A healthy 11-year-old girl from Tucson, Ariz., who spent months in the hospital fighting several antibiotic-resistant infections and needed a lung transplant to save her life.
"Addie walked into the hospital with me on May 19, 2011, and would not pass again through those doors until October, five months later."
Addie will never be the same again, and there’s nothing I can do about it. I thought this as I sat in the hospital watching my 11-year-old daughter’s health rapidly fade. She had tubes running all over her body, a special machine had been brought in to help her breathe, and doctors were preparing me for the worst.
I was not new to hospital settings, but I’ve never been invested on such a personal level. As a nurse, I remember learning about drug-resistant organisms, such as methicillin-resistant Staphylococcus aureus (MRSA) and Escherichia coli (E. coli), in school. I preached to my patients and colleagues the importance of using antibiotics properly to avoid promoting the development of life-threatening pathogens. However, as I sat there watching my little girl fight for her life I realized, dear God, this is happening to us!
It all started on Mother’s Day 2011. I remember Addie being more tired than usual. I didn’t think too much of it since she was always such an active kid who loved to swim, run track, and play softball. Those things catch up with you, and I figured on this day she was just worn out. About a week later, Addie mentioned to me that she had been having a lot of pain in her hip. I suspected a pulled muscle but made an appointment with our doctor for the next day just in case. We never made it to that appointment. Instead, her pain continued to increase, and she developed a fever of 103, prompting us to make a trip to the emergency room.
Doctors there saw nothing wrong with her white blood cell counts or other lab results that might indicate she had a bacterial infection, so they sent us home with ibuprofen and a reminder to see our doctor within three days. But Addie didn’t get better. I called paramedics and took her to the emergency room one more time before seeking a second opinion at another hospital. Addie walked into the hospital with me on May 19, 2011, and would not pass again through those doors until October, five months later.
Those months were a whirlwind, and it started immediately. Doctors ordered a culture of her blood, and found her body was overcome with a Staphylococcus infection, a condition called sepsis. The infection had begun growing as an abscess in her hip muscle, and spread into her blood, eventually causing a devastating bacterial pneumonia in her lungs. The abscess in her hip had gone untreated for so long that she had developed a blood clot deep in a vein near the abscess. Unfortunately, part of the clot broke away and caused a pulmonary embolism to her right lung – further complicating matters.
Within 24 hours, my little girl went from happy and healthy to being intubated and hooked to a breathing machine. Her small body was riddled with tubes and wires. She had surgery to remove the abscess from her hip. She was not getting better. Eventually her lungs began to fail entirely, and she had to be placed on a machine called ECMO (extracorporeal membrane oxygenation), which circulated her blood and added oxygen to it, like and external lung. The hope was that taking the pressure off her lungs would allow them to heal. The machine is usually only needed for five to seven days; Addie was connected to it for three full months.
During this time, Addie’s doctors realized her lungs were not getting better– she would need a lung transplant to survive. However, they were unsure they could perform a transplant, because there were so much bacteria running amok in her body. She had developed infections caused by several drug-resistant bacteria – including extended-spectrum beta-lactamase (ESBL)-producing E. coli, Stenotrophomonas maltophilia, and a resistant form of pneumonia caused by Enterobacter aerogenes. Addie’s doctors had run out of the most common antibiotics used to treat these serious bacteria so, in desperation, they turned to an antibiotic known as colistin. Colistin is very powerful, but it is also so highly toxic to the kidneys and other organs that doctors rarely use it. We started saying extra prayers.
Our prayers were answered as she responded to this antibiotic therapy and was cleared for a double lung transplant. The transplant went off successfully, but, in the end, our lives will never be the same.
When we left the hospital, Addie was in a wheelchair. She had lost the use of her left arm, had almost no vision in her left eye, and had restricted vision in her right eye. She had limited use of her left leg. She had suffered a stroke. She had lost 30 pounds, almost one third of her body weight. She was so weak and debilitated that she couldn't even turn herself side to side in bed. With intensive therapy Addie is improving, but progress is slow, and no one is sure how much function she can regain. She has horrible scars all over her body from the various procedures, tubes, and tests that ultimately saved her life. My once normal, strong, athletic Addie will need medical attention and therapy for the rest of her life. I’m so grateful that she’s still with us and that we made it through, but my heart aches when she looks up at me and asks, “Why me?”, because I don’t have an answer.
Nothing can describe my feelings as a mother sitting helpless as I watched my little girl go from smiling and healthy to near death in less than a day. Antibiotic-resistant infections have devastated my daughter’s life and our family’s health, wellbeing, and finances. The health care costs from Addie's five-month hospital stay alone came to $6 million. We need to take steps now to ensure we are able to more effectively battle these infections in the future and that we have the antibiotics we need to do so. My family and I pray every day that no one else will have to experience what Addie has gone through.
Posted: February 2012
Note: Interviews with Addie's mother, Tonya Rerecich, who lives in Arizona, can be arranged through the IDSA communications staff.
What can you do to help? Urge Congress to pass legislation to spur research and development of new antibiotics, as part of the Prescription Drug User Fee Act (PDUFA) reauthorization bill. Send an email to your congressional representatives today.
If you would like to share your story, please contact John Heys.
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