February 18, 2012

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.

C. diff Stories: Amy Burke, DC

Amy Burke & Family

Amy Burke, Peter Lambert and their daughter Lily

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  1. Pat Mastors says:

    Christian, what a hugely important story, and one I will certainly share. I did not see a way to comment to Amy directly but applaud her courage and selflessness in reliving such a painful experience so that others may learn from it. She is right to be outraged at the arrogance of those doctors who not only patronized her in her concerns, but abdicated their responsibility in not paying attention to a protocol to readicate C-diff that WORKED. Is this story on the CureTogether website? It may reach others there, and you can link the full story to your website. And on that topic, what a wonderful resource you are providing. Your foundation and quest to inform will save lives. Peggy is smiling on you.

    1. Christian says:

      Thanks, Pat. I’m not familiar with Cure Together. Can you send me info on it. There is no way to comment directly to Amy via the blog but I will send her you lovely comments.

  2. Pat Mastors says:

    http://curetogether.com/ is a crowd sourcing platform where people with like medical conditions learn from each other. I can’t think of a disease where those who suffer are more in need of this kind of information.

    Thanks for passing my thanks along to Amy. Keep up the good work!

  3. Caryn Becker says:

    I contracted C-diff following a C-section in 2008. I have polycystic kidney disease, so I was on macrobid to prevent UTI’s and kidney infections throughout my pregnancy. I also had a residual clot in my leg from a DVT from several years earlier so I was on Lovenox during the pregnancy. Then I had a large fibroid that prevented my son from being born vaginally. For all these reasons, I had a scheduled c-section where the doctors used clyndamycin to prevent infection at the wound site. However, I have since read that I was at high risk of a c-diff due to my long term use of macrobid during the pregancy. Clyndamycin killed the good bacteria in my digestive tract and left me vunerable to c-diff. I started having symptoms of c-diff 2 weeks after my surgery. I spoke with my primary doctor about my symptoms and neither he nor I correlated the symptoms with my c-section or the Clyndamycin. It took a stool sample test about a week and a half later, to confirm c-diff. Meanwhile I was dehydrated and in extreme pain – worse than anything else I ever experienced. I was on Flagyl for 3 months before the c-diff cleared. I think it was probiotics in combination with the Flagyl that finally healed me. All my doctors should have known I was at high risk of C-diff based on the research, and informed me of the symptoms that I should be looking for. I could have been on Flagyl immediately. Why it took so long to diagnose, is beyond me. I really could have died.