This is my first post. I may be slow to keep posting here as I also focus on the Butterfly Project and work with parents. But, please stick with me, and help me share what you know, and your insights on NICU nutrition, to the Global Majority.I want to share content for all things NICU nutrition related especially with a view for global collaboration. I want YOU to help me make a difference to the sick newborns in LMICs.I want to learn how best to translate knowledge to, and share good practice and evidence with less well resourced settings. I want to find out what works in your settings, and what ideas and solutions you have. Our practice in High-income country (HIC) settings is guided by systematic reviews, RCTs and years of experience, but translating that to resource limited settings is challenging. The risks and benefits of faster/slower feeding is context dependant and impacted by population differences (higher rates of IUGR), baseline infection rates and available resources (e.g. PICCs). Let’s be honest, we are all guided by Cochrane etc. but 90% of what we practice is experiential. Show me a single successful RCT powered on a primary of NEC and I’ll buy you lunch. An intervention that is beneficial in HICs (high quality probiotics) could be lethal in LMICs.My clinical career (qual. MBBS 1990) has been in a well resourced setting - the UK, where we care for babies from 22 weeks and 400g with unrestricted access to PN, intravenous lipids, supplements, minerals and fortifiers, as well as biochemistry, dieticians and high nurse:patient ratios.I’ve published hundreds of papers, many of which individually probably made little difference to clinical care, but cumulatively I hope added to our understanding of nutritional needs and practice.I then imagined that in resource limited settings where I’ve been fortunate to visit, such as Kenya, Latin America, Philippines, most preterm babies <28 weeks or <750g wouldn’t survive. However, even in settings such as Kenya, where there were no ventilators or surfactant, no PN, no fortifiers, I saw babies born at 25-26 weeks weighing 600-800g surviving just on Mother’s Own Milk, MOM and good nursing care (warmth, infection control, Kangaroo and milk).However, a lack of access to routine biochemistry (sodium), supplements (calcium but no phosphate) and fortifiers results in universal growth faltering. Whilst I strongly believe that slower growth on MOM is preferable to faster weight gain on formula, there will be a point at which slow growth is a marker of inadequate nutrients for optimal brain growth. Humans are naturally innovative, and there are many local approaches that have been developed, but most have not been rigorously tested. Studies have explored high volume feedings (200-240ml/kg/day), energy supplements such as olive oil, MCT etc. and in some settings where access to breastmilk fortifiers is expensive, formula milk powder is added although of course the final milk composition given is always sub-optimal. In other settings, in-hospital access to formula and fortifier is effectively prohibited because of rigid adherence to BFI. We can all see the benefits of BFI culture, but the adverse growth impact on individual VLBW feels wrong.There may be many babies 1250-1500g who will do fine with high volume MOM, some extra sodium and lots of KMC, below that I’m not so sure.Is it really possible for a <1000g baby to grow optimally just on breastmilk?Also posted here on Substack.

The interactive scientific programme for CEPAS 2026 is now online, and if you haven't explored it yet — check out https://www.cepas.org/scientific-programme. Built on more than 15 years of collaboration between the European Academy of Paediatrics, the European Society for Paediatric Research, and GFCNI, the CEPAS programme brings together science, clinical practice, advocacy and paediatric training in one place. Sessions, topics, networking opportunities — it's all there, and it's a lot.Which brings us to a question we've been thinking about. With a programme this rich, how do you actually navigate a conference? Do you plan every session in advance or follow your instincts on the day? Do you wander beyond neonatology or stick to what you know? Paper programme or app — or both, just in case?We're genuinely curious how the 99nicu community does it. We've put together a quick poll — it takes two minutes, the results are live, and we'll be sharing them at our session at CEPAS in October.Because let's be honest - everyone has their own system. Or complete lack of one...Share your approach in the comments too — we want to know if the 99nicu community is a meticulous-colour-coded-schedule crowd or a go-where-the-wind-takes-you crowd. Probably both. Probably at the same time.Hope to see you in Lyon!- Kat from 99nicu.org

