A Mom Shares Her Near-Death Experience with Sepsis That Left Her Blind and Without Legs
At the beginning of 2008, Carol Decker had the life she always dreamed of: She was working as a medical assistant in her small town of Enumclaw, WA, was happily married to her college sweetheart, and had a beautiful 1-year-old daughter and another little one on the way.
Then, 31 weeks into her pregnancy, Carol began experiencing sharp pain on the left side of her body. She had no idea at the time, but it was the start of a life-changing fight with one of the deadliest diseases in America.
The First Symptoms
"The pain started in my back and wrapped all the way to the front of my body," Decker tells Shape. "It was bad enough that we went to go see an obstetrician in town. When he couldn't figure out what was wrong, I went to my own obstetrician in Seattle." But after an overnight hospital stay in Seattle, doctors decided to discharge her.
Back at home, Decker's initial pain had subsided and it felt like everything was back to normal. Then, 12 days later, she woke up feeling weak, with intense body aches. "I went to go pick my daughter up from her crib, but just couldn't," she says. "I had just gotten back from my grandmother's funeral, was nearing the end of my pregnancy, and we had just moved into a new house. So I just thought I was exhausted."
After resting for a little while, Decker took her temperature: 102.7. Nervous, she immediately called her OB, who told her to take it easy and pop some Tylenol, thinking she might have the flu. "I just didn't have any other symptoms at the time," Decker says. "Just general fatigue, weakness, and a fever."
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Twenty-four hours in, her temp continued to rise even after her sister-in-law and mother-in-law helped give her cold baths. Once her fever hit 103.7, Decker started having contractions. "I called my husband and said we needed to go the hospital," she says. "By that time, I was experiencing some diarrhea but I have Crohn's disease, so I chalked it up to that."
Identifying the Problem
By the time they reached Seattle, Carol was in excruciating pain. When the doctor came to see her, the first thing she noticed was a rash on Decker's face—the first symptom that indicated that maybe what she had was more than just the flu. "She had nurses wheel me over to the hospital where I was given a shot of painkillers," Decker says.
Decker was momentarily relaxed, but her OB suddenly noticed the blood pressure monitors for both Carol and her baby drop drastically. "Within minutes there was a team of doctors in my room telling us they had to deliver the baby and took me in for an emergency C-section," Decker says. The last thing she remembers is kissing her husband goodbye.
During this time, Decker, her family, and doctors still didn't understand what was happening inside her body. Little did they know that ever since she first started experiencing pain on the right side of her body, nearly two weeks prior, Decker had been battling sepsis, one of the deadliest major illnesses in the United States. (Related: This Woman Is Fighting for Sepsis Awareness After Almost Dying from the Disease)
"Sepsis is the reaction of the body towards an infection," Mark Miller, M.D., a microbiologist and chief medical officer at bioMérieux previously told Shape. "It can start in the lungs or urine or could even be something as simple as appendicitis, but it's basically the body's immune system overreacting and causing various types of organ failure and tissue damage."
Haven't heard of sepsis before? You're probably not alone. "The problem with sepsis is that it's highly unrecognized and people haven't heard of it," Dr. Miller told us. Yet according to the Centers for Disease Control and Prevention (CDC), over a million cases of sepsis happen every year. In fact, it's the ninth leading cause of disease-related deaths in America. To put that into perspective, sepsis kills more people in the U.S. than prostate cancer, breast cancer, and AIDS combined, according to the National Institutes of Health.
Even Decker herself couldn't have imagined that the culprit was sepsis. "Having worked in the medical field for a long time, I had only seen sepsis on death certificates or in really old people," she says. She's right; sepsis is most common among adults who are 65 and older and among young children.
It wasn't until later that Decker's doctors discovered that she had pneumonia linked to a form of Streptococcus bacteria. But there's no way of telling where she got strep, why her infection felt like the flu, or why it resulted in sepsis, her doctors said. (Related: Can Extreme Exercise Actually Cause Sepsis?)
