Hydrocephalus in newborn babies: why early diagnosis matters

It can be difficult for parents to understand a diagnosis involving their baby’s brain. Put simply, hydrocephalus is a condition where too much cerebrospinal fluid builds up in the brain. This can increase pressure on the brain and if the pressure is not treated, it can cause brain damage.

Some babies are born with hydrocephalus. This is known as congenital hydrocephalus. There are different possible causes. It can be linked to problems with the development of the brain or spinal cord. It can also occur in babies born prematurely following bleeding in the brain.

Hydrocephalus is relatively uncommon, but it can have serious consequences when it’s not identified and treated. Research suggests that congenital hydrocephalus affects around

When we investigate a possible delayed diagnosis, understanding exactly what type of hydrocephalus a baby had, when it developed and how it progressed can be central to working out whether it should have been picked up sooner. Understanding exactly what type of hydrocephalus a baby had, when it developed and how it progressed can be central to working out whether it should have been picked up sooner.

For some families, hydrocephalus may be identified during pregnancy. An ultrasound scan can sometimes show signs of the condition. However, not every case is detected before birth.

In some cases, signs only become clear after birth. This is why newborn checks are so important. If there are concerns about a baby’s health, doctors may carry out further investigations, including brain scans, to look for signs of hydrocephalus and understand what may be causing the symptoms.

Whether a diagnosis was possible before birth is often one of the first questions our specialists look at when reviewing a baby’s care. We consider whether there were signs during pregnancy that should reasonably have led to further investigation or referral.

It can be particularly worrying for parents when their baby is showing signs that something may not be right, but there is no clear explanation. The signs of hydrocephalus can vary. One sign is a baby’s head being larger than expected or growing more quickly than expected. Another sign is the soft spot on a baby’s head appearing swollen or feeling tense. Other possible signs include:

• Vomiting
• Problems with feeding
• Unusual sleepiness
• Irritability

Because all these symptoms can have other causes, hydrocephalus can be difficult to recognise. As parents, it’s completely normal to feel concerned when you notice changes in your baby’s health or behaviour. If you feel something is not right, it’s important that your concerns are taken seriously and that appropriate checks are considered. These symptoms are the kinds of signs we look for in medical records when assessing whether concerns were identified and acted on quickly enough. We may also look at whether the baby’s head circumference was measured and plotted correctly so changes in growth were noticed.

A diagnosis of hydrocephalus can be overwhelming. But understanding what happened and when can be particularly important to know what support you might need, and if you later have concerns about the care your baby received. For every baby, early recognition matters.

“When investigating a potential delayed diagnosis, we would look carefully at what signs were present, what was recorded in the medical notes and how healthcare professionals responded to those concerns. We would also consider the timeline of care, including head circumference measurements, growth charts, referrals and any scans or other investigations. The fact that hydrocephalus can be difficult to diagnose does not, on its own, mean that a delay was unavoidable.” – Sahida Patel, Partner and Birth Injury Team Lead.

For parents, the most important thing is making sure their baby gets the care they need. Early diagnosis matters because if the built up of pressure continues, it can cause permanent brain damage. In serious cases, untreated hydrocephalus can be life-threatening.

A late diagnosis doesn’t always mean that something has gone wrong with a baby’s care. Hydrocephalus can be difficult to recognise, and its signs can be linked to other conditions.

However, if there were clear signs that should have led to further checks, a delay in diagnosis can have serious consequences. The longer the pressure on the brain continues, the greater the risk of brain damage. This can affect their development and may lead to long-term difficulties with movement, learning or communication. In more severe cases, a child may need ongoing care and support throughout their life.

The legal question is whether the delay could and should have been avoided. We would look at what healthcare professionals knew at the time, what action they took and whether the care provided fell below the standard that could reasonably be expected. If a delay did cause or contribute to brain damage, the consequences can extend far beyond the initial diagnosis. A child may need long-term treatment, therapy, care and support, which can have a significant impact on their family and future needs.

“For families, the impact of a delayed diagnosis can go far beyond the initial diagnosis itself. Parents may be left wondering whether their child’s injury could have been avoided, or whether things might have been different if concerns had been acted on sooner. When we investigate these cases, we look at the full timeline of care and obtain independent medical evidence to understand whether an earlier diagnosis or treatment could have made a difference to the child’s outcome. These are difficult questions, but families should not feel that they have to answer them alone. Where there are concerns about the care a child received, obtaining specialist legal advice can help parents understand what happened and whether there may be grounds for a claim.” – Sahida Patel, Partner and Birth Injury Team Lead.

We understand that parents may want to know how a solicitor can actually help. When investigating a possible delayed diagnosis, we look closely at the medical evidence to build a clear picture of what happened.

This can include reviewing medical notes and referral letters. We also look at the timeline of appointments and treatment. Using this information we can see when symptoms were present and what healthcare professionals knew at each stage. This will tell us whether concerns were escalated appropriately. We also consider the relevant clinical guidance that applied at the time of the care.

We can then instruct independent medical experts to give an opinion on whether the care provided met the required standard.

For a birth injury claim to succeed, we generally need to show that a healthcare professional’s care fell below the standard you could reasonably expect and that this caused or contributed to your child’s harm. These are known as breach of duty and causation.

If your baby has been diagnosed with hydrocephalus, it’s normal to have questions. You might be wondering if things would be different if it was diagnosed earlier, or if it even could have been diagnosed earlier. You may also be worried about the impact a delayed diagnosis has had on your child’s health and future.

You don’t need to know whether medical negligence has occurred before seeking legal advice. Our specialist birth injury team can review the circumstances of your baby’s care and help you understand whether there may be grounds for a claim. If your child has suffered a lasting injury and needs ongoing support, there may also be wider legal considerations around managing compensation and making decisions about their future. In some cases, this can include Court of Protection advice and deputyship.

If you are concerned that your baby’s hydrocephalus was not diagnosed or treated when it should have been, contact our specialist birth injury team for a no-obligation discussion. for a no-obligation discussion.

“We understand that parents may be left with difficult questions when their child has suffered harm following a delayed diagnosis. Our role is to investigate those questions carefully. By reviewing the medical evidence and working with independent experts, we can help families understand whether the care their child received met the required standard, whether an earlier diagnosis could have changed the outcome and whether there are grounds for a birth injury claim.” – Sahida Patel, Partner and Birth Injury Team Lead.