Early intervention in action: Aidan’s story and the research shaping cerebral palsy care
Early intervention in action: Aidan’s story and the research shaping cerebral palsy care
When Aidan was born in August 2025, his parents Niamh and John faced enormous uncertainty about what the future might hold.
Late in Niamh’s pregnancy, an antenatal scan identified excessive fluid on Aidan’s brain. He was born safely by Caesarean section three days later. Further assessments were carried out after birth, including an MRI in the neonatal unit, and his parents were given the difficult news that there was significant damage to both sides of his brain.
The initial prognosis was uncertain. Over the months that followed, Aidan was closely monitored and his family threw themselves into supporting his development. He received support through Enable Ireland, while Niamh also took him swimming regularly and sought out additional therapies, including physiotherapy.
At around six months old, a specialist assessment gave his family a clearer understanding of his development. He had significant movement difficulties and was diagnosed with cerebral palsy (CP).
Aidan was already receiving considerable support, but his family continued to look for opportunities to support his development during this important early stage.
One of those opportunities came through research.
Exploring early intervention through research
Following his diagnosis, Aidan was eligible to take part in APPLESTele, a cerebral palsy-focused intervention study led by Emory University and funded in the United States by the National Institutes of Health (NIH). The Irish arm of APPLESTele is being delivered through INFANT Research Centre at University College Cork as part of the ELEVATE programme.
The study is a six-week, home-based early intervention programme for babies with cerebral palsy or at high risk of cerebral palsy. Delivered through telehealth, the programme supports parents to use simple, play-based exercises at home to encourage movement and use of their baby’s weaker arm.
For Niamh and Aidan, that meant incorporating structured activities into everyday life at home, with a particular focus on encouraging Aidan to engage his left arm and hand.
The programme wasn’t always easy. Some weeks were more successful than others, particularly when Aidan was teething. But as it progressed, Niamh began noticing changes in the way he was using his left side.
“He was lifting his arm up really high… he was starting to wiggle his fingers in the beans and the sand and knock over the toy. So that was massive.”
She began noticing changes outside the structured sessions too. Aidan would hold objects in his left hand for longer and use it to help hold his bottle.
Around this period, he also began rolling before his first birthday. While rolling was not an outcome measured as part of APPLESTele, and Aidan was receiving other therapies and support at the same time, it was a hugely significant milestone for his family.
“We never thought he’d be rolling before his first birthday,” Niamh says. “It was like Christmas Day.”
Today, at 13 months old, Niamh describes a little boy doing far more than his family had initially been led to expect.
“He’s babbling, he’s saying Dada… he’s waving and he’s giving kisses and he’s clapping hands. He’s doing far more than any of us anticipated.”
She continues to see changes in how Aidan uses his left side too. When he rolls, he is increasingly able to recognise where his left arm is and reposition it himself. When she asks him to lift the arm, he can.
“Those are all just massive wins. We never take it for granted.”
From research into practice
For Niamh, completing APPLESTele has also raised an important question: what happens when the research ends?
She has looked for ways to continue this type of intervention but says she has struggled to find comparable therapy available in Ireland.
That question goes beyond one family. Studies such as APPLESTele are helping to build our understanding of how early, targeted intervention can support babies with cerebral palsy. The next challenge is ensuring that approaches supported by evidence can move beyond research studies and, where appropriate, become part of the care available to children and families.
Professor Deirdre Murray, Deputy Director of INFANT Research Centre at University College Cork, says the approach to cerebral palsy diagnosis has changed significantly.
“Until relatively recently, there was often a ‘wait and see’ approach for infants at high risk of cerebral palsy. We now have reliable tools that can allow us to diagnose CP much earlier, often within the first six to nine months of life.
“Research is also building our understanding of the difference that CP-specific interventions such as APPLES can make. For suitable babies, starting targeted intervention during the first year of life gives us an important opportunity to support their development as early as possible.”
For Niamh, the importance of continuing this work is much more immediate.
Aidan is now 13 months old, and his family is celebrating every new movement and every new milestone. But having experienced this type of targeted early intervention through research, Niamh would like to see opportunities like it become available to more children and families.
“I’d love to be keeping it going,” she says.
Help shape the future of cerebral palsy care
This October, INFANT is shining a light on research working to improve the early detection and intervention of cerebral palsy.
All donations made to INFANT Research Centre during October will support cerebral palsy research – helping us find better ways to identify CP earlier, support children sooner and improve care for children and families.
