I met Amy Burke and her husband, Peter, shortly after we started The Peggy Lillis Memorial Foundation in the fall of 2010. A doctor that was an early booster for the foundation asked if we had encountered any women who had acquired C. diff after giving birth. At that point, we were still seeing what happened to our mother as an outlier of an epidemic that was largely impacting elderly and already immune-compromised people. Hearing Amy’s terrifying story of becoming infected with C. diff following the birth of her daughter, Lily, was eye-opening.
I had dinner with Amy and Peter at a lovely Italian restaurant in Greenwich Village. It took Amy a while to warm up to me and gather the emotional strength to tell her story. Amy’s story is one of a healthcare professional who had spent her career treating pregnant women, a woman who wanted to give birth at home and had her plans torn asunder, and a mother who saw what was supposed to one of the most beautiful events in her life turn into a fight for her life. It is also the story of a couple who, feeling betrayed by traditional medical treatment, sought novel, holistic and, ultimately, successful approaches to treating Amy’s C. diff infection.
The data on the number of women who experience a C. diff infection during or following pregnancy is scant. Since the United States lacks a mandatory and uniform method for reporting C. diff infections both in hospital settings and in the community, it’s impossible to know the scale of C. diff infections in pregnant and postpartum women. But what we do know is very troubling.
Beyond Amy’s experience, there have been a number of recent small scale studies in the US and Canada suggesting that not only is C. diff a real danger for new mothers, but it is also a potentially deadly complication of giving birth in a hospital. In 2006, Dr. Judith O’Donnell of Drexel University reported on six cases of women with “community acquired C. diff” – three of whom were pregnant at the time, one of whom had recently given birth, and two who had recently had elective hysterectomies – but were otherwise generally healthy.
The outcomes for two of the patients were devastating: one died following a total colectomy (surgical removal of her colon) and 14 days of antibiotic therapy, and another was placed in intensive care for sepsis but ultimately recovered. Sadly, the study was unable to determine how and when the women acquired clostridium difficile – whether they were truly “community-acquired” or were colonized at some point during their medical treatment.
Amy’s story is truly heart breaking. While a bit longer than most of our “C. diff Stories”, I ultimately left it as written since it provides not only a medical case study, but also a glimpse into the fear and anger that plagued Amy during her fight against C. diff. Please click on the link below to read Amy’s story.