Families who are helping vital research into premature babies

Being born too soon or too small can have a major impact on a child – and not just in their early years.

About 15 million babies around the world are born less than 37 weeks into pregnancy each year. Preterm birth is a leading cause of death among newborn babies – but also of learning problems, which prevent children reaching their full potential and can affect them through their adult life too.

Researchers from the Jennifer Brown Research Laboratory at the University of Edinburgh in Scotland are examining the effect preterm birth has on the brain – and how they can improve the future outcome of preterm infants. 

The team at the laboratory – set up at the University of Edinburgh by Theirworld in 2004 – is also looking into why some of these babies grow and develop well, while others experience difficulties. 

One way they are doing this is through the Theirworld Edinburgh Birth Cohort – a 25-year study monitoring the progress of 400 premature babies to adulthood, to find new ways to prevent and treat brain injury in premature babies.

To mark World Prematurity Day on November 17, Professor James Boardman – Scientific Director of the Jennifer Brown Research Laboratory – spoke to Their News about the families taking part and about a cause for celebration earlier this year.

The birth cohort marked the occasion of the 100th baby to have a brain scan using a state-of-the-art MRI scanner.

Staff, parents, babies and children got together to “party and rejoice” in the life-changing work of the cohort. The older children even designed “welcome to the world” cards for new arrivals. 

The party was the research team’s way of thanking families who make the vital research possible through “their commitment and for sharing their precious time with us”. 

Professor Boardman said: “We wanted to thank the families for helping us in our research and want to reassure them that the data they provide for us is being put to good use.

“The information we are gathering is being published in journals, as this new research produces vital scientific insights that help improve the quality of life of children (and their parents) after their baby has been born premature. We want to help the infants meet their potential.

“The party was just a way of us giving back to the families who give their time and share their babies with us for this vital research, so it was great to see lots of families joining us this year.”

The event saw lots of different activities set up for the children and parents who are part of the Theirworld Edinburgh Birth Cohort.

Professor Boardman said: “There was a great sensory play session for the babies and age-appropriate activities for the older children. They got involved in crafts like making lava lamps and designing birthday cards.

“The children came up with some beautiful designs, which we have turned into birthday cards that will be given to the babies and young children in the study.”

Professor Boardman explained how grateful his team are to the families who let them scan their babies and thanked them for “their help and cooperation”. 

He added: “We wouldn’t have the information we now have without them. They give their time generously to help save and improve the lives of babies in the future.”

More than 350 families have signed up to take part in studies funded by Theirworld, including the Theirworld Edinburgh Birth Cohort. One study is looking into the effect of preterm birth on susceptibility to stress. 

Researcher Dr David Stoye is examining whether preterm birth alters a person’s susceptibility to becoming stressed and whether this is shaped by their mother’s propensity to stress.

He said: “The perinatal period is fascinating because of its importance in setting an individual up for later life.  

“This is especially true for those infants who are most vulnerable, including those born preterm, where the environment and early medical intervention can greatly influence future health and brain development.   

“Why relatively small changes in the newborn environment should impact later health is rarely obvious. 

“I therefore believe careful longitudinal research, such as that carried out within the Theirworld Edinburgh Birth Cohort, is incredibly important in connecting the dots and guiding medical management in the future.”

Professor Boardman said: “We know that events in early life, including during foetal life, can determine long-term health problems including propensity to anxiety, mental health difficulties and cardiovascular diseases such as high blood pressure. 

“These problems can be driven by alterations to the body’s ‘stress axis’, which controls how we respond physically to stressful events and can lead to hormonal imbalances. 

“Dr Stoye will investigate the mechanisms that link early birth with alterations to the stress axis. 

“It’s critical to understand the mechanisms that determine a person’s propensity or resilience to stress so that we can work out strategies to help prevent diseases that are caused by a heightened stress response that is ‘set’ in the newborn period.”