Through this journey, we have found that there is a great deal of unknown from being told by consultants that they can’t “guarantee any child will walk” to “it’s likely he will have lower intelligence than his peers”. Rupert has shown no indication of his encephalopathy, which we are very thankful for given the shocking news delivered to us when he was born. One of the most difficult things for us as a family is that we don’t know what the future holds for Rupert and the experts can only give us the worst-case scenario. As a family, we feel that the research into babies born with HIE who show no sign of their diagnosis after cooling is limited particularly after 2 years of age. Children who meet all their developmental milestones appropriately are discharged from services, does the research stop there? It would be good to see research into how these children develop into adolescence and beyond. I believe a study into this would be helpful for those who have been told to expect the worst and left to wait for the ball to drop. The research would be simple to complete and involve tracing when those with HIE at birth access services that may be related to encephalopathy. With particular areas in mobility such as physiotherapy and any referrals to children’s special educational needs or mental health services.

With that being said, any research into this area is much appreciated; as a family, we are immeasurably thankful to those who have and continue to research neonatal encephalopathy. I am a district nurse and so have some understanding of the complexities of research in healthcare, we are grateful for the work researchers have put into improving neonatal outcomes. Our son has gone from a poorly baby who doctors expected not to survive the ambulance journey from one hospital to another to a 2-year-old who is able to walk, run, show empathy, talk in sentences and most importantly is very happy. We look forward to hearing about any further research into neonatal encephalopathy and improvements in outcomes for the babies and families affected.

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