We are excited to share news that 99nicu.org has begun collaborating with NeoIPC, a European Union-funded initiative addressing hospital-acquired infections and antimicrobial resistance in neonatal units.What is NeoIPC?Nearly 1 in 10 European newborns requires NICU admission in their first days of life, which can expose them to antibiotic-resistant bacteria.NeoIPC is a European Union-funded research initiative focused on improving infection prevention and control (IPC) in NICUs. The project brings together an international network of clinicians and researchers to develop innovative, evidence-based strategies to reduce the transmission of resistant bacteria in premature newborns. It integrates clinical research, implementation science and surveillance to better understand infection patterns and improve IPC practices across neonatal care settings.Moreover, through an innovative study named NeoDeco, NeoIPC is also evaluating if the implementation of optimised kangaroo care can reduce severe neonatal infection, sepsis and resistant bacterial colonisation in high-risk newborns in the neonatal intensive care unit.NeoIPC has also developed standardised surveillance methods focused on healthcare-associated infections, multidrug-resistant organisms and antibiotic use in neonatal care. Participation in the NeoIPC Surveillance is completely free and open to neonatal care sites worldwide. The NeoIPC Surveillance Network already includes 25 partner sites across Europe and Africa, working together to improve infection prevention and surveillance in neonatal care. More about the NeoIPC surveillanceFinally, NeoIPC places strong emphasis on the perspectives of families. "NICU Journeys" is a video series that captures and amplifies the voices of parents, sharing their experiences, concerns and hopes, and highlighting their essential role in the care of their premature babies. More about NICU JourneysWhy This Matters to Our CommunityNeoIPC aims to connect units together in a global Clinical Practice Network, encouraging greater involvement of units in infection prevention planning and delivery. This aligns well with what we do at 99nicu.org—connecting professionals across borders to share practices, learn from each other, and improve neonatal care.Meet the NeoIPC LeadershipThe project is led by :Julia Bielicki, NeoIPC Scientific Coordinator, University Children’s Hospital Basel (UKBB), Switzerland; City St George’s, University of London, UKTuuli Metsvaht, Chair of the NeoIPC Clinical Practice Network, Professor of pediatric and neonatal intensive care, Head of the Clinic of Paediatrics Tartu University Childern’s Hospital (Estonia)Annika Tiit-Vesingi, Deputy Chair of the NeoIPC Clinical Practice Network, Head of the Neonatology department Tartu University Children’s Hospital (Estonia)Brar Piening, NeoIPC Surveillance lead, Member of the NeoIPC Clinical Practice Network Steering Board, Deputy director of the Institute of Hygiene and Environmental Medicine at Charité – Universitätsmedizin Berlin (Germany) Chiara Minotti, Member of NeoIPC, MD, Paediatrician, PhD candidate in Clinical Research (University Children's Hospital Basel, Switzerland)You can learn more about NeoIPC in the club space they are hosting in the 99nicu NeoIPC Club. You can freely join the club to stay in touch and get notified when new content is being shared.Join us in warmly welcoming NeoIPC to 99nicu!Kat from 99nicuJulia BielickiProfessor Julia Anna Bielicki is a Professor of Paediatric Infectious Diseases at City St George’s, University of London, Professor of Paediatric Clinical Pharmacology at the University of Basel. Julia trained in Social and Political Sciences and Medicine at the University of Cambridge, where she graduated top of her year, and holds a Medical Doctorate from the University of Zurich, as well as an MPH and PhD from the London School of Hygiene and Tropical Medicine. Her research focuses on optimising antibiotic use in neonates and children and developing innovative infection prevention and control strategies across high-income and low- and middle-income country settings. She has led and co-led multiple randomised controlled trials, including cluster and platform trials, funded by organisations such as NIHR, Horizon 2020, EDCTP, IMI and the Wellcome Trust, with the aim of generating robust evidence to inform clinical practice and health policy in the context of rising antimicrobial resistance.Tuuli MetsvahtTuuli Metsvaht is a paediatric and neonatal intensive care doctor in Tartu University Hospital, Estonia, with over 25 years of experience in the field. She is also Professor of paediatric and neonatal intensive care and pharmacotherapy in the University of Tartu, Estonia. Her interest has been in developemntal pharmacology with specific focus on PK and efficacy studies of antimicrobial therapy in neonates. She has worked in several EU-funded International projects like NeoMero, NeoVanc, ALBINO. Other fields of interest include early cardiovascular support in postnatal adaptation,  excipients use in neonatal drug formulations (Era-Net funded International Project ESNEE). Currently she is involved in postnatal colonisation studies in NICU with specific focus on family centred care and development and implementation of novel infection prevention and control measures in NICU in the NeoIPC Project.Annika Tiit-VesingiAnnika Tiit-Vesingi is a paediatrician at Tartu University Hospital in Estonia with over 20 years of experience in the field of neonatology. She currently serves as the Head of the Neonatology Department at the University of Tartu, where she plays a key role in both clinical care and