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Necrotising enterocolitis (NEC): A guide for parents


What is Necrotising enterocolitis?

Necrotising enterocolitis (NEC) is a serious condition, where tissue in the bowel (small and large intestines) becomes inflamed.

NEC can make a baby temporarily unable to take milk, and at its worst it can cause parts of the bowel to become so damaged that tissue within it dies. NEC can affect just a small part of the bowel, or sometimes the whole bowel can be affected.

Is NEC serious?

NEC can be a serious condition. Some babies may need to have some of their bowel removed through surgery. Babies can become sick very quickly with NEC, having seemed well before.

Sadly, some babies will die of the condition.

Who is most likely to suffer from NEC? 

NEC usually affects newborn babies in the first days and weeks after birth. It is more common in premature babies and particularly those born before 32 weeks, those who have a lot of other medical problems, or those who have been unwell before they were born (e.g. not growing as expected).

NEC can also affect babies born at term and who have been otherwise well.  

Can I reduce the risk of my baby getting NEC?

Research shows that breastfeeding your baby can help reduce the risk of NEC. Using breastmilk may also be helpful when a baby is recovering from NEC and is able to start milk feeds again.

If you are not able to breastfeed, you may want to express your milk for your baby. This way, they can still get the benefits of having your milk fed to them through a tube.

Health professionals will be able to help you breastfeed and express. You can also visit our pages on feeding for more information.

What are the symptoms?

There are signs that a baby can show if they’re becoming unwell with NEC. If you notice any of the following signs in your premature or sick baby, you should always seek medical help immediately.

Most babies are diagnosed with NEC whilst in hospital. Health professionals will be aware of signs to look out for, but you can also look out for signs of NEC, and tell your health professional immediately if you are worried.

You know your baby best. If you think something is different or wrong and you are worried about your baby’s health, always speak to the health professionals straight away.

Symptoms of NEC can include:

  • A painful, swollen or discoloured stomach
  •  Being sick (vomiting)
  • Vomiting green liquid (bile)
  • If being fed by a tube, extra fluid in the tube, either from your baby or the food (known as aspirate)
  • Blood in their stools (poo) 
  • General signs of being unwell or fighting an infection:
    • Not feeding as usual
    • Irregular breathing
    • Low blood pressure
    • Or a high, low or unstable temperature

 

Sometimes a baby may become extremely unwell very quickly, and will need a lot of medical care. 

X-rays and blood tests can be used to help confirm if your baby has NEC, and to monitor your baby’s response to the treatment. However, it can be hard to know for sure if symptoms are caused by NEC or other conditions. It is very important to always check with a health professional if your baby is unwell or if you are worried.

What causes NEC? 

Newborn babies who were born prematurely or sick generally have more fragile bowels. It is often impossible to know why a baby develops NEC but many different factors may be involved. 

What is the best course of treatment for NEC? 

If your baby has NEC, or is at risk of developing it, the following treatments may be started: 

  • Stopping feeds – resting the bowel can help recovery
  • Feeding through a long-line (a drip inserted into one of your baby’s veins) will keep your baby nourished while you stop feeds
  • Starting antibiotics to treat infections – bacteria is seen to play some part in the development of NEC
  • If your baby becomes generally unwell, a number of other treatments may be needed, (e.g. help with breathing) 

 Many babies who develop NEC recover with these treatments. However if an area of bowel dies or there is a perforation (hole) in the bowel, further medical treatment may be needed: 

 

  • Laparotomy – This type of operation allows the surgeon to access the bowel by making a small hole. To perform a laparotomy, your baby will be put under general anaesthetic (put to sleep). The surgeon will try to remove the part of bowel that has died and re-join the two healthy ends together. Sometimes it may be very difficult to operate around the stomach area, so a stoma (an opening made on the outside surface of your baby’s tummy with a bag attached) may be created. In this case, your baby would need a further operation at a later time to re-join the bowel together, so that the stoma is no longer needed and the bowel can function as usual. 

