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Shine Legal Service

25th March 2024


Shine's support to families includes access to a legal panel of specialist law firms who understand the complexities and complications spina bifida, hydrocephalus and their associated conditions can bring. If you have any concerns about the care you or a loved one have received, a member of the Shine Legal Panel will be able to have a free, confidential discussion with you to help you understand what may have happened and secure the right support for you. 

Following on from Hydrocephalus Awareness Week, the panel want to highlight an important legal case that shows why it’s so crucial for healthcare workers to pay attention to a baby’s head measurements. When things go wrong, as they did in this case, the hospital Trust can be found to be responsible for the standard of care provided by the health visitors in charge of assessing a baby’s weight and head circumference.

XM v Leicestershire Partnership Trust [2020]

Baby Connor (not his real name) suffered a brain injury when his hydrocephalus wasn’t diagnosed, which caused the pressure in his skull to rise far above the level that is safe. This case is important as it is the first clinical negligence claim to deal with the standard of care expected of health visitors.

What happened

Connor was born in June 2012, and by December his parents began to feel that something wasn’t right. He was taken to an emergency walk in centre on 20 December 2012, which led to him being diagnosed with a rare, benign brain tumour.

The tumour caused an over-production of cerebro-spinal fluid (the fluid that protects your brain and spine) which built up around his brain. This caused his head to grow abnormally fast.

Connor’s tumour was successfully removed on 3 January 2013 but, by that time, he had suffered permanent catastrophic brain damage. By the time the injuries occurred, his head was so large that it was off the centile chart.

Why were the Health Visitors found to be negligent?

The hospital Trust was responsible for the health visitor service. Several health visitors had visited Connor’s home to check on his progress. Some health visitors had measured his weight, but not all had measured his head.

What had the Health Visitors done that was negligent?

One of the health visitors who had measured Connor’s head during a visit in August 2012 should have noticed discrepancies between his weight gain and the increase in his head circumference and should have either:

  1. Referred him to a GP or paediatrician for assessment; or
  2. Monitored the pattern and rate of growth of his head circumference and arranged for a further measurement to be taken 1-2 weeks later.

Connor’s head circumference at age 2 weeks was on the 25th centile and at age 6 weeks was on the 50th centile. This should have been a warning sign identified by the health visitor, but they either didn’t notice, or didn’t make a note of what was happening to Connor.

The health visitor also neglected to tell Connor’s parents about the discrepancy between his weight increase and his head circumference, or to ask them to monitor it in case it got worse. They had also failed to note the discrepancy in Connor’s medical records, or to let his GP know to ask for Connor to be monitored when he was seen next.

The Hospital Trust accepted that if a referral had been made following Connor’s August visit, the outcome would have been a re-measurement of his head, which would have led to diagnosis and successful treatment.

There were further allegations that the health professionals who had visited after August 2012 should have identified that Connor had not seen a GP for his 6–8-week check and encouraged his parents to book him in. He should have also been advised to see a GP because of the increase in head circumference and discrepancy in weight gain noted after the August visit.

Connor’s injuries could have been avoided if his care had been better.


Are you worried about the care provided to your child?

If your baby’s head circumference is measuring small or big, it can be a sign of an underlying health condition. Your baby’s length or height should be measured whenever there are any worries about weight gain, growth, or general health.

If you have any worries and concerns about whether your child has an injury because something went wrong in the care either you or they received, we can help you to find answers using the claims process. If there is not a claim, they will help you understand what happened and reassure you that no one is to blame.

A successful claim can give you the reassurance that any and all needs your child has that are linked to the reason of the claim will have been accounted for and funds will have been secured to meet them. That includes things like having funds to put care in place in the future and when you may not be able to provide it yourself. It includes funds for possible house adaptations or even a purchase of an adapted property to ensure they will live comfortably in a space suitable to their needs and get access to equipment, therapies, and support with education they may need. A claim can also cover any loss of earnings if you have had to give up work or change your role to support your child. These are all just examples of ways it can make a difference but are by no means the only ways. Many families use this process to get answers, get an acknowledgement of what happened and hold professionals accountable. Finally bringing a claim can pave the road to change as hospitals are more likely to invest resources into training and equipment to ensure that what happened is not going to happen again.


What can I expect from contacting the Shine Legal Panel?

The Shine Legal Panel has a lot of experience supporting families living with hydrocephalus and spina bifida. They understand that making contact with solicitors  can be scary and will do their best to help you tell your story and express any concerns whichever way you feel comfortable doing so.

In the first instance they will listen to you to understand what your concerns are. You may not be sure if something went wrong and that is ok! The panel is here to help you make sense of what happened. They will work with you to get any needed information including medical records to establish if the care you and your child received was negligent and then help you identify all the different things including care, equipment, adaptations and funds your child may need to live a life as close as possible to what it would have otherwise been.

Even if you don’t have a claim the process will help you get answers and reassure you that you have explored all possible ways to put support in place for your child's future.


If you have any questions, please do visit Shine's Legal Services page for further information and support.

Here is our information booklet on measuring head circumference.


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