academic development. Her main areas of interest include neonatal feeding, family-integrated care, and advancing the concept of the “golden first hour” for all newborns to improve outcomes. In addition to her clinical and leadership work, she is actively involved in research on postnatal colonisation in neonatal intensive care units, with a special focus on promoting family-centred care practices.Brar PieningBrar Piening is a senior physician and deputy director of Charité's Institute of Hygiene and Environmental Medicine, board-certified in hygiene and environmental medicine. He is responsible for infection prevention and control at Charité's Campus Virchow-Klinikum and has worked in HAI surveillance, antimicrobial resistance, and antibiotic use for more than 20 years. He is the scientific coordinator of NEO-KISS, Germany's national surveillance system for nosocomial infections in very low birth weight infants and leads the MEASURE work package of the EU-funded NeoIPC project, where he coordinates the development and operation of a multinational HAI surveillance system for high-risk neonates. His research spans the epidemiology of healthcare-associated infections in vulnerable patient populations, with a focus on neonatal infection outcomes, antibiotic use, and the design and evaluation of surveillance systems. Chiara MinottiChiara Minotti is an MD and a NICU‑trained, board‑certified paediatrician (University of Bologna and Padova University Hospital, Department of Women's and Children's Health, Italy). She previously worked as a neonatologist and clinical researcher at the Department of Neonatology, Modena University Hospital, Italy, and was involved in large, EU‑funded international projects (PedMERMAIDS, GBS‑PREPARE). She is currently a PhD candidate in Clinical Research at the University Children’s Hospital Basel, Switzerland. Her research focuses on innovative strategies for the prevention and management of infections in neonatal intensive care units, within the NeoIPC and NeoSep ADAPT projects. 

Sweden is a good country to be born extremely preterm. Neonatal intensive care is centralized and pretty much equally organized, and outcomes are regarded as good and similar throughout the country. Like in most other European countries, the welfare system enables equal access for all, practically at no cost for families.Sweden has been at the forefront of the slide of the ”window of viability”, i.e. at which gestational age extremely preterm infants are offered intensive care. I don’t know how this came about, but I think we, i.e. Swedes, have an unusually high trust in society and experts, and we seem willing to ”try and see how it goes” as we count on societal support if problems arise later. If you want to see this from the another angle, one could also regard the Sweden as a bit patriarchal, where people follow top-down advice and form their own opinions and decisions to a lesser extent.As of today, our cutoff between miscarriage and live-birth is at 22+0 weeks, and our national guideline from our Neonatal Society states that mothers with threatening delivery at 22 weeks should be transferred to a regional university hospital and active care should be considered.This current strategy is however on the radar for re-evaluation. The Swedish National Council on Medical Ethics, an independent body within the Government offices, recently issued a thorough report about the care of infants born at 22 weeks. The main take homes are that 1) comfort care without a life-saving intent should be the primary strategy, and that 2) parents have a right to be engaged in a true shared decision-making process. The Council suggests that the Swedish National Board of Health should develop a new national guideline taking their conclusions into account.While this medico-ethical report have already been discussed a lot, even in national public media, I foresee this is only the preamble to a more challenging and painful (and potentially dirty!) debate between the opposing sides of this fence. There will be different opinions and arguments not only from professional representatives and parents, but also politicians, philosophers and many other stakeholders will probably express their various positions. Whether that future debate will be in the best interest of infants born at 22 weeks, we’ll see.With this long introduction, I would like to high-light this paper in Journal of Pediatrics, about Quality of Life in Swedish adults born extremely preterm. In short, the paper is based on the so-called ”1000g-study” including a cohort of ELBW infants born in Sweden in 1990-92. While the paper reports more disabilities in adulthood in those born ELBW, the perception of quality of life was no different compared to a term-born control population. And the press release concludes that ”..these findings provide the best available assessment when giving information today to parents of extremely premature children...”If one only reads the press release and abstract, it all sounds good! But can those findings really be generalized to extremely preterm infants born today? I doubt that.First of all, as shown in the study population flow chart, only half of the eligible survivors completed