PITTSBURGH – Shelby Slagle sauntered into UPMC Presbyterian hospital and heartily greeted the security guard perched behind the revolving doors: “Hi, I’m Shelby, and I’m here for my new heart.”
Other than her wedding, this day — May 4, 2015 — was expected to be the happiest of her life. The previous night, she and her husband, Ryan, were getting ready for bed in their suburban Columbus, Ohio, home when the hospital called. Leave immediately for Pittsburgh, a nurse told her.
They had a heart ready for her.
Shelby had lived her entire life — 27 years — with a heart anomaly called ventricle septal defect. She was born with a hole in the wall between her heart’s lower chambers. She underwent surgery in Columbus when she was 4. Doctors transformed her heart from four to three chambers — a procedure known as Fontan.
She grew up a jovial, family-oriented Midwestern kid without physical restrictions: playing clarinet in the marching band, making the Canal Winchester high school basketball team even at 4 feet, 11 inches tall. She loved cooking, thunderstorms, music, creating homemade gifts and hanging out with her younger sister, Haylee. Her dad treasures the fleece Cincinnati Bengals blanket she stitched together for him.
By the time she reached her mid-20s, her heart started giving her problems: severe fatigue, fluid retention in her abdomen and breathing trouble plagued her.
Installation of a pacemaker at 25 didn’t lead to long-term improvements. Her heart was slowly failing. A little less than 200 miles from Shelby’s home in suburban Columbus, UPMC loomed as a place where she could find a cure of last resort: a heart transplant.
UPMC came with a stellar reputation in the transplant field, backed by the legend of Dr. Thomas Starzl, known as the father of organ transplantation.
“We did a lot of research, and we truly believed UPMC was the place to go,” her mother, Laurie Amick, told the Tribune-Review during an interview at her home.
The long journey of getting listed for the surgery can be retraced through Facebook posts. On Feb. 13, 2015, Shelby posted a letter from UPMC informing her that she had been added to the waiting list.
“It’s official!” Shelby wrote. “Woa.”
On May 3, 2015, Shelby wrote on Facebook: “Hello, everyone! Yes, I did receive the call tonight. I am on my way to Pittsburgh as we speak.
“Please remember, there is a possibility this can be a false alarm, and it may not! Also, as I am very excited/freaking out, please pray for the donor family right now. They are losing a loved one tonight. Family will be updating as much as possible. GOD IS IN CONTROL!”
A day later, Shelby received a donor heart from an unknown woman, which is the norm with transplants. She was making a full recovery, sitting up, talking and texting, according to her mother. Her parents, Laurie and Craig Amick, rarely left her side.
“She kept saying, ‘I’m walking out of this hospital on July 4,’ ” Laurie Amick said. “She was definitely on the road to recovery.”
She told her parents the new heart tickled and felt great.
“She had never had a normal heartbeat before,” her father said. “I would have to say Shelby’s transplant was going to be a success. It was beating strong.”
The positivity and celebratory attitude descended into a string of complications that culminated in a tragic ending. Her parents say the downturn began soon after May 24, 2015, when UPMC doctors transferred Shelby into an isolation room in the cardiothoracic intensive care unit.
She died about a month later.
UPMC declined to comment beyond a statement it issued last month.
“We extend our sympathy to the family of Mrs. Slagle and appreciate their graciousness,” UPMC spokeswoman Allison Hydzik said.
An unexplainable infection
Shelby had developed a fungal infection, the same kind that killed a woman eight months earlier and would kill a man eight months later. All three transplant patients were housed in the same room, known as “Bed 3.”
“It was just night and day, a pretty fast downslide,” Craig Amick said. “To me, it was, ‘Oh my gosh, what the heck is going on?’ Nobody knew what was going on.”
About two weeks later, doctors noticed a bedsore on her back side that had some sort of infection, the Amicks said.
“It got progressively worse,” her mother said. “Eventually, she had to go to surgery every day. They would take out more tissue and removed most of her buttocks. The infection had gotten so deep. It had eaten down through the skin, the muscle and started to get to the bone.”
By mid-June, the family started to realize Shelby would not survive.
“It was the most horrific thing I have ever seen in my life,” Craig Amick said. “To sit there and watch your child be eaten to death by infection was …” He did not finish the sentence.
Doctors soon mentioned the word “rhizopus,” a form of mold that was eating through Shelby’s body. At the time, nobody knew how or why she had acquired the infection.
