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Community

Featured Entries

CEPAS

99NICU Becomes a Partner of the CEPAS Conference 28-31 Oct 2026

We are pleased to announce that the 99NICU Community has become an official partner of the CEPAS Conference, 28-31 Oct 2026. CEPAS is an international conference dedicated to advancing knowledge and collaboration in neonatal and pediatric care, a new biennial meeting of the European Academy of Paediatrics (EAP) and the European Society for Paediatric Research (ESPR). In addition, the Global Foundation for the Care of Newborn Infants (GFCNI) is co-organiser. Through this partnership, 99NICU will
99nicu

🎉 20 Years of 99nicu 🎉

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 r
Med Ed, AI, Technologies

When the Answers Arrives Before the Questions

There's a scene that keeps coming back to me since I heard Professor Madalena Patrício, of the University of Lisbon's Faculty of Medicine, speak about artificial intelligence in health professions education. It isn't a scene from her talk, exactly — it's from Pluribus, a series I watched recently that, somehow, found a new way to be read in light of what she said. In the show, a signal from space carries the code of a virus that fuses almost all of humanity into a single consciousness. At first
nutrition

Preterm infants need more energy than cycling the Tour de France

Previous posts described that very preterm infants ex-utero are ‘programmed’ to grow at a similar rate to the fetus before birth, gaining about 2g/kg/day of protein (as well as gaining fat, water, minerals etc. etc.). A 25 week infants increases her birthweight by more than 400% (500g to 2500g) over 3 months of NICU stay. Thankfully, that rate of weight gain isn’t sustained into early infancy and protein needs dramatically reduce as the fetus/baby approaches term. Breastmilk alone cannot meet pr
Preterm birth

Quality of life in adults born extremely preterm - and large gap between what we know and what we need to know

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
Med Ed, AI, Technologies

When the Answers Arrives Before the Questions

There's a scene that keeps coming back to me since I heard Professor Madalena Patrício, of the University of Lisbon's Faculty of Medicine, speak about artificial intelligence in health professions education. It isn't a scene from her talk, exactly — it's from Pluribus, a series I watched recently that, somehow, found a new way to be read in light of what she said. In the show, a signal from space carries the code of a virus that fuses almost all of humanity into a single consciousness. At first
Neonatal Butterfly Project

We're triplets, not twins

I want to share parents and siblings’ stories of love and loss, to raise awareness of the complex and lifelong nature of baby loss, and to help healthcare professionals better understand some of what parents feel. We will never really know what it feels like, but listening and reflecting makes our jobs more rewarding, changes the way we act and behave, and helps us provide better support to parents. Genevieve contacted me via the Butterfly project website after she received a purple butterfly on
Palliative Care

The Care That Dares Not Speak Its Name

This week I cared for two pediatric patients, both under two years old, each diagnosed with a severe inborn error of metabolism carrying a limited, though uncertain, prognosis. For both families, I recommended a consultation with the pediatric palliative care team. In each case, the parents visibly recoiled at the word “palliative” — a reaction that underscored how far we still have to go in improving care for children with complex chronic conditions. A brief note on my own background may help c
Neonatal Butterfly Project

It's the little things that count.

Trigger warning - discussions about babies dying. Trust in the medical profession is the foundation of effective healthcare systems, directly influencing adult patients’ willingness to seek care, disclose confidential & highly sensitive information, and comply with treatments. Human connections are what builds that trust. In the NICU it’s a bit different because the first human connections often happen around admission, which is often unexpected, sudden and dramatic. Connections we form in
Neonatal Butterfly Project

I seen two babies on that scan. I wanted two babies.

Most of us are fascinated by how different or similar twins are. I often use ‘twins’ as shorthand for ‘twins, triplets and more’ but fully recognise the unique challenges of a loss in higher order pregnancy. I know several families who had triplets and either one or two babies died; I will ask some parents to share their stories and the unique challenges faced by loss in a higher order pregnancy. To find out why people feel a twin pregnancy is special, we need to speak to them. How did we do the
Neurodevelopment

Do They Remember? What Neuroscience Says About Infant Memory and the Voices in the NICU

One of the best parts of working in the NICU is the visits we receive from families who have graduated and come back with their growing, glowing babies. During these visits, I was always puzzled by the fact that some of them — especially the ones I worked more closely with — seemed to recognize my voice and would even award me with a smile. I do have the habit of chatting with my patients, and since I used to work every weekday in the mornings, those babies heard my voice a lot. But still: would
nutrition

Preterm infants need more energy than cycling the Tour de France

Previous posts described that very preterm infants ex-utero are ‘programmed’ to grow at a similar rate to the fetus before birth, gaining about 2g/kg/day of protein (as well as gaining fat, water, minerals etc. etc.). A 25 week infants increases her birthweight by more than 400% (500g to 2500g) over 3 months of NICU stay. Thankfully, that rate of weight gain isn’t sustained into early infancy and protein needs dramatically reduce as the fetus/baby approaches term. Breastmilk alone cannot meet pr
Neonatal Butterfly Project

Twin loss. At least you've still got one.