 

  • Insertion of a drain - A drain can be put into your baby’s abdomen (tummy) to allow any free air or fluid to drain out. This is often performed if your baby is too unwell for an operation. However sometimes an operation is still be needed at a later point. 

Your baby may need to be transferred to a different hospital which can provide specialist care. For more information about this, you can visit our pages on transfers.

What are the risks? 

Any surgery carries risk, especially if your baby is very sick. The success of the surgery can depend on many things, such as your baby’s general health, and how much the condition has affected them.

If the condition has caused part of the bowel to die, surgery will give your baby the best chance of recovery.

Sadly, some babies will not survive the condition. They may be too unwell for surgery or they may not respond to the treatment given to them. The medical staff involved in your baby’s care should explain all the risks associated with any care they are providing. If you have any worries, you should speak to your baby’s medical team.

What happens after the operation? 

Your baby will most likely:

  • Be connected to a ventilator to help with breathing
  • Be closely watched, and attached to various monitors 
  • Be fed using a long-line in a vein
  • Be given pain relief
  • Need blood transfusions and other medications. 

You should be kept fully aware of your baby’s care, and be able to make decisions with the medical team.  

Caring for a stoma

As mentioned above, sometimes during surgery a stoma may be created to help your baby recover from NEC. When a stoma is created, a small hole will be made during surgery to the front of your baby’s abdomen (tummy). This then allows the bowels to open into a small bag which is placed on the outside of your baby.

If your baby has a stoma, the nurses should teach you how to care for this. If your baby goes home with a stoma, support will be available to you at home.

Sometimes, the stoma may start to slip back into the stomach through the hole, or may fall out. If this happens, your baby will need another operation. 

When can I start milk feeds again?

All babies respond to treatment differently, but it is usually around ten days before you may be able to feed your baby milk again. You will get help from the medical staff in starting to feed your baby again. Sometimes you may need to use a specially prepared formula milk.

Breastfeeding or expressing your milk can be helpful for your baby after they have been unwell, if your baby is well enough. Talk to your health professional if you need help with breastfeeding or expressing your milk.

What might happen after my baby recovers from NEC?

Many babies who recover from NEC do not have further problems. But it is possible that other issues may develop, especially if there has been a bowel perforation (a hole which develops in the intestine).

These problems can include: 

  • NEC coming back (reoccurring)
  • The wound from surgery becoming infected or breaking down 
  • The bowel getting narrow due to scar tissue, either caused by damage to the bowel from the condition, or the operation. If this occurs, another operation will be needed to remove this piece of bowel 
  • Sometimes if a lot of bowel has been removed, this may cause problems with absorbing food, which can affect how your baby grows. If conditions such as short bowel syndrome develop, your baby may need to be given nutrients intravenously (through their vein)
  • Your baby may need further surgery if problems continue

NEC is a serious condition, and sadly, some babies will not survive. For any parent, the loss of their baby is devastating. Health professionals will support you and involve you in the decisions around your baby’s care. You can find information and support on making critical care decisions and bereavement on our website. You can also call the Bliss helpline for emotional support at any stage of your journey with your baby.

In the long term, some research shows that NEC can sometimes have an impact on how some babies’ brains develop. All babies develop differently. In particular, premature babies can take longer to reach some milestones. Your baby’s development will be regularly assessed and monitored by healthcare professionals. This should reassure you that your baby is doing well and also address any concerns you may have.

