Born Too Soon: How Real Stories Can Change Preterm Care

Every two seconds, a child is born too soon. Behind every case is a deeply personal story that deserves to be heard. Preterm birth is not just a medical challenge; it’s a human one. A global campaign called Born Too Soon, coordinated by the Partnership for Maternal, Newborn, and Child Health (PMNCH), has shown how storytelling can be a powerful tool to raise awareness and drive change. A recently published article reflects on this campaign and explores how personal narratives from affected families and health workers were ethically collected and shared. The Global Foundation for the Care of Newborn Infants (GFCNI) was actively involved in shaping this initiative, with Silke Mader, Chair of GFCNI, contributing as a co-author of the article and a key voice within the campaign. By amplifying these lived experiences, the article and the campaign together call for compassionate, family-centered care and stronger global action on preterm birth.

Telling personal stories is one of the most powerful ways to shine a light on the struggles families face when a child is born too soon. Every year, more than 13 million infants are born preterm worldwide. These early births can bring emotional and medical challenges for families, especially when healthcare systems are under pressure or social support is limited. Families often feel isolated or misunderstood – and their stories are often left untold.

The Born Too Soon campaign set out to change that by collecting and sharing personal stories from parents, caregivers, and health workers. These stories offer real-life perspectives on the emotional, physical, and social impact of preterm birth. With the help of ethical storytelling methods, participants shared their journeys openly and honestly. The aim was not just to inform but also to build connections and drive action.

Sharing Pain, Resilience, and Hope: Stories from Around the World

The campaign gathered ten stories that reflect the wide variety of preterm birth experiences across continents, income levels, and outcomes. For example, Jayme was born at just 23 weeks in Japan, weighing only 680 grams. His father shared how their son battled severe health issues, including a tumor, but eventually thrived thanks to medical care and strong parental support. Ashley, a teenage mother in Kenya, gave birth at 30 weeks and faced social stigma, health struggles, and financial challenges. Despite it all, she persevered and even completed her exams shortly after giving birth. In the U.S., Staci endured the trauma of multiple pregnancy losses due to an infection but went on to give birth to healthy twins after receiving proper care. These stories reveal how difficult the journey can be, but also how families can overcome incredible odds.

In addition to these core stories, the campaign highlighted how essential compassionate, family-centered care is, particularly when health systems are overstretched. Parents expressed how being heard, supported, and involved in decisions made a crucial difference. The stories also emphasized the role of health workers and the emotional toll they face when care resources are lacking, or outcomes are uncertain.

Why Storytelling Matters for Families and Health Systems

The Born Too Soon storytelling campaign did more than share experiences. It also provided guidance on how to collect stories respectfully and ethically, ensuring participants felt in control of their narrative. This is especially important when dealing with sensitive topics like loss or trauma. The stories helped create a more inclusive picture of preterm birth, giving space to voices often left out of global health conversations. Parent support groups played a vital role in connecting storytellers with the campaign.

These stories not only offer hope and connection to other families but also push healthcare systems and policymakers to rethink their approach to maternal and newborn care. By listening to those with lived experience, society can better support those affected and promote change that puts families at the center.

Paper available at: Born Too Soon: Every story counts: lessons in ethical, inclusive storytelling from born too soon | springermedizin.de

Full list of authors: Kinney, M.V.; Reid, A.; Juma, M.; Gruending, A.; Bolaji, O.; Mollel, D.; Suguitani, D.; Mader, S.; Walker, K.; Temmerman, M.; Lawn, J.

DOI: https://doi.org/10.1186/s12978-025-02068-0