the QoL survey (168 of 345). If one goes to the Tables, the responders seems to be a much healthier subpopulation, at least there are big differences in disability rates between responders and non-responders. For example,- cerebral palsy was twice as common in non-responders (14.1% vs 6.5%)- epilepsy and visual impairment was four times more common (9.4% vs 2.5%, and 4.7% vs 1.0%)- non-responders had two-three times more often intellectual development disorders (17.1% vs 4.5%), attention disorders (18.8% vs 9.5%) and autism (15.9% vs 6.0%)So, even if the QoL surveying of responders had good internal validity, there are good reasons to question the external validity. Would non-responding ELBW adults with much higher rates of neurological diagnoses score their QoL as high as healthier group responders? The truth is that we don’t know.The main question when it comes to generalizing to today’s ELBW context is however something else, related to a more basic fact. Who are the survivors in the Swedish ”1000g-study”?Neonatal intensive care has indeed improved since then. Today, there is generally a high chance to survive extremely preterm birth. In infants born at 24 weeks and onwards, survival is what we expect, right? But what was the survival in ELBW infants in the early 1990s?The original publication of the ”1000g-study” illustrates how much different the situation was in the early 1990s, see the mortality rates per gestational week in the graph. The overall infant mortality rate was 48% in infants born at 23-27 weeks, and the subgroup of 23-24 week infants had a 80% mortality rate. Furtermore, quite many infants were coded as still-born these days, and one can wonder about the degree of potential mis-classifications there. For example, in week 23, there were 47 live-born (of which 43 died during infancy) and 76 infants were classified as still-born. Naturally, the original cohort included no infants born at 22 weeks.So, the way I read the paper about QoL in ELBW adults born in the early 1990s, is mostly that the outlook is fine for those born at 26-27 weeks, especially in those not impacted by significant neurological morbidities later in life. Which is indeed re-assuring, those infants represent the largest group of extremely preterm infants.However, there remains such a large gap of knowledge about the long-term trajectories for our ”nano-preterm” infants in our NICUs. The sloppy saying goes that ”More research is needed”, but in this case we have an obligation to aggregate structured long term data about health and disease in those surviving the ”window of viability”. Without knowledge, we will keep struggling how our actual clinical work can align with the best interest of our most vulnerable patients and their families.

On May 11, 2026, 99nicu turns 20. It’s a moment that feels deeply meaningful to me.When I shared the very first words on 99nicu back in 2006, and celibrated our first birth day in 2007, the idea was simple: to create a web-based space where NICU staff could “share and care.” This was before social media as we know it today, when like-minded people gathered on bulletin boards in the era of what we then called Web 2.0 (Wikipedia), guided by the belief that “information wants to be free.” (Those really were the days!)And yes, our first logo was… not too bad 🙂Much of my inspiration back then came from 99mac, a community I was part of, where Mac users helped each other with all kinds of IT-related challenges. It made me think: why shouldn’t NICU staff have something similar? As a young neonatal specialist at the time, I was eager to connect beyond my own unit. But with demanding shifts, traveling to conferences was rarely possible.Since 2006, 99nicu has gone through many phases, from the early “just do it” years, through quieter periods, to where we are today: a full-fledged community with this website, conferences, webinars, and even the NICUVERSE, our own social media feed based on Mastodon.Over the years, our community has grown into something greater than a website. It’s a place of generosity, curiosity, and support. I’ve seen colleagues from around the world come together to discuss complex cases, challenge ideas, and stand by each other during difficult moments.For me personally, 99nicu has been an incredible journey. I’ve learned so much from all of you, and I feel truly grateful to have been part of building and nurturing this community together. Your willingness to share knowledge and perspectives, with the common purpose of improving care for newborns and their families, is such a source of inspiration. It’s also a powerful reminder that there is still a lot of good in the world.To everyone who has contributed over the past 20 years, whether by asking a question, sharing an insight, or simply being present, thank you ❤️ You are what makes 99nicu what it is.As we celebrate this milestone, I’m excited about what lies ahead. The need for connection and collaboration in neonatal care is as important as ever.With gratitude, StefanPS. As a non-profit organization registered with the Swedish Tax Agency, we rely on community support. If you find value in 99nicu, please consider contributing an annual fee of 10 EUR, just click here!