References

  • Great Ormond Street (2016). Necrotising enterocolitis. [online] Available at http://www.gosh.nhs.uk/medical-information-0/search-medical-conditions-0/necrotising-enterocolitis  [Accessed 5 January 2017]
  • Action Medical Research (publication date unknown). Necrotising enterocolitis. [online] Available at https://www.action.org.uk/necrotising-enterocolitis [Accessed 5 January 2017]
  • Patient.info (2016). Necrotising enterocolitis. [online] Available at http://patient.info/doctor/necrotising-enterocolitis [Accessed 5 January 2017]
  • Rees CM, Pierro A, Eaton S et al. (2007). Neurodevelopmental outcomes of neonates with medically and surgically treated necrotizing enterocolitis. Arch Dis Child Fetal Neonatal. doi:10.1136/adc.2006.099929
  • Stephenson T, Marlow N, Watkin S, Grant J. (2000). Pocket Neonatology. p 315. Elsevier Ltd. ISBN:0443049920
  • NHS Choices (2015). Laparotomy. [online] Available at http://www.nhs.uk/Conditions/Laparoscopy/Pages/Introduction.aspx [Accessed 17 February 2017]
  • NHS Choices (2015). General anaesthesia. [online] Available at http://www.nhs.uk/conditions/Anaesthetic-general/Pages/Definition.aspx [Accessed 5 January 2017]
  • NHS Choices (2016). Small bowel transplant. [online] Available at http://www.nhs.uk/Conditions/small-bowel-transplant/Pages/Introductionpage.aspx [Accessed 5 January 2017]
  • NHS Choices (2015). Colostomy. [online] Available at http://www.nhs.uk/Conditions/Colostomy/Pages/Introduction.aspx [Accessed 5 January 2017]
  • Muller MJ, Paul T, Seeliger S. (2016) Necrotizing enterocolitis in premature infants and newborns. J Neonatal Perinatal Med. doi: 10.3233/NPM-16915130
  • Colaizy TT, Bartick MC, Jegier BJ, Green BD, Reinhold AG et al. (2016) Impact of Optimized Breastfeeding on the Costs of Necrotizing Enterocolitis in Extremely Low Birthweight Infants. J Pediatr. 175:100-105.e2. doi: 10.1016/j.jpeds.2016.03.040.
  • Battersby C, MRCPCH, Longford N, Mandalia S, Costeloe K et al.(2016). Incidence and enteral feed antecedents of severe neonatal necrotising enterocolitis across neonatal networks in England, 2012–13: a whole-population surveillance study. Lancet Gastroenterol Hepatol. doi: 10.1016/S2468-1253(16)30117-0.
  • Lin PW, Stoll BJ. (2006) Necrotising enterocolitis. The Lancet (Seminar) Vol 368.
  • Aguayo P, Fraser JD, Sharp S, St Peter SD, Ostile DJ. (2009).Stomal complications in the newborn with necrotizing enterocolitis. J Surg Res. 2009. 157(2):275-8. doi: 10.1016/j.jss.2009.06.005.
  • Gephart SM, McGrath JM, Effken JA, Halpern MD. (2012). Necrotizing Enterocolitis Risk: State of the Science. Adv Neonatal Care. Published in final edited form as: Adv Neonatal Care. 12(2): 77–89. doi:  10.1097/ANC.0b013e31824cee94




Necrotising enterocolitis: A guide for parents

First published: September 2011

Last reviewed: March 2017

Next review due: March 2020

© Bliss – for babies born premature or sick

No part of this information may be reproduced without prior permission from Bliss.

 

If you require a plain-text version of this information, please email Bliss at hello@bliss.org.uk

If you require this information in another language, please contact the Bliss helpline and request use of Language Line.

 

 
Written, edited and researched by:

Rachel Jarmy, Senior Information and Content Officer

Gemma Ellis, Senior Communications Officer

Mehali Patel, Research Engagement Officer

 

Acknowledgements:

Bliss would like to thank the following contributors for their review of this information:

Healthcare professionals

Jonathan Cusack, Consultant Neonatologist and Head of Service, Leicester Neonatal Service

Richard Hearn, Consultant Neonatologist, Newcastle Upon Tyne Hospitals Trust

Cassie Lawn, Consultant Neonatologist, BSUH NHS Trust

Cathy Garland, Consultant Neonatologist, TMBU, RSCH, Brighton

 

Public

Samantha Wallace

Jenny Bragg

Liz Hillier

Sarah Ramsden

 

Bliss would like to acknowledge a further fourteen members of the public who provided initial comments.

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