Patient Advocates

Surviving Maternal Sepsis Leads to Patient Advocacy

Editor’s Note: This post, which describes Sarah Kiehl’s experience with maternal sepsis, first appeared in ImproveDx,  digital newsletter of the Society to Improve Diagnosis in Medicine (SIDM). Kiehl is a patient partner in SIDM’s Patients Improving Research in Diagnosis (PAIRED) project. She has also shared her story on the website of the Sepsis Alliance, the organization that launched Maternal Sepsis Day on May 15, 2019.  

SIDM partners with patients, their families, the healthcare community and other interested stakeholders to improve diagnosis and eliminate harm from diagnostic error. A post from SIDM earlier this year highlighted suggestions and tools for engaging patients in the process of diagnosis.

Sarah Kiehl’s Story

On Thanksgiving Day 2015, Sarah Kiehl delivered twins via C-section. Having suffered for many years from endometriosis, she had a routine laparoscopic hysterectomy 11 weeks later. Two weeks following the hysterectomy, she noticed abnormal vaginal discharge and immediately consulted her doctor. He assured her that her symptom was just part of the healing process.

Two days later, she became violently ill and went to the emergency room with nausea, vomiting, elevated temperature and severe pain. Following a CT scan and some confusion between her surgeon and radiologist, it was determined that she had some type of infection. She remained in the hospital overnight for antibiotics. She was ultimately diagnosed with sepsis due to low blood pressure, high temperature and rapid heart rate; she received medication and underwent emergency surgery.

“After months of healing, I am forever changed by this experience, and have decided to become a sepsis advocate in search of healing,” says Sarah. Read more about her story in the SIDM Story Bank.

As a sepsis survivor, Sarah was invited to join SIDM’s PAIRED project, which trained patients how to engage, as equal partners, in the design, conduct and dissemination of diagnostic research to improve diagnostic quality and safety. She and the other PAIRED graduates learned about the diagnostic process and how to identify possible research topics and questions, as well as the nuances of diagnostic research.

As a result of the training, Sarah is now actively engaged as a member of the Patient Advisory Board of the Disparities Project, a newly funded research project that addresses disparities in diagnosis. The Disparities Project is conducting a study to identify specific diagnostic error vulnerabilities for young people, women, and African Americans. Sarah will be focusing on the areas surrounding sepsis, with the goal to initiate protective strategies to reduce error.

Sarah is now a happy, healthy mother of three daughters. She feels that her experience with sepsis has given her a second chance. “I am honored to advocate for young women and mothers about the signs and symptoms of sepsis, and, ultimately, survival,” she says. “I will continue to fight to help save lives.”

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Susan Carr Susan Carr is a medical editor and writer specializing in patient safety and engagement. In addition to curating the EngagingPatients blog, she produces publications for the Betsy Lehman Center in Boston and the Society to Improve Diagnosis in Medicine. Susan lives and works in Lunenburg, Massachusetts.

Susan Carr has 61 post(s) at EngagingPatients.org

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