Sepsis claimed girl’s limbs but not her spirit
(MCT) CHICAGO — Erica Norals walked into the kitchen of her South Side Chicago apartment on an early autumn evening and nearly wept at the sight.
There, without prompting or cajoling, stood her 11-year-old daughter, Ashanti, washing dishes at the sink. Balanced on two prosthetic legs and holding a sponge between arms amputated just below her elbows, the sixth-grader was scrubbing the dinner plates with a determined vigor.
“I wanted to help clean up,” Ashanti said.
Norals’ natural reflex was to fawn over the effort, to celebrate the moment as a milestone in an impossibly long journey for their family. Instead, she reminded herself that 11-year-old girls handle these types of chores every day and that her daughter should be no different.
“Well, then,” Norals said, “please carry on.”
Norals walked out of the kitchen, convinced they had reached a turning point. Once ruled by Ashanti’s limitations, Norals could now see the many possibilities — and they weren’t so different from the ones she envisioned for her daughter before she brought her to the hospital May 23, 2011.
Ashanti entered the hospital that day with a fever and severe pain in her right leg. A botched sepsis diagnosis and two months later, she left with four amputated limbs and an uncertain future.
At the time, it seemed she would no longer roller-skate, challenge the boys in her class to running races, hold her baby brother or do myriad other things that 8-year-olds enjoy. Through no fault of her own, she faced a lifetime of never being able to fully dress herself, of needing help with basic hygiene, of learning to walk again, of seemingly insurmountable obstacles at every turn.
So when Ashanti initially withdrew into herself, refusing to try her new prostheses or engage with people outside her immediate family, her mother understood the girl’s anger. Norals just refused to give in to it.
To the contrary, she decided to simply be thankful her daughter — her athletic, sassy, big-hearted daughter — was alive. And though she had no idea how to do it, she vowed to build a meaningful life for a third-grader who woke up one day to find herself without most of her arms and legs.
Less than three years later, Ashanti swims, uses a computer and likes to snap pictures of her younger brother on her phone. She attends a public elementary school, walks on prosthetic legs and is required to make her bed each morning. Her family recently settled a medical malpractice lawsuit with the University of Chicago Medical Center for $32 million, which will ensure Ashanti can finally live in a handicap-accessible house, afford the latest prosthetic technology and have a personal caregiver for the rest of her life.
“I knew she would feed off whatever emotions I felt, so the first thing I did was try to be positive about everything and tell her that there was nothing she couldn’t do if she put her mind to it. It seemed to work, so I’ve just stayed that way,” Norals said. “Maybe someday when the kids are grown and in college, I’ll break down. … But until then, I’m just going to push all those feelings aside and make sure Ashanti lives a full and happy life.”
Ashanti doesn’t dwell much on the hospital stay or the amputations, opting instead to focus on more pressing sixth-grade issues such as Justin Bieber’s rumored girlfriends and her disdain for her school uniform. She knows how logistically difficult her family’s life has become since the surgeries, but she seemed genuinely surprised to hear her mother describe the emotional toll.
“But I never saw you crying in the hospital,” the young girl said.
Her mother looked at her and smiled.
“In that case,” Norals said, “I did my job.”
Norals thought she had a firm grasp on life’s blessings as she returned from a Monday morning workout on May 23, 2011. She had a job as an assistant manager at a pharmacy, was working on a teaching degree and had two happy, healthy children.
Her oldest child, Ashanti, hadn’t been feeling well for two days, but Erica wasn’t overly concerned. Ashanti had banged her knee at school a few days earlier, but she hadn’t broken the skin in the accident. There wasn’t even a visible bruise.
But when Norals returned to the family’s three-bedroom apartment in Chicago’s Washington Park neighborhood that Monday, Ashanti had a fever and couldn’t bear any weight on her right leg. She complained about being in severe pain, something she never did.
Norals took Ashanti to the University of Chicago Medical Center where, court records show, a triage nurse noted the little girl had a temperature of 100 degrees. Over the next 24 hours, Ashanti’s fever would climb as high as 104, the leg pain would worsen and her lab work would show an elevated white blood cell count.
Despite her worsening condition and another test showing the presence of bandemia — an excess of immature white blood cells that can indicate sepsis — medical records show doctors did not order any antibiotics for the first 24 hours. They treated her with morphine, ibuprofen and Tylenol, and scheduled an MRI for her right leg, her mother said.
As the hours passed, Norals’ frustration mounted. She contemplated leaving the hospital with Ashanti about 1 a.m., records show, but decided to stay.
“I felt like they weren’t doing enough, like they were missing something. It just didn’t feel right, but I didn’t know what was wrong with her,” she said. “I trusted the doctors to do their jobs. I should have trusted my own instincts.”
It wasn’t until 2:30 p.m. May 24 — more than 24 hours after arriving at the hospital — that Ashanti received antibiotics, the family’s attorneys said. But, by that time, it was far too late.
Ashanti had gone into septic shock, a life-threatening condition where the blood pressure drops dramatically as a result of infection. After going into cardiac arrest, records show, multiple organs began to fail and she could no longer breathe on her own.
Over the next few days, Ashanti’s hands and feet turned purple as the tissue in her lower limbs developed gangrene and died. There was no choice but to amputate all four limbs in order to save her life.
“This really was a case of (the doctors) starting off with the wrong presumption and never changing their minds,” said attorney Kevin G. Burke, who represented the family in the medical malpractice case. “By the time they realized their mistake, the ball had already rolled too far down the hill to catch up.”
