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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 news

Treasure hunt, networking pressure and a search for connection: come find us at CEPAS 2026

Everybody says conferences are the place to network. But how do you network when you are just starting out? Or when you rarely get to go to conferences? Or when you are coming back after a break, and everyone seems to know each other already? At 99nicu, we are clinicians and scientists at almost every stage of our careers. And, sad to say, we know that feeling quite well. Many of us do more than clinical work: research, teaching, building communities like this one. Yet most of us have stood alon
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
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
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
99nicu News

20 years of 99nicu – and cake! 🎂

A 20th anniversary calls for cake! The core 99nicu Team got together last night after the CEPAS sessions, for a small celebration of these twenty years of sharing, learning and connecting. I wrote in an earlier Anniversary post⁠ that 99nicu began with a simple idea. We wanted to create a space for NICU colleagues to share and learn from one another. That spirit is still at the heart of our community. A big thank you to everyone through our 20y journey. While only the core team made it to this ca
CEPAS

CEPAS neonatology highlights

There are a lot of great NICU and neonatology sessions and workshops at CEPAS 2026 (28–31 October). Here's a list of highlights! Wednesday, 28 October — Pre-congress workshops Time Session / Workshop Main focus Priority 08:30–12:30 Non-Invasive Mechanical Ventilation — Part 1 Practical approaches to non-invasive respiratory support ⭐⭐⭐ 09:00–17:00 Neonatal Cranial Ultrasound Hands-on neuroimaging and interpretation in newborns ⭐⭐⭐ Thursday, 29 October Time Session / Workshop Main focus Priority
99nicu News

Newborn Sepsis Society: Invitation for the Launch Event during CEPAS

Sepsis doesn't wait for a convenient hour, so neither will we. This Friday, 30 October, 08:00–09:00, the Newborn Sepsis Society launches in Europe at CEPAS 2026 in Lyon. Yes, it's early. We promise it's worth the alarm. 📍 Room: St Clair 2 New society, same goal: fewer newborns harmed by sepsis, and more of us working on it together. What to expect: 🔹 Why a new society? Eleanor Molloy, Johan Gyllensvärd and Joanna Seliga-Siwecka (short answer: because babies deserve better, long answer: come and
nutrition

Gandhi & neonatal nutrition

Gandhi is universally admired and respected across the world as one the most inspirational political figures campaigning for independence and civil rights in both South Africa and India; lands that were colonised and ‘stolen from’ for centuries by British rule. By chance I am in India today, on Gandhi’s birthday (Jayanti). I’ve been privileged to present at workshops and give lectures at conferences and NICUs, and been invited to join ward rounds and discuss various aspects of neonatal nutrition
Neonatal Butterfly Project

Because she was never meant to be alone

I met Anna through Footprints Baby Loss, a peer support group for parents suffering death of a baby in a multiple pregnancy. We got to chat online afterwards, and I asked if she would share her story. Anna has worked (amongst other things) as a circus and arts stage manager, firefighter and now works as a bereavement midwife. Anna Pidgeon I first felt my baby move at 19 weeks. Late at night. In a hospital bed. After laser surgery for advanced Twin Twin Transfusion Syndrome, TTTS. The next day a
Neonatal Butterfly Project

She was here: a parent story from Uganda

I met Tracy at a parent summit meeting in 2025 and was inspired by her story, so I asked her to write it so I could share Alyssa and her story of love and loss on my substack platform. By Tracy Ahumuza, Alyssa’s mother and founder of ATTA Breastmilk Community My daughter, Alyssa (Marie) Taha, was born on 2 April 2021, Good Friday. She had a four-centimetre omphalocele, an abdominal wall defect that we knew from very early on would require surgery at birth. [Nick: I’ve put a simple image below fo
mypapers

#mypapers - When drinking too much water during labour became dangerous (#1)

Join me for a walk along my academic memory lane! In a series of posts, I want revisit my papers. My intention is to share a summary of main findings and their impact, if any 🙂 As my academic training was in epidemiology and biostatistics, my niche grew into methodological competence rather being disease orientated. So, you will notice that I have been working with a variety of topics. The very first paper was a result of unexpected clinical observations. In 2002, together with colleagues in Sto
Social media

Let’s talk neonatology - join the conversation in the NICUverse!

Where do you go when you want to discuss a new scientific paper, ask a clinical question, or exchange ideas with neonatal colleagues around the world? For 20 years, we have connected neonatal professionals across borders here in the 99nicu forums. Now, with ⁠NICUverse.org, we also have a space for instant communication – a place for spontaneous conversations about neonatal care, research, and everything else related to our professional lives. Imagine reading an interesting paper, perhaps one tha
99nicu news

Treasure hunt, networking pressure and a search for connection: come find us at CEPAS 2026

Everybody says conferences are the place to network. But how do you network when you are just starting out? Or when you rarely get to go to conferences? Or when you are coming back after a break, and everyone seems to know each other already? At 99nicu, we are clinicians and scientists at almost every stage of our careers. And, sad to say, we know that feeling quite well. Many of us do more than clinical work: research, teaching, building communities like this one. Yet most of us have stood alon
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

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