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Food for thought

A blog by Nicholas Embleton in Community

  • Entries

    19

  • Comments

    12

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    4,330

About this blog

In Food for Thought, I write about premature babies, neonatal nutrition, and the small things that can make a big difference in early life, also including butterflys. This is a place and space for science, stories, and reflections from a 30+ year career spent caring for babies and their families. Please feel free to comment on my posts.

Entries in this blog

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
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
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
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
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
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

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