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Community

Featured Entries

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
news

CEPAS 2026 - one week left at the regular rate, and where to find us in Lyon

Hello everyone, CEPAS 2026 is getting close. The congress takes place in Lyon, 28–31 October, and 99nicu will be there - in the middle of things! Where to find us We have a home base in the Meet & Connect Zone, in the Early Career Professionals' Space. Come by, say hello, ask questions, or just sit down for a moment between sessions. If you have ever posted here, or only read quietly for years, you are equally welcome. Our two sessions 🗓️ Thursday 29 October, 10:10–10:25 — a short introduct
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
nutrition

Brazilian pink breastmilk - let's take a closer look

The colour of breastmilk is rarely a uniform, static white and changes during the day, stage of lactation and maternal diet. Colostrum is often yellow or orange due to high concentrations of beta-carotene. At the start of a pump or feed, foremilk appears ‘thin’, almost watery, sometimes with a blue/translucent tint due to lower fat content whereas hind milk is more typically creamy white or yellow. Maternal diet impacts colour variations. Eating large amounts of foods rich in carotene—such as ca
Wrap

99NICU - the online neonatal community reclaimed

We are approaching the 20 year anniversary of 99NICU and while thinking about our journey, we also came to explore the wider scope, including the feeling of a lost online neonatal community. When I first helped build 99NICU in 2006, it came from a very simple need: a safe place to talk about neonatal care with other health care professionals. Not just to exchange information, like over email, but create a community space to think, question and learn together from real clinical experience. At the
nutrition

Brazilian pink breastmilk - let's take a closer look

The colour of breastmilk is rarely a uniform, static white and changes during the day, stage of lactation and maternal diet. Colostrum is often yellow or orange due to high concentrations of beta-carotene. At the start of a pump or feed, foremilk appears ‘thin’, almost watery, sometimes with a blue/translucent tint due to lower fat content whereas hind milk is more typically creamy white or yellow. Maternal diet impacts colour variations. Eating large amounts of foods rich in carotene—such as ca
Neonatal Butterfly Project

I thought I was going to die

I thought I was going to die There is more than one life at risk when you’re standing at the cot side of your HIE baby. Why do physicians continually seek to crush hope?Nick Embleton I contacted Dani when I was creating an online educational course for healthcare practitioners (see link at the bottom) and she was kind enough to share her story in her previous post about Olivia-Grace available on substack here. Balancing hope with honesty is one of the most delicate challenges we face when dealin
news

CEPAS 2026 - one week left at the regular rate, and where to find us in Lyon

Hello everyone, CEPAS 2026 is getting close. The congress takes place in Lyon, 28–31 October, and 99nicu will be there - in the middle of things! Where to find us We have a home base in the Meet & Connect Zone, in the Early Career Professionals' Space. Come by, say hello, ask questions, or just sit down for a moment between sessions. If you have ever posted here, or only read quietly for years, you are equally welcome. Our two sessions 🗓️ Thursday 29 October, 10:10–10:25 — a short introduct
Neonatal Butterfly Project

I didn't want twins

Elaine’s short story of Henry and Blake is a powerful mix of raw emotion, and some humour, that stopped me in my tracks. Elaine Gregersen I didn’t want twins. When the sonographer at the twelve-week scan said, ‘I’ve got something very special to tell you,’ I wasn’t flooded with love or joy. I was irritated. An internal sigh. A hidden eye roll. I only wanted one. We were 38, not long married, living in an expensive rental and paying off a dodgy hatchback. We’d have to move. We’d need a bigger h
Neonatal Butterfly Project

Twins are born as a we

This is the second article written by Pia Rockström, sister to Maria and Sara. You can read the first article here. Pia. One of the strongest stories I came across during my research on twin loss, when I wrote Living for two, twin loss stories, is the story of a pair of twins in Massachusetts who came to change American obstetric and neonatal care. The premature twins Kyrie and Brielle were first placed in separate incubators to avoid infecting each other if they got infections. Kyrie gained wei
Neonatal Butterfly Project

The raw and unfiltered life of a grieving mother

I want to use the substack Butterfly project to increase awareness not just of ‘twin loss’ in the general public, but also share other stories of love and baby loss. I want healthcare professionals to hear from parents, and not just read my opinions or research experience. I have enjoyed a 35-year career in neonatal medicine, learning lots of science and clinical practice. Listening to parents made an enormous impact, and I want to share that with you. As a resident/fellow or neonatal nurse it i
Neonatal Butterfly Project

Living for two - the grief hides deep inside you

Living for Two: Twin Loss Stories is a 2023 book written by journalist and triplet Pia Rockström. It explores the profound and unique grief experienced by surviving twins, reflecting the feeling of some, of having to live both for oneself and one's lost sibling. I connected with Pia after we met through the Lone Twin Network and read her book including 20 stories of twin loss at birth, in childhood and in adulthood from around the world. All of the stories are beautiful and touching, and I asked
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

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