay-at-home mom; Duane Engebretson, her stepfather
since she was 4 years old, who manages a construction company and the
family's farms; and her five younger siblings, then 18 months to 11
years old.
Alyssa Gilderhus on Christmas morning 2016.
They
live in Sherburn, Minnesota, population just over 1,000 people, about
150 miles southwest of Minneapolis, on a farm with sheep, cows, horses
and pigs.
Alyssa was thrilled with her first
Christmas present: a pair of cowboy boots emblazoned with the emblem of
the Future Farmers of America, her favorite club.
Then she went to the bathroom. Her parents heard screaming.
"Mom, I need you!" Alyssa yelled as she lay curled up on the floor, vomiting.
It
was immediately obvious this was much more than just a stomach bug. Her
left side was very weak, and she couldn't hear out of her left ear.
"You could see looking at her that she was petrified," her stepfather said.
He called an ambulance. A local hospital determined that Alyssa, who'd always been healthy, had a ruptured brain aneurysm: A blood vessel inside her brain had suddenly and unexpectedly burst.
Surgeons explained that her life was on the line. They drilled a hole in her skull to relieve the pressure on her brain.
A
nurse gave her parents a bag of Alyssa's hair, which had been shaved
off for the operation. Some people liked to have it, she said.
Amber and Duane cried as they considered
that this bag of hair -- their daughter's long, beautiful hair -- might
be all they had left if she died.
They
begged to have her sent to the Mayo Clinic. The main campus for the
world-renowned medical center was 85 miles away in Rochester, Minnesota.
"They're the best. People come
from all over the world to go to Mayo," said Alyssa's mother, Amber
Engebretson, who worked as a vehicle inspector for the Minnesota State
Patrol before staying home to care for her family.
But Alyssa couldn't get to Mayo immediately. There was an ice storm. Ambulances couldn't drive, and helicopters couldn't fly.
The
weather eventually broke, and about 7 p.m. -- about nine hours after
the aneurysm -- Alyssa finally arrived by ambulance at Mayo headquarters
in Rochester.
On Christmas
night, surgeons gave her a 2% chance of living, her parents said.
Doctors wrote in her medical record that her prognosis was "grim."
Her parents reached out on Facebook for prayers. They called their daughter the #Christmasmiraclegirl.
Alyssa lived up to that name. She survived, thanks to four brain surgeries over the next month. Her doctors were ecstatic.
"They were like, she's not supposed to be here. She beat the odds," her stepfather said.
"Mayo neurosurgeons saved her life," added her mother. "We'll be grateful to them forever."
On January 30, Alyssa was transferred from the neurology unit to the rehabilitation unit.
It should have been a happy turning point. But that's when the troubles began.
Tensions flare
Although all had gone smoothly on the neurology floor, the family got into conflicts with the rehab staff almost immediately.
First,
doctors there wanted to take Alyssa off oxycodone, a powerful opioid
painkiller that the neurology doctors had prescribed for pain after
surgery. Her most recent surgery -- the fourth in one month -- had been
just a few days before.
"She'd lay in bed with tears coming out of her eyes because she was in so much pain," her stepfather said.
Many medical authorities, including the Mayo Clinic's website, say opioids are critical for post-surgical pain management.
A week after Alyssa arrived on the rehabilitation floor, her mother shared her feelings on Facebook.
"[Alyssa's] and my frustration level was high and it seems that they just don't listen sometimes," Amber wrote on February 7.
Alyssa Gilderhus with her mother and stepfather, Amber and Duane Engebretson, and her younger siblings.
More
disputes arose. Her parents say their daughter's breathing tube was the
wrong size, and they had to pester doctors to get it corrected. They
also say the family -- not doctors -- discovered that she had a bladder
infection. They say a social worker discussed private financial
information within earshot of visiting friends and relatives.
Her parents asked for the social worker and a doctor to be replaced.
"We just need someone who will at least listen to us and hear us," Amber wrote on her Facebook page on February 20.
Alyssa's parents say that at their request, they had a meeting with her care team on February 21.
"I
had two whiteboards filled up with questions left unanswered, tests
left undone, and every other question we could think of," Amber wrote on
her Facebook page that day.
Amber
says that at one point during that meeting, she told the staff she felt
like they "don't give a f***," later apologizing for her language. She
also asked for a second doctor to stop taking care of their daughter.
"We
took no crap and laid it all on the line. ... Because seriously what do
we have to lose at this point," Amber wrote on Facebook that night.
Mayo kicks Mom out
On
February 22, the day after that meeting, Amber got into a disagreement
with a nursing aide and asked to have her removed from her daughter's
care team. She was the fourth staffer the family had asked to be
replaced in just three weeks.
That
afternoon, Amber says, she was scheduled to have a meeting with the
social worker -- the same one she'd asked to leave her daughter's care.
Amber
had requested the meeting, and she says that as she approached the
office at the appointed time, a man she'd never seen was standing in the
office doorway. She said he saw her coming and went into the office and
shut the door.
