As a trainee surgeon, I attended SIGNEC 2017 in London and was amazed at the diversity of the group of people in attendance – parents, nurses, neonatologists, surgeons, researchers and charity CEOs. I believe this form of multi-disciplinary approach is absolutely essential for sharing information and developing prevention and treatment strategies as it highlights the need for different perspectives. This meeting reignited my interest in finding a way forward for babies with NEC. As a consultant surgeon, I have continued to witness the heartache that NEC can cause for families.
NEC is a devastating condition that can strike relatively well premature babies very suddenly. Quite often families have never heard of this condition before their baby’s diagnosis and this adds to the shock factor when the baby suddenly becomes unwell. In NEC, a severe inflammatory process affects the intestine and as this disease process evolves it also has a major knock-on impact on the overall condition of the baby. This can result in a baby becoming critically unwell and the need for mechanical ventilation and additional blood pressure support treatment. For hospitalized babies over the age of 2 weeks, NEC is the most common cause of death.
Surgery is not curative and is used as a damage-control tool to allow the baby to recover. If the baby survives, there are long term implications involving possible further surgery as well as nutritional and neurological problems. The survival and outcomes have not changed significantly over the last five decades. However, modern technology has leapt forward dramatically in recent times and there is an opportunity to apply this new innovative thinking to create a potential solution for old problems.
The application of advanced statistical modeling within machine learning has been a game changer for oncology, cardiology, diabetes and dermatology. Applying machine learning to NEC research can be a key enabler to assist in validating diagnostic tools, and at the Royal London Children’s Hospital we have created a data-driven algorithm that will enable stratification of need for surgery for a baby with NEC early in the disease process. At its core, the algorithm is based on routine data and investigations entered into Badgernet, the electronic patient record system used by all neonatal units in the UK. We studied data over the last decade (2009-2018) captured on babies in our unit who developed NEC and found that by using the algorithm we could predict, with 72% accuracy, which babies had an increased risk of needing surgery for NEC. This algorithm will form the basis of an upcoming prospective observational trial within the London Neonatal Transfer Service , and it is hoped that in time it will be accessible via a free app. This could enable medical teams to provide families with more information about the severity of the disease process and the potential risk for surgery sooner than we can at present, and so help guide difficult decisions for parents and neonatologists.
“This algorithm will form the basis of an upcoming prospective observational trial within the London Neonatal Transfer Service.”
Having attended two SIGNEC conferences and listening to parents talking about their heartrending journeys one thing has become very apparent very quickly – families need a lot more information and they need to be made aware of the possibility of their baby developing NEC and the risks associated with transfer and surgery.
There is a real need to identify the basis and mechanism of NEC so that novel therapies can aim to eradicate the disease completely. As such, more awareness and funding needs to be directed toward this condition. However, in the interim we also need to light a pathway ahead for babies who have this devastating condition; if we must apply the damage control tool of surgery, hopefully we can operate on them earlier and improve survival and outcomes.
SIGNEC, in conjunction with The NEC Society in the USA and Pequenos Grandes Guerreiros in Brazil, hopes to raise the global profile of NEC and to facilitate more collaborative research. I would encourage all parents, friends and families, nurses and doctors to raise awareness of NEC on NEC Awareness Day, May 17th, by using the hashtags #NECDay, #ThisIsNEC and #preventNEC.
Nigel J Hall MRCPCH FRCS PhD
Associate Professor of Paediatric Surgery
University of Southampton
Consultant Paediatric and Neonatal Surgeon
Southampton Children’s Hospital