Skip to main content

The AMR Narrative

Facebook X-twitter Instagram Linkedin Youtube
Menu

My family’s meeting with Antibiotic Resistance and ESBL Klebsiella pneumoniae

My Story: Pernilla Rönnholm

 

In 2011, I eagerly anticipated the arrival of our twins. With a family history rich in twin births, my worries were minimal, given that both my father and I were twins, and previous pregnancies had proceeded smoothly.

However, during my 25th week of pregnancy, my water unexpectedly broke, leading to an immediate admission to the hospital. It was there that they discovered I had contracted an infection of some kind, prompting the administration of antibiotics for the initial two-day period. For three weeks I was bedridden with different complications before my two girls, Freya and Kirsty, were born at 28 ½ weeks. Given that they were born three months premature, my newborns were admitted to the Neonatal Intensive Care Unit (NICU) and provided with CPAP (Continuous Positive Airway Pressure) support to assist with their breathing. This additional measure aimed to provide them with the necessary respiratory assistance they required at such an early stage of development.

On the fourth day, I received a phone call notifying me about Kirsty’s deteriorating condition. She was displaying signs of distress and had started receiving medication. The medical staff assured us that there was no immediate need for us to rush to the hospital, suggesting that we could visit in the morning. However, a few hours later, we received another call informing us that Freya was also experiencing similar signs of stress and had been placed on medication.

Kirsty’s last lullaby

 

As the days passed, Kirsty and Freya’s condition deteriorated while the doctors tirelessly searched for the cause of their decline. Kirsty’s condition worsened with each passing day, leaving me with little recourse but to stand by her incubator, talking to her in the hopes of a miraculous improvement.
I was no longer allowed to have her on my chest “kangaroo style”, as she was very ill. Parents and other children in the same hall were taking tests to see if there was some sort of infection spreading in the NICU. I remember asking how long it would take before we got the answer and they said, “five days”. For some reason I just knew that would be far too late.

By the seventh day, the doctors delivered the grim news that Kirsty was battling sepsis, emphasizing the gravity of her condition and expressing uncertainty about her chances of survival. They offered us the option of an emergency christening, which we promptly arranged. Kirsty lay swollen in her incubator, her delicate state rendered any physical contact agonising for her. I was forbidden from touching her, fully aware of the intense discomfort it would cause her.

During that fateful night, the doctor informed us that it was time to discontinue life support. The sepsis had ravaged Kirsty’s entire body, except for her brain, leaving her with no chance of survival. On the eighth day, Kirsty took her final breath while resting on my chest, her fragile form cradled against me, as I softly sang “Twinkle, Twinkle Little Star.”

From that moment my life was divided into “before” and “after” Kirsty’s death. Life forever changed. I was later told that the last sense that disappears when dying is our hearing, so I was very happy knowing that she could hear me singing when she died. Knowing I was there for her until the very end.

Understanding ESBL Klebsiella pneumoniae as a mother and family


The doctor telling us to turn off the life support machine told me that Freya and Kirsty were given different treatments. Kirsty received two different antibiotics and Freya received four different antibiotics and that was why Freya potentially survived.

Upon Kirsty’s passing, we discovered that I had been infected with ESBL Klebsiella pneumoniae, a bacterial strain that was transmitted to my daughters during their birth, eventually leading to sepsis. Within the same room, numerous children had contracted ESBL Klebsiella pneumoniae, but tragically, Kirsty was the only one who succumbed to its effects.

In simple terms, ESBL Klebsiella pneumoniae refers to a type of bacteria called Klebsiella pneumoniae that has developed a special ability to resist certain antibiotics. ESBL stands for Extended-Spectrum Beta-Lactamase, which is an enzyme produced by the bacteria that can break down a wide range of antibiotics.

Klebsiella pneumoniae is a bacteria that can cause different types of infections, such as pneumonia and urinary tract infections. When it produces ESBL, it becomes resistant to many antibiotics commonly used to treat bacterial infections. This makes it harder to treat infections caused by this particular strain of bacteria.