Her Fight with a Deadly Disease
In the OR, a crew of doctors and nurses had delivered Decker's daughter Safiya, who was premature. Weighing just 4 pounds at birth, she was immediately taken to the neonatal intensive care unit (NICU). Doctors then moved on to fight to save Decker's life.
"Doctors had put me in a drug-induced coma to help my body recover faster," Decker says. "I had swollen to 200 pounds since I was being pumped with IV fluids and had a fever spiking to 106.9 degrees. I don't remember anything during this time."
Decker's family would later tell her that doctors had told them to say their goodbyes—the medically induced coma was necessary for her body to heal and get Decker out of the horrific pain she was experiencing, but they couldn't be certain she'd ever wake up. But Decker surprised them all when she woke up a week later, just 7 days after the emergency C-section. "It's blurry to me, but I remember waking up and asking for Safiya," Decker says.
A nurse brought her baby to her but noticed that something wasn't right. "She noticed that I was looking past the people speaking to me," Decker says. "I was so heavily medicated that the fact that I couldn't see just didn't register." Doctors would later conclude that Decker had gone blind beyond recovery—partly because of the sepsis and partly because of the influx of strong drugs used to keep her alive.
Decker's consciousness was a huge sign of hope, but while she was in the coma, her body had experienced a severe lack of oxygen and nutrients. This caused her skin to turn bluish-red, her kidneys to fail, and her hands and feet to lose circulation because of constricted blood vessels.
"I wasn't aware of this at the time, but by that point, doctors weren't able to find a pulse below my ankles, and my fingers had started to turn dark," Decker says.
Her fever showed no sign of dropping either, and doctors believed it was because of her feet and left hand. Her limbs were dying, and her body was using all of its energy to fight infections.
On July 5, doctors amputated Carol's legs. A week later, they took her left hand and right ring finger. "I didn't know it at the time, but my life had changed forever," Decker says.
A Long Road to Recovery.
The reality of her situation didn't hit Decker until she came home in September, nearly 100 days after her daughter was born. "My mom was trimming my nails and I turned to her and said, 'Mom, you missed a finger,' and she said, 'No I didn't,'" Decker recalls. "That's when I realized my body wasn't the same and the worst part was, I couldn't see the differences."
She also lost her sense of independence. "I was like an infant," she says. "I could barely move on my own and had to be picked up and put into a wheelchair. I didn't even know how to feed myself."
The most challenging part of her recovery, however, was losing her vision. "It's weird, but when you can't see what your body has been through and how it's changed, it's hard to understand the severity of things," she says.
But after weeks of letting herself be sad and process her emotions, she knew life was only going to go one of two ways: "I could either succumb to my situation and live my life in misery, or I could stay positive, work hard, and make the best of my new reality," she says.
So, she began putting all of her energy into getting better and moved into a rehab hospital two weeks later. There, she was fitted for artificial legs and slowly began learning to walk again.
Starting a New Chapter
Decker had to relearn how to navigate the world—whether that's walking, putting on her makeup, or fixing her daughters' hair. But her positive attitude has inspired thousands of people—something she talks about in her new book, Unshattered.
"A year and a half after my amputations, I was asked to speak at a local mother-and-daughter group about overcoming adversity," she says. "I had never spoken in front of people before, but my husband encouraged me to go. I was surprised at how many people were moved by my story."
Today, she speaks almost monthly to different groups at colleges, universities, churches, and hospitals. While she had to say goodbye to her career in the medical field, Carol feels like she's found a new purpose. "Once I learned that people actually cared about what I had to say and learned that my story could have a positive impact on people's lives, I knew I had found my calling," she says.
While speaking to an audience, she has one simple, defined message: "Let go, embrace the moment, and have fun."
She chooses to live by this motto and hopes to be an example—not just for amputees, but for all kinds of people. "I want people to know that everyone has a choice," she says. "I chose to be happy and you can too. At the end of the day, it's your life and you get to decide what to make of it. It really is that easy."