(1) From Personal Experience to Systemic Advocacy

(2) Addressing AMR in Neonatal Care

(3) Communication and Transparency

(4) Collaboration and Public Engagement

(5) Lessons and Takeaways

(1) From Personal Experience to Systemic Advocacy

Prematurföreningen Mirakel began with my own experience as the parent of premature infants. My water broke in the twenty-fifth week of pregnancy, and I spent three weeks in the hospital before giving birth. At the time of my admission, an infection was discovered but was never specifically identified, and I received intravenous antibiotics for two days. Four days after my daughters were born, both became ill in the NICU, and tests revealed a multidrug-resistant, ESBL-producing Klebsiella infection. Both girls developed sepsis, but they were treated differently. The daughter who survived received four different antibiotics; the daughter who didn’t received two. She was eight days old.

I had not been screened myself, so I had unknowingly carried the infection to my newborns. That experience exposed weaknesses on two sides at once for me. One was how the hospital prevented and traced infection. The other was how it communicated with a family in crisis. I founded Prematurföreningen Mirakel to support other parents, to share what I had learned, and to push for safer neonatal care.

At first, the organization was focused on emotional support for families in neonatal care and on making them aware of AMR. As I kept encountering the same stories of infection-related complications among preterm infants, AMR moved closer to the center of what we do. Today, I run Prematurföreningen Mirakel both as a support network for families and as a public advocate for building AMR considerations into neonatal care. AMR can sound abstract in Sweden’s healthcare debate, but for parents in a neonatal unit the danger is immediate and concrete. That is why I treat resistant infection as a matter for families and for the wider public, not something confined to the clinic.

(2) Addressing AMR in Neonatal Care

Preterm infants are among the most vulnerable patients in any hospital. Because they are so susceptible to infection, most are started on antibiotics almost as soon as they are born. That is necessary, and at the same time it is dangerous. Heavy antibiotic use on neonatal wards fuels resistance, and the resistant infections that follow lead to sepsis and, too often, to deaths that recur on the ward year after year. Long courses carry their own harm too. When a baby receives antibiotics for months, their gut flora changes so drastically that the child’s digestion and general health can suffer well after discharge, often without the parents understanding why.

To reduce that risk, I advocate for practical changes in how neonatal care is organized:

• Establishing single-room neonatal units to prevent hospital-acquired infections;
• Conducting routine screening of mothers and infants for resistant bacteria before transfer between hospitals; and
• Providing education for parents on antibiotic use, infection prevention, and the long-term impact of antimicrobial exposure.

I bring these neonatal and maternal perspectives into Sweden’s AMR discussions by participating in AMR meetings with the Swedish government. I have also taken part in discussions to update the national action plan on AMR, where the people most affected are seldom in the room. Many parents learn nothing about AMR until their own child is harmed by it. Building AMR into parental education and routine hospital communication would let families understand the role of antibiotics and take part in preventing infection.

(3) Communication and Transparency

Much of my work centers on communicating and informing families in the NICU and society as a whole about AMR, working on prevention. Preterm infants are usually placed on broad-spectrum antibiotics immediately after birth, yet parents rarely receive an explanation of why the drugs are needed or what they may mean for the child later on. I see this culture of silence as part of a wider reluctance. Discussing infections and deaths linked to AMR remains hard in Sweden, partly from a fear of blame or damage to a hospital’s reputation, and partly because the death of a child is a subject people would rather avoid.

However, a problem cannot be addressed until it is acknowledged. Through support groups, public storytelling, and participation in health communication campaigns, Prematurföreningen Mirakel helps normalize discussions about sepsis, antibiotic resistance, and the emotional aftermath of intensive care. These efforts have contributed to a broader understanding of how AMR intersects with patient safety and mental health.

I urge hospitals to give families clear, factual information about infection risks and treatment decisions, and to prepare for every situation. Where healthcare providers listen to parents and communicate openly, I have found that it enables families to process their experiences and builds mutual trust. I connect transparency to recovery as well. I left neonatal care with post-traumatic stress that took me years to ease, and I believe honest communication would have helped me heal.

Beyond the hospital, I work to break the silence around neonatal loss. Through lectures, media interviews, and social-media outreach, I speak openly about sepsis, antibiotic resistance, and the grief that follows intensive care, so that families who have lived through it do not feel alone.

(4) Collaboration and Public Engagement

Public engagement sits at the center of what I do. Through media appearances, lectures, and online outreach, I try to explain AMR in plain terms. It need not be complicated, and small, everyday actions such as careful hand hygiene and responsible use of antibiotics let ordinary people be part of the solution. Education cannot stop with professionals and clinicians. At government meetings, I highlight that the general public needs to know what it can do, because people who avoid infection in the first place never need to go to the hospital where they could potentially spread resistance further.

I also advocate for treating non-profits as genuine partners in AMR policymaking. Patient organizations hold knowledge from lived experience that complements the scientific and institutional view rather than repeating it, and much of our work is done unpaid and with little recognition. Including patient organizations like mine more fully in collaborations and in decision-making would keep policy closer to the reality of the people it affects.

(5) Lessons and Takeaways

From my experience and the work of Prematurföreningen Mirakel, I would offer a few broader takeaways:

1. Build AMR prevention and stewardship into neonatal and maternal care, instead of treating resistance as a separate, specialist concern.
2. Support open communication between hospitals and families, both to build trust and to reduce the isolation and self-blame that keep AMR hidden.
3. Include patient and family organizations as partners in national and regional AMR work, drawing on the lived experience they offer.
4. Give families a network and a platform where they can talk about AMR, the loss of a child, premature birth, and how antibiotics affect their children, and where they can find support after leaving the NICU.

My central message is for families who have been through what I have. Many go home never told that their child carried a resistant infection, and many blame themselves in silence. No one should feel ashamed or carry this alone. Speaking up is how patients begin to heal and how the silence around AMR starts to break, and it is also how patients regain power over their own lives.