Despite the heartbreaking loss of Kirsty, Freya continued to fight in the NICU. She exhibited resilience and, eventually, was granted permission to leave the hospital temporarily to attend her twin sister’s funeral. However, her journey was far from over. Three months later, Freya was readmitted to the hospital, requiring constant care and attention at home, with me assuming the role of her primary caregiver 24/7. The profound emotional impact of these events left me grappling with Post-Traumatic Stress Disorder (PTSD), a struggle that would take years to overcome.

Living my life on purpose

 

The loss of a child stands as one of the most formidable trials a parent can endure. Nevertheless, I find solace in the gratitude I hold for this profound experience, as it has illuminated the true value of life. With a keen awareness of life’s brevity and preciousness, fear no longer wields power over me. I wholeheartedly embrace each moment, relishing life to the fullest extent. Guided by my unwavering dedication, I am actively engaged in developing my non-profit organisation, Prematurföreningen Mirakel, which aims to educate others about this deeply significant subject. Additionally, I am committed to raising awareness about antibiotic resistance, providing support to families in the NICU, and extending a compassionate hand to those who have also suffered the loss of a child. Making all my three daughters proud.

The profound grief or trauma experienced by individuals affected by antibiotic resistance often renders them voiceless in advocating for change. Antibiotic resistance stands as one of the most perilous threats to society, and I have long emphasized that it is a silent pandemic, understood only by those directly impacted by its consequences.

Disclaimer: This story is shared with the permission of the individual(s) involved and is intended for educational and awareness purposes only. It does not represent medical advice and should not be used as a substitute for consultation with qualified healthcare professionals. While we encourage you to share the story in its original format, all rights are reserved by The AMR Narrative. Please do not reproduce, modify, or use any part of this story without prior written consent from The AMR Narrative. To request permission, please contact us here.

Pernilla Rönnholm

Twitter Linkedin WordPress

I am a positive, results-oriented problem solver with a holistic perspective, and I enjoy challenging myself, leading, and developing work while thinking outside the box. I have over 30 years of experience in administration, IT, project management, and organizational development within the Region Västra Götaland (VGR), with a good understanding of healthcare systems and procedures.

Privately, I have been advocating about antibiotic resistance working with the media since 2011 and have eight years of experience as a board chairman. I am also the founder of a non-profit organisation called Prematurföreningen Mirakel that supports the healthcare sector in innovative projects while engaging in debates about antibiotic resistance in the media.

With a focus on achieving my goals, I have studied project management at Stockholm University and IHM Business School.

Share your story to make an impact on AMR

Cameron Prior

Cameron Prior

BVSc MSc PgCert CertAVP DipECVIM-CA MRCVS

RCVS Recognised Specialist in Small Animal Medicine

Cameron is a European Diplomate in Small Animal Internal Medicine. Passionate about fungal disease, antimicrobial stewardship, endocrinopathy, and facilitating multiple studies to enhance the evidence base of veterinary medicine. Keen to build collaborative projects with colleagues across Europe and to promote clinical research in practice.

Abi Mc Alester

Abi Mc Alester

I am a graduate from the National University of Galway with an Honours BSc in Pharmacology, and a recent graduate from Maynooth University with a MSc in Immunology & Global Health. Throughout university, I was an active member of the Global Health Network, which was a student-led group focusing on health, equity, and international development. Here is where I became interested in the global impact of AMR and the multiple factors that influence its spread. I chose to focus my studies on the mechanisms behind resistance and vaccination design; however, I understand that in order to have a global impact, there needs to be global awareness.

The AMR Narrative provides lived experiences and stories from those affected by resistance, something I believe is so important and why I wanted to help share these stories on social media. Translating scientific knowledge into digestible and understandable language is critical for fighting resistance.