Medical experts hired by Ashanti’s family contend she likely developed sepsis after falling and knocking her knee at school a few days before her hospitalization. Though there were no external signs of injury, blood built up internally around the damaged tissue and the area became infected. Without the proper medical care, the infection quickly spread throughout Ashanti’s 78-pound body.
An estimated 750,000 people are diagnosed with sepsis each year, according to the New York-based United Hospital Fund. About 35 percent of those cases are fatal, making it the 10th leading cause of death in the United States and prompting calls for better medical training on how to diagnose and treat the symptoms.
The hospital would not comment on Ashanti’s specific care, but issued a statement saying it “maintains rigorous policies and practices to ensure patient safety.”
“By settling the case, the Medical Center is not admitting fault in the care or treatment of this person,” the statement read. “The Medical Center worked with the family’s counsel to resolve the case so that the individual can receive the support and medical care needed.”
Ashanti remained in a medically induced coma for two weeks after her amputation surgeries. Each day, Norals would sit by her bedside and wonder how she would tell her 8-year-old that doctors had cut off her arms just below her elbows and her legs slightly below her knees.
When Ashanti finally woke up, her mother explained the situation in gentle, simple terms. It didn’t help. Norals could see Ashanti desperately trying to move limbs that were no longer there. She couldn’t speak because of the breathing tube down her throat, so she communicated with her mother through eyes filled with terror and confusion.
“I know you’re scared,” Norals recalls telling her daughter. “I know you don’t understand, but you were really sick. But now you’re here, and you’re alive. It’s OK. I promise it’s all going to be OK.”
Norals knew things weren’t OK, and she couldn’t see how they ever would be again. She believed she owed it to Ashanti to keep a brave face, but there were times when she would slip out of her daughter’s hospital room and just sob in the hallway.
Ashanti spent nearly two months at the hospital before transferring to the Rehabilitation Institute of Chicago, where she learned tasks such as walking on prosthetic legs, putting on a T-shirt and even how to get out of bed. Norals, who also had a 1-year-old son at home, quit her job so she could be with Ashanti as much as possible.
After learning more about sepsis, Norals also decided to file a malpractice lawsuit against the University of Chicago Medical Center and five doctors involved in Ashanti’s care during those first 24 hours. The hospital settled the case in October, about a year after it was filed.
The money will remain in a trust until Ashanti turns 18, with court approval needed for all major expenditures until that time. Her mother and stepfather, Jonathan, expect the first purchase to be a fully accessible home, where Ashanti — who frequently uses a wheelchair — can lead a more independent life.
At their South Side apartment building, the foundation does not support a ramp or lift, meaning Ashanti cannot have a motorized wheelchair because it would be impossible for her stepfather to carry the heavy machine up and down the front stairs. She has a manual chair, but her arms are too short to maneuver it and she must rely on other people to push it.
If no one is around to push her, Ashanti is left with few options when she’s too tired to walk on her prosthetic legs at home. She either stays put (much to her dismay) or walks around on her stumps (much to her mother’s).
The family stayed at a fully accessible home for the first time on a Make-A-Wish-sponsored trip to Disney World last spring. And the stories of Ashanti enjoying the barrier-free house seem to eclipse even those memories made at the Magic Kingdom.
“I could open all the doors and every drawer without anyone helping me,” Ashanti said. “I even made my own bubble bath.”
Ashanti wants to purchase prosthetic swimming legs, which have finlike feet to make moving in the water easier. She also knows there are special prostheses for running, biking and playing basketball — sports that she has relearned in an adaptive physical education program sponsored by Chicago State University.
Her mother has noticed a marked difference in Ashanti since she began participating in the weekly two-hour gym class nearly two years ago. She’s more agile and daring. The athletic, energetic pre-sepsis schoolgirl has been revived.
Ashanti enjoyed playing in the water before losing her limbs, but she has become an avid swimmer in the past two years since taking lessons at the Rehabilitation Institute and CSU. She now has so much confidence in the water, she went scuba diving off the Florida coast last summer with other amputees.
“It was so pretty in the ocean,” Ashanti said. “I wasn’t even scared. I just looked at everything.”
During a recent adaptive physical education class, Ashanti played a spirited basketball game with a group of boys her age. She lunged for the ball, fought for rebounds and did a little celebratory dance each time the ball swished through the net. She laughed a lot, too, paying little heed to the prosthetic legs that caused her to move significantly slower than she once did.
“Kids definitely adapt more easily to losing limbs,” said CSU professor Robert Szyman, who runs the adaptive physical education program. “Ashanti wants to play and have fun just like the other kids her age, so she’s open to new ideas and willing to take chances.”
Ashanti exhibits the same determination at home, where she talks of becoming a scientist, and would like some higher authority to address the injustice of her school uniform. No one, she said with absolute certainty, should have to wear beige pants and a yellow polo shirt every day.
“What about hot pink? Or purple?” she said. “I need color.”
“Your uniform looks nice,” her mother said. “It’s not a problem.”
“No, it really is a problem,” Ashanti tells her. “It looks terrible.”
Ashanti wishes she had just a bit more privacy. Though she still needs help dressing and brushing her hair, she bathes herself each night and makes sure her prosthetic leg liners are clean.
The evening routine takes a little longer these days, however, because she is waiting for her new prosthetic arms to be adjusted. The wait makes everything from eating to doing homework to typing on the computer more difficult — but no one is complaining.
In the Norals’ home, they’ve decided to focus on the possibilities instead of the limitations.
“When this first happened, I made a choice to count our blessings,” Erica Norals said. “And, it turns out, we have a lot of those.”
©2014 Chicago Tribune
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