NEC Awareness Day

May 17th 2020

Most people have never heard of NEC unless their lives or someone they know has been affected by it. We don’t typically associate the bowel as being an organ that can pose a threat to life when things go wrong and in society, we generally aren’t very good at talking about our bowels in the same way we do our hearts, brain and lungs for example. 

Whilst NEC itself occurs in babies to varying degrees and of different outcomes. For many of us, our NEC journeys continue long beyond exiting the doors of a neonatal unit. 

NEC is rare in the general population of babies but more common in neonatal units and is diagnosed in 1 in 250 live births. 

 You may be surprised to learn more babies die from NEC than all of childhood Leukaemia



NEC is mostly seen in premature, low birth weight babies and in much fewer instances of babies born at term

It’s estimated 1 in 10 term babies develop NEC, majority but not all term babies will have underlying problems such as heart conditions and abnormalities of the bowel. 


NEC is Serious 

1 in 4 babies diagnosed with NEC will require surgery



3 in 5 babies that has surgery for NEC will require an additional surgery


3 babies in the UK sadly die from NEC every week

NEC is very individual to each baby 

The NEC UK families have kindly shared their stories which we hope will offer you some insight in to how NEC can be different for each baby. Soon you will be able to click here to read our experiences.

NEC is difficult to diagnose

Currently NEC diagnostic definitions vary greatly. Consensus is needed internationally and, in the UK, how to diagnose NEC to ensure early intervention.

NEC is devastating in the both short and long term for families of mixed outcomes

NEC is scary, it’s very distressing to see a baby go through, NEC has many uncertainties and as families there are questions that can’t always be answered. It’s not uncommon for families affected by NEC to experience repeated setbacks. Psychologically the impact of NEC cannot be measured. 

Join us for NEC Awareness Day on May 17th! and do check back with us as we continue to add more to this section of our website over the coming days!

How to get involved; 


Have you been affected by NEC and would like to share your story to help raise awareness? Please send us a message


Follow us and share on social media platforms, Facebook, Twitter and Instagram. We would love to see your photos, hear why you are supporting NEC Day and learn of anything you or your place of work are doing in support of NEC Awareness Day. Remember to use the Hashtags #NECDay #NECIs


Wear Green and Blue coloured clothing for the day and ask your family, friends and colleagues if they can do the same. 


If you have a space you can decorate in support of NEC Awareness Day click here to use our printable downloads.  


If you own or manage a building that has changeable lighting - light up Green and Blue for NEC Awareness (please drop us a line to let us know if you do) or alternatively light a candle after sunset in honour of all NEC babies.


Love cake? Yes we do too! Why not invite some guests around to share some cake with you.

A small donation towards your treats can make a big difference to tiny bowels. Why not check out our fundraising pages ~ there maybe be something that interests you for later on. 


Please consider making a donation to NEC UK in support of NEC research and practical support for families ~ simply because together we can do so much! 

The bowel is responsible for doing more than breaking down food... 

It absorbs vitamins and minerals

Produces essential vitamins, enzymes and amino acids including our immune cells

Excretes harmful components of food and produces proteins which kill viruses & bacteria


Acts as a defence against pathogens & toxins 


Did you know?

80% of the immune system comes from bowel

The bowel contains more than 500 types of bacteria


There are more than 100 million nerve cells in the digestive tract!

The bowel produces more than 20 hormones.

NEC UK is delighted to announce and would like to say a very BIG Thank you to the following for their support to NEC Awareness 

Birmingham City Council will lighting up the Library of Birmingham in Blue and Green on May 17th!

A big shout out to Councillor Zaffar who is supporting NEC Awareness Day. 
Birmingham City Council are working really hard in making a difference to reduce High air pollution which is linked to low birth weight and premature births. Click here to discover more. 
Check out exciting things to do in Birmingham right here!

Emirates Spinnaker Tower in Portsmouth
will be lit blue on the 16th May in support of NEC Awareness. 

Emirates Spinnaker Tower stands at 170 metres tall! and offers spectacular views over Portsmouth Harbour, the city, the Solent, the South Downs and the Isle of Wight.

See for yourself from one of the fantastic sky-high viewing decks! Click here for more details.

Blackpool Tower will be lighting up in Green and Blue in support of NEC Awareness on 23rd May.

Opening to the public on 14 May 1894 and inspired by the Eiffel Tower in Paris, it is 518 feet tall and is the 120th-tallest freestanding tower in the world! Blackpool Tower is a wonderful place to visit with lots to offer. Check out more here!


NEC is a moving statistic and will differ based on the source. The incidence of NEC varies from country, regions, databases and differs over time. NEC UK focuses on the UK region. NEC statistics are not produced by NEC UK.


NEC - 1 in 250 diagnosed - Allin, B. S. R., Long, A.-M., Gupta, A., Lakhoo, K. & Knight, M. One-year outcomes following surgery for necrotising enterocolitis: a UK-wide cohort study. Arch. Dis. Child. - Fetal Neonatal Ed. fetalneonatal-2017-313113 (2017). doi:10.1136/archdischild-2017-313113  


NEC - In term babies - On this occasion we have quoted a US source as to our knowledge no data exists in the UK. Lambert, D. K. et al. Necrotizing enterocolitis in term neonates: data from a multihospital health-care system. J. Perinatol. 27, 437–443 (2007).


NEC - 1 in 4 babies require surgery and 3 in 5 babies require additional surgery - Allin, B. S. R., Long, A.-M., Gupta, A., Lakhoo, K. & Knight, M. One-year outcomes following surgery for necrotising enterocolitis: a UK-wide cohort study. Arch. Dis. Child. - Fetal Neonatal Ed. fetalneonatal-2017-313113 (2017). doi:10.1136/archdischild-2017-313113 


NEC - 3 babies in the UK die a week - NEC UK Medical Advisory Panel (MAP) 08/05/2019


NEC - difficult to diagnose - Battersby, C., Longford, N., Costeloe, K., Modi, N. & UK Neonatal Collaborative Necrotising Enterocolitis Study Group. Development of a Gestational Age-Specific Case Definition for Neonatal Necrotizing Enterocolitis. JAMA Pediatr. 171, 256–263 (2017).


NEC - devastating short & long term - NEC UK family experiences and Allin, B. S. R., Long, A.-M., Gupta, A., Lakhoo, K. & Knight, M. One-year outcomes following surgery for necrotising enterocolitis: a UK-wide cohort study. Arch. Dis. Child. - Fetal Neonatal Ed. fetalneonatal-2017-313113 (2017). doi:10.1136/archdischild-2017-313113