Nduta Kamere

Nduta is a global health pharmacist and AMR consultant recognised for her leadership in antimicrobial stewardship, One Health, and healthcare equity. She has shaped AMR strategies and advanced healthcare accessibility across Africa, with a significant portfolio that includes contributions to the Commonwealth Partnerships for Antimicrobial Stewardship (CwPAMS) programmes. As Technical Lead, she oversaw the co-development of the Quadripartite Antimicrobial Resistance Toolkit for Youth Engagement, now used globally to drive advocacy and behaviour change.

Her expertise spans supply chains, pricing, and substandard and falsified medicines, and her research is published in the WHO Bulletin and peer-reviewed journals, informing regional and global AMR policy and practice.

Dr Marie-Anne Bouldouyre

Dr Marie-Anne Bouldouyre is an infectious diseases physician and hospital practitioner in Paris. Twelve years of clinical work in a suburban hospital shaped her understanding of access to care, patient relationships, and the daily reality of antimicrobial resistance.

Since 2022, she has led the Regional Antibiotic Stewardship Centre in Île-de-France and coordinates the national network, working with a multidisciplinary team to promote responsible antibiotic use and strengthen collaboration among healthcare professionals. She also continues to manage complex infections at Saint-Louis Hospital.

Convinced that antimicrobial resistance cannot be tackled by healthcare workers alone, she advocates for the active involvement of patients : understanding, questioning, and taking part in decisions about antibiotics. Their stories are essential to making this issue visible and concrete.

She is proud to collaborate with initiatives such as The AMR Narrative and hopes to foster similar projects in France to give patients a voice in this shared fight.

Dr Erva Cinar

Dr Erva Cinar is a London based paediatric resident doctor and clinical researcher with interest in infectious diseases.

She is currently completing a Master’s in Public Health at the London School of Hygiene & Tropical Medicine. Through the World Medical Association’s Junior Doctor’s Network (WMA-JDN) AMR Working Group, she engages in policy and advocacy on antimicrobial resistance and stewardship at global level.

Alongside her clinical and academic roles, she works with the Royal College of Paediatrics and Child Health (RCPCH) and the International Child Health Group (ICHG); leads on organising teaching resources and educational events to improve research skills for UK paediatric trainees and for global child health professionals.

Hamu Madzedze

Hamu Madzedze is a seasoned Zimbabwean journalist with over 15 years’ experience.

She previously worked for the Zimbabwe Broadcasting Corporation as a reporter and sub-editor, before establishing an independent website, 365HealthDiaries, which focuses on health and gender issues.

She holds a BA in Media Studies and a BA (Special Honours) in Communication and Media from the Zimbabwe Open University, as well as a diploma from the Christian College of Southern Africa.

Her work has been recognised with several awards, including the Global AMR Special Mention Award (2024), the Sexual Health Rights and Equity Fellowship Special Mention Award (2025), and the Merck Foundation Award (2024) for outstanding coverage of health issues, gender, infertility, and genital mutilation, where she achieved third position in the Online Category.

Hamu is passionate about addressing AMR through the media.

Jomana F. Musmar

Dr. Jomana Musmar is a distinguished global policy expert and proactive leader with over fifteen years of government experience in strategic planning, operational design, and policy execution. Renowned for simplifying complex topics with expertise and diplomacy, she has spearheaded innovative solutions to global health challenges, shaped impactful policies, and advanced national and international missions.

As the Executive Director of the Presidential Advisory Council on Combating Antibiotic-Resistant Bacteria, she established and led the council’s operations, liaising with over 600 experts, worldwide, across government, industry, and academia. Her efforts culminated in the development of critical recommendations addressing antimicrobial resistance and interrelated One Health issues, influencing both domestic and global health strategies.

In her tenure as Deputy Director of Strategic Initiatives for the Office of Infectious Diseases and HIV/AIDS Policy, at the US Department of Health and Human Services, Dr. Musmar oversaw the formulation and implementation of national health strategies for vaccines and a range of infectious diseases including HIV/AIDS and viral hepatitis. Her leadership and technical expertise facilitated groundbreaking policies during national emergencies, including responses to the COVID-19 pandemic, and initiatives to combat congenital syphilis and childhood vaccination disruptions. Dr. Musmar holds a Ph.D. in Biodefense from George Mason University, a Master’s degree in Biomedical Science policy and Advocacy from Georgetown University, and is a Lean Six Sigma Black Belt. Fluent in English and Arabic, she is a sought-after speaker and advisor, having represented the United States at premier global health conferences.