Amber listened through the door. She says that as she suspected, the man and the social worker were talking about her family.
"I
proceeded to open the door and say, 'Since you're talking about my
family, I think it's only appropriate that I would be here also, to be
included in the conversation,' " she remembers.
She
says the man puffed out his chest and stepped toward her, and she took a
backward step into the hall. The man, who Amber later learned was a
physician, demanded that she leave.
She says the man told her, "I run this whole rehab unit. Do you understand me?"
Amber describes the doctor as "intensely aggressive."
She replied to him, she says, with similar aggression and frustration: "I need to talk to you. Do you understand me?"
The doctor walked away.
CNN reached out to this doctor and other staff members involved in Alyssa's care but did not receive responses.
About
an hour later, Alyssa's parents say, the same doctor, the social worker
and a nurse approached the family. They were accompanied by three
security guards.
"[The doctor]
said to me, 'You are not allowed to participate in Alyssa's care. You
are not allowed on Mayo property. You will be escorted off the premises
right now,' " Amber remembers.
Alyssa Gilderhus with her mother, Amber Engebretson.
Amber and Duane say they asked why Amber was being kicked out but did not receive an answer.
Later,
a social worker would tell police that "Amber interrupted a meeting
because Amber was upset over the care Alyssa was receiving. Due to that
incident, Amber was escorted off of [Mayo] property."
According
to Alyssa's parents, the doctor told Duane that he could stay but that
he would not be allowed to have any involvement in his stepdaughter's
care.
The couple say they asked the doctor whether they could speak with a patient advocate.
"He said, 'There is no patient advocate,' and walked away," Amber said.
When asked about Amber's dismissal from the hospital, Mayo spokeswoman Plumbo sent CNN a statement.
"Our
care teams act in the best interests of our patients. As a general
practice, this includes sharing information with family members and
facilitating family visits and interactions with patients and their care
providers when the patient is in our care. However, in situations where
care may be compromised or the safety and security of our staff are
potentially at risk, the family members' ability to be present in the
hospital may be restricted."
Plumbo did not elaborate on whether or how Amber compromised her daughter's care or placed staff at risk.
"We would never compromise her care," Amber said. "She's our daughter. We love her."
She also says she never put staff members at risk. "We would never do that -- ever," she said.
On February 23, the day after Amber was kicked out, she went on Facebook.
"PRAYER
WARRIORS UNITE!!!! We need your help. ... Please READ THIS AND SHARE
THIS POST in hopes it reaches the people or person who can help us," she
wrote.
"I HAVE BEEN TOLD I AM NOT
ALLOWED IN ALYSSA'S ROOM AND NO ONE IS ALLOWED TO HAVE ANY SAY OR
PARTICIPATE IN HER [CARE]. ... I AM NOT ALLOWED TO SEE HER!! We have
been given no reason why, no paperwork, and no explanations," she
continued. "I never imagined something like this could happen in our
world and a very hard situation already has been made even harder!!"
The response from one Facebook user led the family to conclude that they needed to get Alyssa out of Mayo, and fast.
'Basically a prisoner at Mayo'
Alyssa,
who was legally an adult during her entire hospitalization, says that
around this time, she started asking doctors and nurses to transfer her
to another facility.
She says she never received a response.
"They were cruel to me," Alyssa said, adding that she wanted to get out of Mayo "as bad as possible."
On February 23, three weeks into her daughter's stay in rehab, Amber complained on Facebook, tagging Mayo.
"They
refuse to let her go. ... We cannot transfer [Alyssa] out or get her
discharged," she wrote. "No one has any say in [Alyssa's care] and she
is basically a prisoner of Mayo."
Alyssa's stepfather and grandmother say they also asked to have her transferred out of Mayo.
"I asked two to three times a day, and it would go nowhere," Duane said.
"Duane
said, 'This is ridiculous. We don't want her here; Alyssa doesn't want
to be here; she doesn't feel safe here,' " her grandmother Aimee Olson
remembers. "But there was no response."
Duane
says he tried to talk to a senior doctor on the rehab staff about a
transfer. It was the same doctor who had asked his wife to leave the
hospital.
"He said 'I have
nothing to say to you. This is a legal problem,' " Duane remembers. "I
even asked him, 'can I speak to your supervisor, your boss,' and his
exact words were 'I run this whole floor,' and [he] turned around and
walked out of the room, and that was it.'
Duane
says he called the Mayo Patient Experience office and in a 45-minute
phone call described the family's grievances. He said the patient
experience specialist told him he would be back in touch after getting
Mayo's side of the story.
Olson,
Alyssa's grandmother and Amber's mother, said she also tried to speak
with the senior doctor but was told he wasn't available.
"She
was truly being held captive," Olson said. "I would never believe a
hospital could do that -- never in my wildest dreams."
The family and a friend say they were instructed by Mayo staff not to talk to Alyssa about her mother.
Two nurses were assigned to be with Alyssa, and they kept careful watch, according to visitors.
