One in three babies admitted to a neonatal intensive care unit will fail their school readiness assessment at age five, with consequences lasting into adulthood. A new project aims to identify those babies at greatest risk and give them a helping hand to fulfil their potential.
Every year in the UK, around 600,000 babies are born. For most parents, this is a time of joy and celebration, a welcoming into the family of a beautiful new member. For some families, however, it can also be a very stressful time.
Around one in 10 babies is transferred to a neonatal intensive care unit (NICU) when they are born as they require specialist care. It might be because they have been born prematurely before their organs have fully developed, or because of low birth weight or breathing difficulties, or they need surgery, for example.
Fortunately, because of the high standard of care in NHS hospitals, in most cases the babies will survive, and their parents can look forward to introducing their baby to his or her new home. However, for many of these children, something about their unsteady start to life will have a long-term impact.
A difficult start
At age five, children in reception at UK state schools will have undergone a school readiness assessment to see if they are ready for the transition to formal education. This looks at such things as how well the child can communicate, at their behaviour and social interactions, physical skills (for example, tying shoes), cognitive skills and ability to follow instructions. While one in six children will fail this assessment across the UK, Cambridge research indicates that children who had been admitted to NICU are twice as likely to do so.
“Not every child with a tricky start has a problem later on,” says Professor Catherine Aiken from the Department of Obstetrics and Gynaecology at the University of Cambridge. “Some of them thrive and go on to do brilliantly well at school. But we know that they've got a higher chance than most children of needing extra support.”
Aiken is Chief Investigator of the new Babies’ Longitudinal Outcomes, Omics and Milestones Study (BLOOMS). Funded by a £4 million award from Wellcome, it aims to recruit 1,000 babies admitted to NICUs across three NHS hospitals in the East of England – the Rosie Hospital in Cambridge, Luton and Dunstable University Hospital, and Norfolk and Norwich University Hospital – to try and understand which babies will need most support in their early life and what that support might look like. In addition, the team aims to include not only children in the East of England, but also across the UK using national records for neonates and their educational outcomes.
“If we could better identify which children are going to need help to meet their potential earlier on,” explains Aiken, “then there are support interventions that can be put in place when they are very young to get them to a place where they're ready to learn by the time they go to school.”
The study is very much in line with the overarching prevention medicine research strategy of the Cambridge Children's Hospital.
David Rowitch, Professor of Paediatrics at the University of Cambridge
David Rowitch is also Deputy Director of Research at Cedars-Sinai Guerin Children’s in Los Angeles and is Principal Investigator of BLOOMS. He says that there is an optimal window in which to intervene, with learning interventions less effective in older children.
Waiting until age five to find out about a problem is not ideal because it’s possible you've missed this window,” he says. “The premise of our study is that we can identify babies in NICU during an actionable time frame.
David Rowitch, Professor of Paediatrics at the University of Cambridge
“We want to be able to say ‘There’s a red flag. Here's a child who should be admitted into an interventional support programme.’ If we use techniques such as genomics, we can go beyond the clinical record alone to be even more specific about this assessment, targeting help to those most likely to benefit.”
This is important, he says, because children who fail their school readiness assessments are more likely to experience problems in their adult life: to have poorer physical and mental health; to be incarcerated; to be deprived; even to die early.
“[School readiness] is one of the most important outcomes that we can focus on because it packs so much in about a child’s later trajectory across the life course,” Rowitch says.
A new vision for children’s health
Work will begin shortly on the new Cambridge Children's Hospital on the Cambridge Biomedical Campus. It’s a visionary hospital, looking to identify the origins of physical and mental health conditions, and treating these as two sides of the same coin.
Rowitch has been the academic lead for the project and driving force behind the Cambridge Children’s Research Institute (CCRI), which will sit at its core.
Although BLOOMS will begin recruiting children in 2026, several years before the new hospital is open, it will be one of the CCRI’s flagship programmes.
“One of the ‘big questions’ in medicine is: what are the origins of physical and mental health conditions?” says Rowitch. “The answer to that question would tell us when we should screen, because potential interventions may be more effective at an early phase of the process. We might even prevent some diseases altogether.”
In the larger picture, this is what BLOOMS is trying to do, he says: to start with an outcome – in this case, failing the school readiness assessment – and try to establish what led to it, then to mitigate or prevent this adverse outcome.
World-leading expertise
BLOOMS brings together expertise from across Cambridge and beyond: Professor Pasco Fearon, Director of the Centre for Child, Adolescent and Family Research at the University of Cambridge, is a developmental and clinical psychologist; Professor Sam Bejhati will bring the genomics excellence of the Wellcome Sanger Institute; and Dr Neerja Karnani from the Agency for Science, Technology and Research (A*STAR), Singapore, will provide access to a cohort made up of children from largely Indian, Malay and Chinese ethnicities in a country with a similar national educational assessment to that in the UK. On top of this, Cedars-Sinai Guerin Children's in Los Angeles – where Rowitch is now based – will bring expert knowledge of the proteome, a way to comprehensively survey all proteins in the blood.
The team will look at everything from blood samples to stool samples, to genetic data, searching for ‘biomarkers’ – biological signatures – that might be used to identify those children at greatest risk and in need of educational support. They aim to follow the children to the end of compulsory education at 16 years old, tracking their physical and mental healthcare and educational outcomes.
“We want to be able to pinpoint early on who's going to need ongoing support,” says Aiken.
The UK Department for Education has taken an interest in the team’s work, providing funding through UK Research and Innovation to explore what an intervention pathway might look like. Many of these interventions may already be available – from Sure Start programmes to psychological support to enhanced support for parents. But, says Aiken, the problem is matching those interventions to the children who need them.
“There's lots that can be done if we know which children will need the extra support,” she says, “but if we don't know who they are, then we're just waiting for problems to happen. [BLOOMS will allow] a proactive approach to make sure that every child has the opportunity to fulfil their potential and to be as ready to learn as they can.”
Listening to parents
While the intention of BLOOMS is to understand how to identify and support children who would benefit and give them the best opportunity in life, there are risks if we do not get the messaging right, says Rowitch.
These are terribly important issues for families. No parent wants to hear that their child may face challenges in education and later life, but we hope that explaining that BLOOMS is helping design interventions to support children like theirs will give them hope and encourage them to participate in the research.
Professor David Rowitch
For this reason, the team is involving families from a variety of backgrounds and communities across the East of England in discussions about the purpose of the research, the questions they ought to be asking, and how best to communicate with parents in NICU at what is for them a very challenging and stressful time.
“Communicating effectively to parents is a central goal of what we're doing,” says Aiken.
Making a difference
Rowitch says he is surprised that school readiness has not been looked at before as an outcome.
“Even though there are 70,000 children admitted to NICU each year in the UK, we don't know how they do in school because linking to school readiness has not been carried out. BLOOMS might help to change the way we follow children who have been in NICU.”
He believes that in future, researchers will start to use this outcome routinely in their work. The UK is an ideal place to make this happen, with arguably the largest national system for assessing children’s development in the world. But the project is also being met with widespread enthusiasm in Singapore, Canada and the United States, and it is possible that further BLOOMS sites will be added as part of an international consortium.
It’s a really exciting project to be involved with, says Aiken, and she is looking forward to beginning recruitment in the new year.
“It's got huge scope to make a big difference for children early in their lives and to improve their chances across their whole life course. It could be a really impactful piece of research.”
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