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Professor Caroline Hartley, Principal Investigator, and Dr Marianne van der Vaart, Postdoctoral Researcher, in the Paediatric Neuroimaging Group at the Department of Paediatrics, have today launched a series of animations aimed at improving parental understanding of brain development in premature infants, and the effect it has on breathing and apnoeas (the cessation of breathing).

The series, called My Baby’s Brain, has been developed to support parents of premature babies, enabling them to understand why premature babies have apnoeas, the treatment they receive, and the equipment that is used.

My Baby’s Brain is a free, online resource that was created in collaboration with parents of premature babies alongside SSNAP (Supporting sick newborns and their parents), a charity based in the Newborn Care Unit at the John Radcliffe Hospital in Oxford.

Lauren Young, mother to Georgie, (age 7 and born at 40 weeks) and to Rosie (age 3 and born at 24 weeks), and also part of the Family Care Team at SSNAP, was part of the parent group that led to the creation of the series. She had a “traumatic, exhausting and long hospital stay of nearly 6 months” following the birth of her youngest daughter, and proactively wanted to help neonatal research and development.

She said: “In my role with the Family Care Team for SSNAP I see so many parents trying to navigate all the information they receive from the medical teams. I feel strongly that anything helping parents to process the information, feel more comfortable with their surroundings and the care that their child is receiving, can go a really long way to helping them on the journey.”

“These animations will be so helpful to parents and families with premature babies. They will help them to understand the reasons their baby is needing the care they receive and give a very clear picture of equipment used, as well as a soft introduction to language and terminology they may hear along their journey. My Baby’s Brain will help parents feel more in touch with their babies’ care and help them to build confidence in the neonatal setting.”

Professor Hartley said: “In the UK, 1 in 13 babies is born prematurely. Apnoea of prematurity is a common problem in neonatal care, affecting around 50 percent of premature infants. Apnoeas are well-managed by the clinical team but can be worrying for parents. These animations have been put together with parents in mind, to give parents of premature babies a better understanding of how their baby’s brain is developing, how apnoea is linked to the immaturity of a premature infant’s brain, and the techniques researchers use to investigate brain development. Working together so closely with SSNAP and parents on this project has been extremely rewarding and enjoyable and has greatly enriched the animations which we hope will be a valuable resource for parents.”

Martin Realey, Charity Lead for SSNAP, said: “We are delighted to be able to support the creation of My Baby’s Brain which will be an indispensable tool to all parents to premature infants on neonatal units here in the John Radcliffe Hospital, and across the country. They have been made with parents in mind to ensure the information is accessible and easy-to-understand. The videos can be accessed using QR codes making them available on mobile devices, allowing parents to choose a time that best suits them to watch and process the information: This could be cotside with their baby, in the quiet of their home, or even sharing them with other family members. Viewers are also able to choose from bite-sized clips or longer videos which helps manage what can be an exhausting time of processing so much new information.”

My Baby’s Brain was funded by the Wellcome Trust Enriching Engagement programme, an initiative created to support researchers’ public engagement outreach. This series is the public engagement activity of Professor Hartley’s core research project into the relationship between apnoeas and brain development in premature infants.

Professor Hartley is a Sir Henry Dale Fellow at the Department of Paediatrics. 

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