Her published works on antimicrobial resistance, pandemic preparedness, and national health security underscore her reputation as a thought leader and innovator in public health and biodefense.

Chris Shaffer

Chris Shaffer was a music, special education teacher, and high school principal for 45 years. At the end of his educational career, he was thrust into the world of AMR infections when a number of abdominal surgeries left him with an E-coli infection which failed to respond to antibiotics. After doctors in the USA left him with little hope for a cure, diminishing health, and a bleak prognosis, he set out on his own.

Chris found success in phage therapy at the Eliava Phage Therapy Center in Tbilisi, Georgia. With phage therapy giving Chris his life back, he has dedicated his retirement years to advocating for and helping raise awareness of phage therapy used for AMR infections. He tells the story of his phage journey in a book titled, Finding Phage: How I Partnered with a Friendly Virus to Cure My Deadly Bacterial Superinfection. His website, phagetherpyusa.com helps others learn to understand the healing power of phage therapy.

Demi Christofi

Demi is an Associate Scientific Director at a medical communications agency, with a background in microbiology and a longstanding focus on antimicrobial resistance. She holds an MSc in Microbiology, where she first became interested in the global challenge of resistance and the need to bring scientific understanding to wider audiences.

Demi’s career has centred on a simple but powerful belief: that how we communicate science matters. Her work focuses on making complex data clear, engaging, and accessible – whether for healthcare professionals, policy makers, or the patients most affected by infection and resistance. She has contributed to a wide range of AMR-focused projects, including educational programmes, congress communications and stewardship initiatives.

A central thread in Demi’s work is the importance of the patient voice. She is passionate about making sure real-world experiences of treatment failure, recurrent infections, and the anxiety surrounding resistance are not lost in the data. She believes that listening to patients and involving them meaningfully is essential for shaping more effective, human-centred responses to AMR.

Demi is also a strong advocate of the One Health approach, recognising AMR as a complex, interconnected issue that spans human health, animal health, and the environment. She is particularly drawn to efforts that move beyond siloed thinking and focus on practical, joined-up solutions.

In 2025, Demi joined The AMR Narrative as an Independent Advisor, where she supports the charity’s mission to centre communication, community, and inclusion in the global AMR response.

Outside of work, she is a Girlguiding unit leader and a qualified yoga teacher. These roles reflect her commitment to care, learning, and creating supportive spaces for others.

Andrea Hartley

Andrea has worked in health communications and campaigning for 3 decades. She is committed to fighting AMR through timely and appropriate communications globally,.

Andrea set up Skating Panda, the creative social and environmental impact consultancy, over a decade ago and drives its impact and growth. Focused on original and lasting public interest communications as well as issue strategy and advocacy, the Panda team has a track record of prompting tipping points in the status quo that drive better social and planetary outcomes.

Andrea’s combination of commercial marketing and development experience with deep issue knowledge have been sought by decision-makers at global summits, corporate and NGO board members, and have enabled her to set up multi-million fundraising platforms and push through policies that change and save lives. 

Andrea is Vice Chair of mothers2mothers, the world’s largest employer of women living with HIV, and a Board Director of Maymessy, a food poverty social enterprise.

A lifelong advocate for gender equality, she played a key role in establishing the UK’s Women’s Equality Party.

Esmita Charani

Professor Esmita Charani is a pharmacist and researcher investigating how we use antibiotics in different cultural and social contexts. She works with teams in the UK, India, and South Africa to develop research programmes investigating all aspects of antimicrobial resistance in human populations with a focus in hospital settings.

She has experience in communicating her research with patients and the public through various media including animations, blogs, and educational videos.