"It
was like they were watching every move you made," said Joy Schmitt,
Alyssa's boyfriend's mother, who visited frequently after Amber was
asked to leave the hospital.
Alyssa Gilderhus with her younger sister resting at the Mayo Clinic.
'They were taking over our daughter'
On
February 21, the day before her mother was kicked out of the hospital, a
Mayo psychiatrist examined Alyssa and found that she lacked the
capacity to make her own medical decisions, according to a summary of
her care that her doctors wrote after she left Mayo.
Around
this time, a hospital social worker went to adult protection services
in two counties to try to get those authorities to get guardianship over
Alyssa, according to the police. If they had succeeded, she would have
become a ward of the state.
Alyssa
and her family say that they weren't told any of this as it was
happening but that around this time, they started to feel that Mayo was
isolating Alyssa.
On February 26,
staffers confiscated Alyssa's cell phone, laptop and tablet after
finding that she'd made a video for her mother, according to Alyssa and
her family. They say Alyssa's visitors were also banned from bringing
their devices into the hospital.
The same
day, Mayo staffers said no one would be allowed to stay overnight with
Alyssa, according to Duane and Amber's sister, April Chance, who
attended a meeting with Alyssa's care team.
Duane
says he asked the staff to reconsider. He said his stepdaughter had
never spent the night alone in the hospital. But he says they refused.
"The doctors said they were doing this for Alyssa's own benefit," Duane said.
The
family says the doctors also told them that visitors would no longer be
allowed to attend Alyssa's treatment sessions, such as physical and
occupational therapy.
"I said, 'We're her cheerleaders. We cheer her on,' " her aunt remembers. "And they said 'No, you're impeding her care.' "
She said the staff didn't elaborate on how they were impeding her care.
"They were restricting us little by little from even being with Alyssa. They were taking over our daughter," Duane said.
Mayo also pushed back Alyssa's discharge date, which was supposed to be February 27.
Meanwhile, her mother's following was growing on Facebook, with many users posting angry messages that tagged Mayo.
One woman sent Amber links to stories about a teenager named Justina Pelletier.
Articles in The Boston Globe
and elsewhere described how in 2013, Pelletier, then 14 years old, was
placed in state custody for nearly 16 months after Boston Children's
Hospital accused her parents of interfering in her care. She spent much
of that time in a psychiatric ward.
Amber
says she spoke on the phone with Justina's parents, Linda and Lou
Pelletier. She says they warned her there would be signs that the
hospital was seeking guardianship for their daughter. They would keep a
tight watch over her and limit her communications with her family.
Through their lawyer, John T. Martin, the Pelletiers confirmed that they had conversations with Amber.
A
spokeswoman for Boston Children's Hospital told CNN that the hospital
is "committed to the best interest of our patients' health and
well-being" and declined to discuss the specifics of the case.
Amber sent a text to the woman who'd sent her the news articles.
"OMG I am SICK. This is what is happening," Amber wrote. "It rings lots and lots of bells. ... Omg ... I am so scared."
A Mayo board member steps in
Alyssa's
parents reached out to a friend of a friend for help: Mark Gaalswyk,
who at the time was a member of the board of directors for the Mayo
Clinic Health System in Fairmont, Minnesota.
Gaalswyk
emailed a Mayo Clinic vice president. He informed her of the situation
and explained that CNN had contacted the family.
"Could
you please please do what you can to get your arms around the
[situation] immediately?!" he wrote. "Please get to the bottom of this
quickly before it blows up even more."
But Gaalswyk's pull wasn't enough.
He says Mayo treated Alyssa "terribly."
"I'm
probably the most pro-Mayo person who has walked the face of this
earth," said Gaalswyk, who left the board January 1. "But this was a
mess."
He said he thinks Amber probably "used words she shouldn't have" with hospital staff.
"I'm not saying that Amber is 100 percent in the right," he added, "but I know what Mayo did is not OK at all."
In
its statement to CNN, the Mayo spokeswoman said that "Mayo Clinic is
committed to the safety and wellbeing of all the patients we treat."
Feeling
like they were running out of options, Alyssa's parents then enlisted
the help of Karie Rego, an attorney and patient advocate they'd met on
Facebook.
On February 27, Rego
spoke on the phone with Joshua Murphy, Mayo's chief legal officer, and
faxed him a letter urging Mayo to transfer Alyssa to another facility.
"Given what has happened here, an expedited transfer this coming week would be best for everyone," she wrote.
Rego
says an attorney in Murphy's office called her later. She says that he
told her he couldn't speak with her and that she never heard anything
more from Mayo's legal department.
That night, Alyssa's parents thought about Justina Pelletier and the 16 months she spent in state custody.
They went online and printed a form for Alyssa to sign, saying she was leaving the hospital against medical advice.
But her parents didn't know how they would get her out. Two nurses were assigned to keep watch over her at all times.
They started to hatch a plan to get her out of Mayo the very next day.
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