Neonatal Hypoglycaemia and Childhood Brain Injury: Ryan's Story
Ryan’s story is a powerful reminder that the effects of neonatal hypoglycaemia can extend far beyond the first days of life. Ryan was one of the children whose care informed the findings of the independent Ockenden Review into maternity services at Nottingham University Hospitals NHS Trust.
When Ryan was born, there was every reason to believe he was a healthy baby. Sarah’s pregnancy had been largely straightforward, and although he was delivered by emergency Caesarean section, his Apgar scores were perfect. Like any new parents, Sarah and her family were looking forward to taking their son home and beginning the next chapter of their lives.
Instead, within days, everything changed. What initially appeared to be a healthy start masked a serious medical emergency. Ryan developed neonatal hypoglycaemia, resulting in a childhood brain injury that would shape not only his future, but also the lives of those around him.
"As a first-time mum, I knew something was wrong,"
Sarah instinctively felt that something wasn’t right.
Ryan became increasingly sleepy, struggled to feed, developed jaundice and began making an unusual high-pitched squeal. He was also repeatedly lip-smacking ā a sign that would later be recognised as hypoglycaemic seizures.
Despite raising her concerns at Nottingham University Hospital, several hours passed before Ryan was assessed by a doctor. By that point, he had suffered prolonged hypoglycaemia, resulting in a metabolic stroke and a brain injury.
Further investigations revealed extensive and irreversible brain damage. Ryan was diagnosed with an acquired brain injury, hypoxic-ischaemic injury, optic nerve damage and cerebral palsy.
Doctors prepared Sarah and her family for the possibility that Ryan might never walk or talk.
Learning to Adapt
Instead of settling into life with their newborn son, Sarah’s family suddenly found themselves navigating hospitals, therapies and an uncertain future.
“Everything changed overnight,” she says.
Every milestone Ryan achieved became something to celebrate because many had once seemed impossible. Parenthood became centred around appointments, rehabilitation, education and advocating for Ryan to receive the support he needed.
The emotional impact was immense.
Sarah describes grieving the future she had imagined for her son while learning to embrace the wonderful little boy he was becoming.
Caring for Ryan also became a full-time responsibility, leading Sarah to leave her career so she could care for him and advocate on his behalf.
“We essentially spent years living in a fishbowl,” she explains. “Experts and doctors were constantly assessing Ryan, analysing every aspect of his development and our parenting.”
The ongoing trauma and relentless demands of caring for Ryan ultimately contributed to the breakdown of Sarah’s marriage. She now lives with complex PTSD as a result of everything the family experienced.
Defying Expectations
Despite the devastating prognosis given shortly after his birth, Ryan has achieved milestones that many believed would never be possible.
ā¢ He learned to walk.
ā¢ He learned to talk.
Although these achievements required years of therapy, determination and support, each one represented another reminder that Ryan was capable of exceeding expectations.
Over time, Sarah says her family learned that although Ryan’s future would look different, it could still be filled with love, happiness and purpose.
The Hidden Reality of Childhood Brain Injury
Today, Ryan is 18 years old.
At first glance, many people assume he is an independent young adult. However, the effects of his brain injury continue to affect every aspect of daily life.
Although Ryan can physically wash and dress himself, he requires prompting for almost every task and is entitled to two-to-one support around the clock.
His brain injury affects his understanding of social situations, relationships, money and risk. He has very little awareness of danger and is particularly vulnerable to exploitation.
These are challenges that are often invisible to others.
Because Ryan can walk and talk, people frequently underestimate the level of support he requires.
Sarah hopes that sharing their experience helps others understand that childhood brain injury is often a hidden disability with lifelong consequences.
Families facing similar challenges do not have to navigate this journey alone. At Brain Injury Group, we understand the lifelong impact that childhood brain injuries can have on both the individual and those around them.
We help families access the guidance, expertise and resources they need at every stage of their journey. Whether you’re seeking information, practical support or specialist advice, we’re here to help.
The Importance of Listening to Parents
Ryan’s story highlights that supporting families goes beyond simply listening when parents raise concerns. It is about recognising their experiences, learning from them and using those lessons to raise greater awareness of childhood brain injury, helping improve understanding and outcomes for future families.
Emma Trudgill, Brain Injury Groupās Midwife and Clinical Advisor for Children, believes Sarah’s experience reinforces a vital lesson for healthcare professionals.
“Reading Sarah’s account of her journey with Ryan is both heartbreaking and a stark reminder of a truth we must take note of in postnatal care. Parents are the true experts on their babies.
The symptoms Sarah so accurately identified are not typical newborn behaviours ā they are warning signs to stop, to escalate and to look closer. Not in eight hours’ time, but as an ongoing process from the moment that parent highlights a concern with their baby. Delays in this process are a failure of our most basic safety net to protect babies.ā
I am incredibly sorry that Ryan and his family were let down when they needed it most. Sarah’s brave account reiterates the vital learning of listening to parental instinct as a clinical indicator in its own right.”
Learning From the Ockenden Review
Ryan’s story also reflects the findings of the independent Ockenden Review into maternity services at Nottingham University Hospitals NHS Trust. Published in 2025, the review highlighted significant failings in maternity and neonatal care and made clear that parents’ concerns must be recognised, listened to and acted upon promptly.
Among its recommendations, the review emphasised the importance of responding to signs that a baby may be deteriorating, improving communication with families and ensuring healthcare professionals learn from families’ experiences to help prevent future harm.
While Ryan’s experience took place many years before the publication of the review, Sarah hopes that by sharing her family’s journey she can contribute to that ongoing learning, helping to raise awareness of neonatal hypoglycaemia and reinforcing the importance of listening to parental instinct.
Looking to the Future
Alongside managing Ryan’s complex needs, Sarah pursued a legal claim against Nottingham University Hospitals. Liability was admitted when Ryan was eight years old, and the case settled three years later.
While the settlement has helped secure Ryan’s future care and support, Sarah says āno amount of compensation can undo what happened.ā
Instead, she has dedicated herself to raising awareness of neonatal hypoglycaemia, working alongside Nottingham University Hospitals to improve learning, and supporting other parents raising children with acquired brain injuries.
She has also found comfort in connecting with families who truly understand the realities of life after childhood brain injury.
As Ryan transitions to adulthood, Sarah’s hopes remain simple.
She wants him to live a happy, fulfilling and meaningful life, with opportunities to develop friendships, enjoy activities he loves and remain safe within a supportive environment.
More than anything, she hopes people understand that brain injury affects far more than the individual. It changes the lives of entire families.
“I hope that by sharing Ryan’s story, people will better understand that childhood brain injury is lifelong,” Sarah says.
āIt doesn’t end when a child leaves hospital. Families continue living with its consequences every single day.”
How Brain Injury Group Can Help
Brain Injury Group supports individuals and families affected by brain injury by providing information, guidance, and access to our network of professionals across the UK.
If your family has been affected by a childhood brain injury, and you would like guidance or information about the support available, we are here to help.
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