Parents' views and experience of baby loss in a multiple pregnancy. Acknowledgement is key. PParents who had a multiple pregnancy where one or more babies died, but where one (or more) babies survive, face unique challenges. Our research identified many themes - mostly centred around acknowledgment. Acknowledgement that this was/is a multiple pregnancy a baby died - and most often had a name (and not “twin 2”, or a “9-week fetal loss”) there is a juxtaposition of grief for the baby/s who died,
nutrition

Breastmilk protein in cows and humans

The process of evolution resulted in breastmilk perfectly suited to the survival and developmental needs of the newborn of that species. Mammalian milk composition varies during the day, and over the days, weeks and months of breastfeeding. All species vary in macronutrient, micronutrient and bionutrient composition. Bionutrients (also known as immuno-nutrients, or functional components) are key to many of the benefits of getting the ‘right’ breastmilk, and there are 1000s of them - we’ll get to
Neonatal Butterfly Project

Elvis Presley & Cristiano Ronaldo - twins, butterflies and baby loss

More than 15 years ago I started working with a team to explore parent feelings and experiences about the time when the NICU team felt it appropriate to discuss the option of withdrawing/stopping active intensive care for their sick baby. The research ethics committee were hesitant suggesting that we might upset parents if we reminded them their baby had died … I found the research experience deeply humbling on many levels, and I learned much more in that study than I expected. I learned from ac
Neonatal Butterfly Project

Baby Loss & the meaning of life

All about me! I qualified MBBS 1990, started paediatrics 1991, & did my first NICU job 1992. I was utterly terrified those first few weeks, but worked with some brilliant nurses who looked after me, and an inspirational consultant Edmund Hey - one of the pioneers of neonatology (seminal work on resuscitation and thermal management in the 1960s!). We worked long hours as SHOs (residents) - 24 hours on, 24 hours off, for 2 weeks, knew the babies and families inside out, and then 5 daytime shi
nutrition

What's the problem with protein in very preterm infants

I’m still learning about the potential to create an online community of like-minded people interested in improving nutrition and growth in preterm infants, especially in more resource limited settings. But as an introverted academic I struggle to write freely, without constantly over-thinking and feeling the need to continually cite every statement as if writing for academic journals. Anyhow, here goes … Credit to CNN 2023 for the photo - you’ll need to read the follow up post to understand the
nutrition

NICU Nutrition - can a sub 1000g baby grow on breastmilk alone?

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 practi
news

CEPAS 2026 programme is now online- which got us thinking: how do YOU do conferences?

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 b
Preterm birth

Quality of life in adults born extremely preterm - and large gap between what we know and what we need to know

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
99nicu

🎉 20 Years of 99nicu 🎉

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 r
news

A New Society Dedicated to Fighting Newborn Sepsis

Neonatal sepsis remains one of the leading causes of death and harm in newborns worldwide, and it disproportionately affects babies in low- and middle-income settings. This week at the PAS 2026 conference, a new global initiative took its first formal step: the Newborn Sepsis Society held its founding meeting. The Society brings together clinicians, researchers, and partner organizations across disciplines and borders, with a shared mission: to improve outcomes for newborns worldwide by advancin
news

Building Bridges: 99nicu.org Welcomes NeoIPC

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 b
news

Our Global Village Is Calling — Will You Show Up?

How long have you been a member of 99nicu? A year? Five years? Longer than some of your colleagues have been qualified? You might be surprised how far back this community goes. Our 99nicu community has more than 7,000 members from 76 countries. We have been around longer than Facebook has been in Europe, and almost as long as Twitter has existed at all — and despite being "old school", we have persevered. Many predicted that forums would disappear once social media took over. But looking at wher
CEPAS

Submit your Research Abstract to CEPAS now!

The abstract submission deadline for CEPAS 2026 is extended until 15 April! Submit your research now for the opportunity to present your work at the Congress of the European Paediatric Academic Societies, taking place 28 - 31 October 2026 in Lyon, France. Submitting an abstract also gives you the opportunity to apply for prestigious investigator awards: EAP Young Investigator Award ESPR Bengt Robertson Award ESPR Early Career Investigator Prize In addition, ESPR Travel Grants are available fo
News

Why We're Asking You to Log In

TL;DR: What's Changed and Why You might have noticed while browsing 99nicu recently: reading the full discussions now requires you to be logged in. The first post of any thread remain visible to everyone, like the news updates and feeds. But to read replies and join the conversation, you'll need to log in as a member. We know this adds a step. Here's why we're doing it, and how we're working to make it worthwhile. ________________________________________ Why This Matters? For 20 years, 99nicu i
News

Should 99nicu launch a NICU Job Board?

For years, the 99nicu community has been a place where neonatal professionals connect, share knowledge, and support each other in improving care for the smallest patients. But could it also become a place where careers in neonatal care begin or take the next step? We’re exploring the idea of adding a Job Board to 99nicu — a dedicated space where NICUs and neonatal organizations could post job opportunities for nurses, neonatologists, fellows, researchers, and other neonatal professionals. Becaus

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