We asked NEC UK families what questions they wanted answered by our medical advisory panel. we are extremely grateful to our MAP Members who have answered them below:
Dr Nicholas Embleton
Consultant Neonatal Paediatrician and Professor of Neonatal Medicine Read More...
Dr Janet Berrington
Consultant Neonatal Paediatrician in Newcastle and Honorary Clinical Senior Lecturer in Neonatal Medicine, Newcastle University, UK.
Dr Christopher Stewart
Has researched the early life microbiome in health and disease for the past decade, specializing on infants born premature (<32 weeks gestation). Read More...
Jutta Koeglmeier is a paediatric Gastroenterologist at Great Ormond Street Hospital for Children in London, where she is clinical lead for the Unit of Nutrition and Intestinal Failure Rehabilitation.
Nigel Hall is a Paediatric Surgeon in Southampton and a researcher at the University of Southampton
1.How can we spot the signs quicker? I understand there are many and they are very hard to spot but is there a specific sign to look for?
Nick Embleton: Unfortunately, there are no specific signs that are always associated with NEC. In many cases the early signs are incredibly difficult to spot. Looking back, people will often comment that they thought ‘things were not right’ but at the time it was difficult. I have worked as a consultant for more than 20 years, and have probably looked after hundreds of babies with NEC - I still find it difficult to know for sure which babies have NEC, especially in the early stages. However, there is some good news - research studies are starting to use new techniques that can look at the patterns of chemicals or other markers in the stool (poo). This might provide an early warning signal. It is also possible that newer techniques of scanning the baby’s tummy or looking at changes in blood flow may help. But sadly, at present, it is still really difficult to spot the early signs in many babies.
2.Are there tests in early stages if a parent suspects their child may have NEC but their symptoms are similar to other conditions. Eg my son was on suppositories for 3 days for having no bowel movements, was being fussy with feeds, he had a bloated belly which was all veiny, he was having problems with blood sugars and they put it down to constipation and being new to feeds. 8 hours later he was ventilated, we were told he had NEC and just hours later he passed away. For 3 days I raised my concerns for staff to brush it off
Nigel Hall: An X-ray of the abdomen is usually the first test that is done to see if there is any evidence of NEC. If the X-ray doesn't show this but there are still concerns that a baby may have NEC, then an ultrasound of the baby’s tummy can also be helpful. Not all units have the appropriate expertise to use ultrasound for a baby who may have NEC. Unfortunately we do not have a single test that can tell for certain if a baby has NEC or not. The diagnosis is made on the combination of clinical features (the baby’s observations and examination findings), blood test results and the X-ray or ultrasound findings. Increasing awareness of NEC (such as through NEC-UK) is certainly something that may help with earlier identification.
3.Is there guidance on feeding premature infants. For example, how often should their feeds be increased? How many hours should be between feeds, how many mls should feeds be increased by?
Why does this vary so much between professionals.
Nick Embleton: Doctors have often worried about when to start milk feeds, how quickly to increase the volume and whether there should be long gaps (3 hours) between feeds, short gaps (1 hour) or continuous. This is a really complicated area of research, but UK researchers have contributed to one of the largest ever trials in this area (SIFT) of more than 2,800 preterm babies (by the way, thank you to all the parents who took part !). What this study shows quite convincingly is that for most preterm babies it really does not matter how quickly you increase feeds within a certain range - so faster increases at 30ml/kg/day versus slower increases of 18ml/kg had no effect on whether babies got NEC. Of course it is possible that feed increases much quicker than that could be a problem, but most doctors are happy that anything in the range 18-30ml/kg seems safe.
We still do not know when is the best time to start milk feeds, but most of us are confident that it is safe to provide small amounts of colostrum in the first hours of life. We need more studies to be absolutely sure if early colostrum really makes a positive difference, but we are not worried that it is dangerous or increases the risk of NEC. However, early feeds of formula milk may behave differently so our own practice is only to use mother’s milk in the first 2-3 days.
There have been a few studies of bolus versus continuous feeds. None of those have been large enough to conclusively determine an effect on NEC, however, there are no data to suggest that the risk of NEC is affected by bolus or continuous. Different hospitals practice in different ways, and do what seems to work for them. We understand that it can be difficult for parents when every NICU does something different. But this might be a good thing! It means everyone is still thinking rather than blindly following a single way of doing things, which might not always be the best!
4. Is there a guideline for surgery or extreme cases of NEC (my son was refused transfer to another hospital until he perforated his bowel?)
Nigel Hall: the decision of which babies will benefit from an operation and the timing of surgery is often difficult and we know there is variation between different units and different surgeons regarding this. This area is certainly the subject of ongoing research as earlier surgery has the possibility of improving outcomes from NEC.
As such no written guidelines exist. If a baby has a perforation in their intestine from NEC then that is generally accepted as an indication for surgery. If there is no perforation then the decision is usually made based on the general clinical condition of the baby.
Because not all neonatal units have neonatal surgeons on site the decision to transfer a baby to a surgical unit can sometimes be difficult. Surgeons rely on the discretion of the team at the referring hospital to help them decide which babies need transfer to be seen by a surgeon.
5.What is being done to help prevent cases of NEC in premature infants?