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The lifelong effects of premature birth and my journey to find the answers

The way ahead for children born preterm is to identify their future needs as early as possible.

Professor Dieter Wolke, Department of Psychology, Warwick

Each year, 15 million children are born prematurely worldwide. Premature birth is the main cause of child mortality, whilst children born before 37 weeks of pregnancy are the fastest growing group of children with special needs.

For too long, the interest of many neonatologists has been focused on the short term, and how a premature birth affects an infant in the first two years of their life. However, there has been little focus on those unanswered questions, which most play on the minds of parents.

We wanted to understand how do children born prematurely get on at school? Will they get a job, find a partner, and enjoy friendships? Ultimately, will they be mentally and physically healthy, and – most importantly – happy?

Our study remains one of the largest preterm follow-up studies in the world. In assessing language development, brain function and general cognitive development, our research found that early identification of children with cognitive problems is important in order to inform care and schooling.

Historically, clinics and institutions have been primarily concerned with the medical element of a premature birth and the first two years of life. Yet, the development phase between birth and adulthood remains equally important and provides opportunities to change the developmental course.

Evidence suggests that babies born Very Preterm are twice as likely to be bullied, more often have lower school qualifications, and are less likely to have a partner – all of which underpins poorer mental health outcomes.

It costs around £250,000 to ensure the survival of a Very Preterm baby, but why should investment stop when they leave the hospital? Successful transition and integration to school, for example, can be just as important to overall life chances.

In 1990, following work at the Hospital for Sick Children in London, I raised 13.5 million Deutschmark to research babies born prematurely and sick, in South Bavaria. The study was intended to be longitudinal, and researched all developmental factors, such as a child’s family, their parents and siblings, peer relationships and opportunities at school.

Today, our study remains one of the largest preterm follow-up studies in the world. In assessing language development, brain function and general cognitive development, our research found that early identification of children with cognitive problems is important in order to inform care and schooling.

Through an interdisciplinary approach, and with help from colleagues at other institutions, we have created a comprehensive screening questionnaire – the Parent Report of Children’s Abilities-Revised (PARCA-R). It identifies cognitive and language deficits at the age of 2 in preterm children, and informs the best follow-up approach for each individual case.

It is used by healthcare and education professionals globally, is available in 14 languages, and became the conventional follow-up tool when face-to-face assessment was not possible during the COVID-19 pandemic.

As a result of our findings, the Department for Education requires authorities to consider the age group a prenatal child would fall into if born on time, when beginning school. Subsequently, each year 6,500 parents in England and Wales request postponed school entry because of preterm birth. Our research is having a real-world impact on families across the UK.

Carrying out a longitudinal study spanning over 35 years requires commitment, compromise, and sustained funding to deliver research with impact, that improves lives. Whilst science remains a global endeavour without borders, the practical application of research can be beset by local challenges, from bureaucracy to cultural differences. We need more longitudinal studies to be funded to investigate outcomes caused by an individual’s social environment.

The University of Warwick attempts to reduce barriers of micro-management and bureaucracy other clinics and institutions may face, to promote academic freedom and thinking outside of the box. In doing so, we can signal the way ahead for a more impactful approach to one of the world’s greatest problems.

Trust is critical to better research outcomes, and we must trust our teams to search for the answers to these big questions – with bold, ambitious projects. For example, we have recently secured funding to seek further insights into aging from pre-term births. Our dynamic, cross-faculty and international approach unites colleagues and draws on a variety of expertise to achieve more, together.

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