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In Your Own Words... Kerry Williams

Kerry's daughter Megan has hydrocephalus. Megan was diagnosed shortly after her birth and had her first shunt operation at just 3 days old. Kerry tells us a bit about what it was like in those first few anxious months, and how proud she is of the young woman Megan is today.


Read Kerry's story here...

    • Members' Stories - Kerry Williams

On the 3rd September 1991, our daughter Megan was born. Due to my pre-eclampsia, the doctors decided that Megan would be delivered by Caesarean section. She was 10 weeks early. Megan was transferred to Special Care Baby Unit and for the next two days Megan breathed on her own and showed no signs of the desperate situation she would later find herself in.  

On the 6th September Megan’s lungs collapsed and she was placed on a ventilator. It was during this time that Megan had a brain haemorrhage and over the next month we could only watch as her head grow bigger and bigger. Doctors had diagnosed her with a condition called Hydrocephalus and she needed an immediate operation to have a shunt inserted into the 1st and 2nd ventricle of her brain. However, there was a complication - her protein levels were too high and they were unable to go ahead with the operation till the levels dropped. It would be 5 weeks later before the operation could be performed by which time Megan was very poorly.

On the 3rd November 1991 Megan was transferred to the world famous Great Ormond Street Hospital (GOSH) to have an MRI scan ready for her operation the following day. On the 4th November Megan had her shunt inserted and was looked after by the incredible Neuro team and especially Mr Richard Hayward, who not only looked after Megan but was so kind and reassuring to us.

Megan eventually came home exactly 6 months after she was born, it was a day we thought we would never see.

Fast forward to 1995 and I was expecting our second child. Megan was very excited about having a little sister and we were celebrating the fact that I had reached 32 weeks! However, this was short lived when Megan feel ill and was taken to hospital and tests confirmed that Megan had Meningococcal Septicaemia Meningitis. She would spend the next three weeks in hospital. By some miracle she survived.

Over the next year Megan had various smaller operations and also had mild asthma so we decided to move to the south coast and live by the sea. Megan was doing well and started at Primary school however It was at the end of her first summer term that Megan collapsed at school and was rushed to Hospital. An MRI scan showed that a cyst the size of a golf ball had grown in the 4th ventricle of her brain. Megan needed urgent surgery to have a 2nd shunt inserted. This time Megan’s recovery was slow and she remained in hospital for weeks after, it took months for her balance to return and for her to sit up and walk unaided.  

During all this time the Neuro team at GOSH were there to support Megan even through her transfer from child patient to adult at the Atkinson Morley in Tooting.

Fast forward to present day and Megan is now in her final year of her Post Digital Production TV Degree. Once again Megan has a challenge in front of her this is to complete her final year projects whilst on the 4th November undergoing surgery to have another shunt replacement. This is Megan’s second attempt to finish her degree as she was ill during her last attempt and failed. Determined to gain her degree she is ‘going all out’ to complete it, no matter what!

With her operation on the 4th November - exactly 25 years ago to the day that her first shunt was inserted - I want to raise as much money as I possibly can for not only Great Ormond Street Hospital but also for SHINE who supported people like Megan who have Hydrocephalus and / or Spina Bifida. Their continuing support is essential to children and adults living with these conditions. 

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Did You Know?

Some babies with spina bifida are now operated on before they are born, via keyhole surgery.

Hydrocephalus can be congenital or acquired.

NPH (Normal Pressure Hydrocephalus) is an excessive build-up of fluid in the head.

Hydrocephalus is a build up of excess fluid in the brain.

Some 11 - 35% of people with Intracranial Hypertension recover spontaneously!

Most babies with spina bifida undergo surgery within 48 hours of birth.

“Every effort should be made to ensure that all children are immunized, no opportunity to immunize should be missed.”

If you have spina bifida +/or hydrocephalus you should receive the same vaccinations as any others, when going abroad.

Hydrocephalus comes from the Greek "hydro" meaning water and "cephalie", meaning brain.

Some forms of hydrocephalus require no specific treatment.

Medical advice should always be sought if shunt infection is suspected!

Shunt: a device that diverts accumulated cerebro-spinal fluid around the obstructed pathways back to the bloodstream.

Possible signs of chronic shunt blockage include: 
fatigue, general malaise or behavioural changes.

A shunt alert card should be carried at all times by people with hydrocephalus treated by a shunt.

Possible signs of acute shunt blockage may include: visual disturbances, drowsiness and seizures.

Symptoms of Normal Pressure Hydrocephalus are similar to Alzheimer's, Parkinson's disease or simply increasing age.

NPH (Normal Pressure Hydrocephalus) occurs most often in people aged over 60.

Benign Intracranial Hypertension aka Idiopathic Intracranial Hypertension affects about one or two in every 100,000 people!

Symptoms associated with raised intracranial pressure; headache, visual disturbances, photophobia, vomiting, problems with balance...

Diagnosis of Intracranial Hypertension is by scan + measurement of the CSF pressure.

Babies born prematurely are at increased risk of developing hydrocephalus.

Shine can raise money by recycling your used inkjet cartridges, toners or CDs and DVDs.

Para-athletes with spina bifida and hydrocephalus compete in sports ranging from cycling to dressage.

Hydrocephalus may affect memory, concentration and behaviour.

The usual treatment for hydrocephalus is to insert a shunt into the brain.

CSF stands for cerebro-spinal fluid.

Benny Bear is a teddy with hydrocephalus who helps children understand the condition.

Shine is always looking for Marathon Runners to help with fundraising.

Spina bifida occulta is a hidden form of spina bifida.

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