In the final episode of Breaking the Taboo Series 5, I sat down with Dr Sam Amin and Emma Rush from Irwin Mitchell to talk about baby brain injury, what it can mean for children and families, and where parents can turn for support.
When a baby suffers a brain injury, one of the hardest things for parents can be not knowing what the future will look like. What does a brain injury actually mean? What is HIE? What signs should parents look out for? And what support is available if difficulties emerge months or even years later?
The conversation covered everything from the medical terminology parents may hear in hospital to the emotional, financial and practical impact on the wider family.
Here are five things I learnt:
1. Understand what a brain injury actually means
The term “brain injury” can sound frightening, but it covers a very wide range of conditions and outcomes. As Dr Sam Amin explained, brain injury means that the brain has been affected in some way, with the potential to interfere with how it functions or develops.
There are many possible causes, including a lack of oxygen, infection, inflammation and trauma. Brain injury can happen at any stage of life, but injuries during the first few years can be particularly significant because the brain is constantly developing and making new connections.
One term parents may hear is hypoxia, which simply means a lack of oxygen. Another is HIE – hypoxic ischaemic encephalopathy.
As Sam explained, hypoxia refers to a lack of oxygen, while ischaemia refers to a lack of blood supply. When the brain experiences both, this can lead to hypoxic ischaemic encephalopathy. Understanding these terms can make an incredibly confusing and frightening situation feel a little more manageable.
But perhaps the most important thing to understand is that every child is different. There is a very wide spectrum of outcomes following brain injury. Some children may experience significant physical, cognitive or behavioural difficulties, while others may be mildly affected or have no lasting difficulties.
2. Difficulties may not always be immediately obvious
One of the most important points to come out of our conversation was that the effects of a brain injury are not necessarily visible straight away. Some children may initially appear to be developing normally, only for difficulties to become clearer as they get older.
Emma shared the story of a little girl she represented who had experienced a lack of oxygen during delivery. In her early years, she had some physical difficulties, including speech and fine motor problems, but was otherwise developing relatively well. It was not until she reached secondary school that more significant cognitive difficulties became apparent. She had been masking her difficulties and trying to keep up with other pupils, including copying their work, which unfortunately meant teachers sometimes misunderstood what was happening.
This is why monitoring development over time is so important. A child may experience difficulties with movement and motor skills, but brain injury can also affect communication, learning, behaviour, coordination, vision, hearing and other functions. Which difficulties emerge depends on the cause and the area of the brain affected.
And importantly, development does not always follow a predictable path.
3. It can be very difficult to predict the future
For parents, one of the biggest questions after a baby suffers a brain injury is understandably: what will happen to my child? But as Sam explained, it is very difficult to make a reliable prediction, particularly because babies’ brains continue to grow and develop through different stages.
Doctors can look at the whole picture, including MRI scans, EEG recordings, physical examinations and developmental milestones, to help understand whether a child may experience difficulties and what those difficulties might be. But there is still uncertainty. That uncertainty can be incredibly difficult for families to live with.
Sam also stressed the importance of early intervention. Monitoring children carefully means that if concerns emerge, support can be put in place as early as possible. That might include monitoring for seizures, keeping track of developmental milestones or accessing specialist support where necessary. For parents, this means not feeling that they have to wait until a problem becomes severe before asking for help.
If you are concerned about your child’s development, raising that concern is important - even if you are not sure whether it is significant.
4. Brain injury affects the whole family
A baby’s brain injury does not just affect the child. It can affect parents, siblings and the entire family’s emotional, financial and practical circumstances.
Emma shared the example of a family she had represented where both parents were needed to provide the care their daughter required. Neither was initially able to work, leaving the family reliant on statutory services. Their other child was also affected because the parents felt they were having to devote so much of their attention to their daughter. In that case, additional support was eventually put in place, including private care, which helped lessen the burden on the family. It meant one parent could return to work, while the other could spend more time with their other child.
As Emma said, the wider impact on families cannot be underestimated.
Sam made the same point, explaining that the effects on parents and siblings can be psychological, physical and financial, including impacts on employment and family life.
When we talk about supporting children with brain injuries, we therefore also need to think about supporting the people caring for them.
5. Don’t be afraid to ask for help
Perhaps the most practical message from the episode was a simple one. If you are worried about your child, speak up. Sam explained that babies who have suffered brain injury will often have follow-up appointments and developmental assessments. But if a family does not have access to those services, parents should still raise concerns with their health visitor or GP.
Things parents may notice include concerns about motor development, fine motor skills, vision, interaction, speech and language development, or bladder and bowel control. And you do not need to feel embarrassed about asking.
Sam was particularly clear that parents should not feel guilty about raising concerns, even if it turns out that those concerns are not medically significant.
Early support can make a difference. Depending on a child’s needs and where they live, support may involve community paediatrics, neurodisability services, paediatric neurology, psychology or neuropsychiatry.
With so many different professionals potentially involved, Sam also highlighted the importance of having someone who can oversee a child’s care and prevent it from becoming fragmented.
One of the biggest themes from our conversation was uncertainty. For parents, it can be incredibly difficult to know what their child’s future will look like, particularly when some effects of brain injury may only become apparent as a child gets older. But uncertainty does not mean families have to face it alone.
There are professionals, therapists, community services and charities that can provide support depending on a child’s individual needs and circumstances.
We also discussed the importance of better data. Sam called for a national registry to help establish how many babies and children in the UK are affected by brain injury and better understand the physical, financial and economic impact of the condition.As policymakers, we cannot properly understand the scale of a problem or plan services around it if we do not know how many families are affected.
Ultimately, this episode is about making sure families know that they can ask questions, raise concerns and seek support.
A diagnosis can feel overwhelming. But parents should not feel that they have to navigate it alone.
My thanks to Dr Sam Amin and Emma Rush for joining me for such an important and practical conversation.
If you or someone you know is caring for a child who has experienced a brain injury, I hope this episode helps you feel more informed about what to look out for and where to turn for support.
LISTEN HERE: https://podcasts.apple.com/gb/podcast/s5-e10-baby-brain-injury-advice-and-support-for/id1791997791?i=1000790084697
Listen to the full episode of Breaking the Taboo on Apple Podcasts, Spotify or wherever you get your podcasts.
I’d love to hear from you in the comments. What do you think parents need to know about baby brain injury and the support available to families?
