A Superbug Stalked My Daughter and Stole Her Life. Phage Therapy Could Have Saved Her

This blog is a part of a series that CDC launched to highlight the importance of patient safety by providing educational information and simple ways to help people stay informed on patient safety topics. Read the blog below authored by Diane Shader Smith, to learn more about antimicrobial resistance and the importance of investing in innovative treatments like phage therapy. 

Resistant bacteria do a lot of taking – of dreams, of time, of travel, of friendships, of freedom, of potential, of plans, of lives. It does not discriminate. It’s a complex, unpredictable, irreversible, progressive, painful, suffocating, choking weed. When my bacteria leaked into my bloodstream, I developed sepsis. My body convulsed violently and erratically. Four nurses held me down as my septic fever rocketed to 106 degrees and then even more nurses arrived to cover my face and limbs with ice packs. There were so many unfamiliar sets of eyes looming over me, touching me, pressing me down into the bed as I shook. All I could focus on was their eyes. I struggled against them because I just wanted my parents. But they were standing in the corner, helpless. It was such a raw and vivid experience that I’ll never forget it. It felt as if I was being burned from the inside out, as the infection was raging inside me. Simultaneously I had the out-of-body sensation of sitting off to the side, seeing everyone in the room as they were scrambling to bring my fever down. Seeing myself thrashing and writhing with no ability to stop it. – Mallory Smith.

My daughter Mallory would battle that superbug, Burkholderia cenocepacia, for 13 years. At some point, she also acquired a fungal infection, which further complicated her case. Reading her autopsy report and learning she didn’t have to die almost killed me. Working to ensure others don’t die unnecessarily from resistant bacteria has given my life new focus.

To paraphrase the conclusion of Mallory’s autopsy report: phage therapy is ideal to treat bacterial infections because phages are very specific and only kill the target bacteria, so they aren’t dangerous or toxic. If Mallory had gotten phage therapy sooner, she could have lived.

For five years I’ve been crusading for phage therapy, the novel treatment Mallory received at the end of her life thanks to herculean efforts by my husband, Mark, epidemiologist Steffanie Strathdee, and teams of researchers around the world.

How is it possible that this promising treatment hasn’t reached mainstream medicine to protect others fighting antimicrobial-resistant infections? Our experience with phage therapy started after Mallory was rejected as a candidate for a double lung transplant. The antimicrobial-resistant infection she was trying so hard to fight would put her at risk for the procedure. My husband, Mark, was searching for ways to mitigate that risk. His research led him to learn about bacteriophages (phages), naturally occurring viruses that have evolved to attack bacteria.

While phage therapy is approved for use in other countries, it is not approved for use in the United States. When Mallory received phage therapy via compassionate use on November 14, 2017, there was not one institution in the United States offering it. Now four universities have established phage therapy centers with others doing the work in a less formalized way. Some of the brightest minds are deeply committed to bring this therapy to patients. The obstacle is money – for research and development, for clinical trials, and for compassionate use.

Compassionate use, which is also known as expanded access, is a potential pathway for patients with a serious or immediately life-threatening disease or condition to gain access to an investigational medical product, like a drug, for treatment outside of clinical trials when no comparable or satisfactory alternative therapy options are available. Compassionate use is particularly challenging since there is no allocated funding source, despite its ability to offer compelling and critical data as my daughter’s case underscores.

Storytelling is an amazing tool to influence change on the political level. We need to put a face and a voice to the issue of antimicrobial resistance – and specifically to phage therapy. We can learn more from the voices and experiences of people living with and dying from antimicrobial resistance − more so than through the details of a particular strain of bacteria. They are as diverse as they are misunderstood.

Many millions have died – and will die – from superbugs. Science told through story can change hearts, minds, and behaviors. We need to share more stories; statistics and graphs don’t always evoke the needed emotion to demand action.

In 2022, Mallory’s story was shared with the world when Salt in My Soul, a documentary based on her posthumous memoir, was released. It is based on Mallory’s memoir of the same name published in 2019. One hundred percent of profits from the book and film are going to phage therapy research, clinical trials, and compassionate use cases. To date, we have raised more than six million dollars from the intellectual property Mallory left and the independent fundraising we have done.

I share Mallory’s story – and encourage any of you living with or loving someone with resistant bacteria or a fungal infection to tell yours – so that we can raise awareness and resources. To maintain our world leadership and save lives, we urgently need to invest in innovations like phages, infection prevention, and wastewater management along with the more traditional drug development.

Diane Shader Smith is a writer and cystic fibrosis advocate.