Shelby existed on a breathing tube and could no longer talk. Her mother bought her a small whiteboard from the hospital gift shop. For a few more days, she could write notes.
“She wanted somebody to scratch this,” her mother said between tears. “Or she wanted somebody to rub her feet. She was hot. She was just trying to meet basic needs.
“And then, it got to the point where she couldn’t hold the pen.”
Sometimes, she hallucinated.
“She was just out of her mind toward the end,” Laurie Amick said.
On June 19, she was able to send her mother a text message.
“Mom, I think I’m dying,” she wrote.
“She did not close her eyes for days. I don’t know if she was not able,” Laurie Amick said. “She just laid there and stared, and she had this coloring in her eyes. I wanted so badly for her to sleep.”
A week later, on June 26, 2015, Shelby was gone.
“She died a horrible death,” her mother said. “I’m glad it did not go on, because at a certain point, it just became too much.”
Mold crisis ensues
Shelby was treated in the same room of Presby’s cardiothoracic intensive care unit in which at least two other transplant patients with fungal infections received treatment before dying. Tracy Fischer, 47, and Che DuVall, 70, of Perryopolis, who died in February, also stayed in that ICU room.
A fourth, unnamed patient who contracted a mold infection died in September 2015 at UPMC Montefiore. A lawsuit on behalf of a fifth transplant patient, Daniel Krieg, who died at Montefiore on July 9, contends a fungal infection contributed to his death.
The room in question at Presby, known as a negative-pressure room, is intended to house patients with an infectious disease so any air they might infect does not flow to other areas. The ventilation system, which is designed to pull outside air into a room, could increase infection probability for a transplant patient taking immunosuppressant drugs.
A Centers for Disease Control and Prevention report in December advised UPMC not to house transplant patients with compromised immune systems in negative-pressure rooms. UPMC said it would comply.
The report was issued after three transplant patients who contracted fungal infections at Montefiore or Presby died within a year. DuVall, the fourth patient, already had been sickened. He died two months after the CDC issued its report.
“We went there because of the reputation that they have for being a great transplantation team,” Laurie Amick said. “We never thought to question the facility.”
She had high praise for the nursing staff and doctors who treated Shelby.
“The physicians and the nursing staff were pretty amazing,” she said. “The doctors who cared for her were very attentive. We had a bond with the staff.”
Shelby’s husband, Ryan, agreed to a $1.35 million lawsuit settlement in August, according to Franklin County, Ohio, Probate Court records.
Fischer’s family settled for the same amount in Allegheny County Court of Common Pleas. DuVall’s lawsuit, filed by his wife, is still in the court system.
“To be honest, it could have been 52 trillion dollars, it doesn’t bring Shelby back,” Laurie Amick said. “I don’t care about the money.”
Ryan Slagle, who married Shelby in December 2013, did not wish to comment for this story. The Amicks said they had his blessing to talk to the Trib.
In September 2015, UPMC acknowledged a problem with fungal infections and shut down its transplant program for six days. The CDC opened its investigation.
Craig Amick said he felt conflicted.
“We said, ‘OK, good, they’re shut down,’ but then we thought, ‘Oh my, there are a lot of people out there that really need the transplants,’ ” he said.
The Amicks stressed that they won’t stop supporting organ transplants.
“I don’t want people to be fearful of transplant because of what happened to Shelby,” Laurie Amick said. “The circumstances were different.
There are a lot of success stories that come from transplants.”
After attending Kent State University for two years, Shelby took a job as an early childhood teacher at Nationwide Children’s Hospital Daycare Center in Columbus. She absolutely loved children, according to her mother.
“Part of that is because she was tiny and full of life, they could relate to her,” Laurie Amick said. “There was a natural match there. They loved her.”
She and Ryan planned to start a family after her transplant. She planned to return to work.
“Waiting on the transplant list gives me hope,” Shelby wrote in a blog post. “Hope that I can continue to plan my future with Ryan and that someday we can buy our first home. Hope to have children and start a family. Hope that we can grow old together.”
Shelby’s presence can be felt in every room of her parent’s home: pictures of her happy face on the refrigerator, kitchen counter, bulletin board and dining room. In the living room, there’s a larger photo of Shelby and her broad smile on an end table.
Laurie Amick, an information technology manager, wakes each day at 4:30 a.m., pours her coffee and talks to the photo before getting ready for work.
She sits on the couch, peering through a window above the fireplace at the early-morning stars in the sky.
“I feel like she’s up there looking down on me,” she said. “It’s comforting.”