Hydrocephalus

Hydrocephalus is commonly known as 'water on the brain'. A watery fluid, known as cerebro-spinal fluid or CSF, is produced constantly inside each of the four spaces or ventricles inside the brain. The CSF normally flows through narrow pathways from one ventricle to the next, then out over the outside of the brain and down the spinal cord. The CSF is absorbed into the bloodstream and recirculates, and the amount and pressure are normally kept within a fairly narrow range. If the drainage pathways are blocked at any point, the fluid accumulates in the ventricles inside the brain, causing them to swell - resulting in compression of surrounding tissue. In babies and infants, the head will enlarge. In older children and adults, the head size cannot increase as the bones which form the skull are completely joined together.

Your Stories

I also had my son Ethan early. At 31 weeks I had been in and out of hospital with bleeding and contractions until my waters eventually broke - I went into labour 3 days later. Even though Ethan was my fourth baby (all premature) the labour was long and a lot more painful then any of the other births. There were signs that my baby was in distress which were ignored and after 14 hrs Ethan finally came into the world with the cord wrapped tightly around his neck. The midwife couldn’t unwrap the cord so had to cut it. Ethan was lifeless and floppy and had to be resuscitated for one minute (felt like a lifetime) before he took his first breath. He was stabilised and taken to the neonatal intensive care unit where he received breathing support for 22hrs before breathing by himself completely unaided. I thought that now our only problems were to get Ethan to feed and put on weight - he weighed 3lbs 10ozs at birth.

When Ethan was a week old, I was called in to see a Dr who explained that they had done head scans and that the news wasn’t good. Ethan had had a bleed in his brain which had caused an area of brain damage. I was told that it was very likely that he would be disabled although they had no idea how severely. He could need 24 hr care for the rest of his life or he could just grow up to be a normal boy developmentally- this was all they could tell me. They also said that he was at risk of developing hydrocephalus (a build up of fluid in and around the brain) but it was unlikely in a baby of his birth weight.

A week later on my daily visit I noticed that Ethan’s head looked quite large and was a funny shape with the soft spot slightly bulging out. He was looked at by Drs and sure enough my little soldier had developed Hydrocephalus. They decided not to do anything at that time as it could resolve itself. A week later again, his head was even bigger so they decided to do a lumber puncture where they insert a needle into the base of the spine and drain fluid out that way which meant Ethan’s head wasn’t so large and full of fluid. The large amount of fluid meant that there was increasing pressure on surrounding brain tissue which causes more brain damage and eventually death.

Ethan was allowed home after 4 weeks but still had to have regular checks. A nurse would come to the house every second day to measure his head and check that there was no major change in head growth. For the next few weeks Ethan’s head didn't seem to grow so we were told that the hydrocephalus was rectifying itself and was no longer a problem. Then at 15 weeks old I noticed Ethan’s head looked much larger than it had the day before. I measured it and it had grown by 2 cms in 2 days so I rang for the nurse to come and double check and she agreed that it had gone up. He was admitted to hospital and had to have another lumbar puncture. Ethan’s was in and out of hospital for several weeks having repeated lumbar punctures until eventually at 6 months old it was decided that Ethan needed surgery to insert a shunt which would drain the fluid from inside his head straight into his stomach.

It was a very nerve-wracking time but the surgery made a huge difference to Ethan. He recovered quickly and soon began to develop at a much faster rate than he had before. He also looked very different, before the op, he had looked a bit like an alien with a large misshapen head and bulging eyes, now he looked like a normal little baby boy. The shunt is only a treatment for the hydrocephalus not a cure. If the shunt fails (which they usually do at least once every 6 years) the symptoms of the hydrocephalus would come back and Ethan would need immediate medical treatment.

Ethan is now 2 years and 7 months old, luckily he has had no trouble with his shunt although we have had lots of hospital stays as whenever Ethan gets ill and we are not sure why, then he has to be checked out to rule out that it is a shunt problem. This is a nightmare as Ethan gets every bug going and seems to suffer much more than my other sons. He is doing really well although he cannot crawl, stand unsupported or walk yet as the brain damage has caused him to have a type of cerebral palsy which affects his left side, known as hemiplegia. He is also very small for his age, he still wears 6-9 month clothes. He is showing signs of learning difficulties but as he is quite delayed in most areas we wont know how severe for many years. He is also being tested for a form of epilepsy as he appears to be suffering from absence seizures in which he seems to be on a different planet and doesn't react to anything.

He is such a happy little boy though and believe me he knows it. - Vicky Herbert.

Association for Spina Bifida and Hydrocephalus

National office
42 Park Road
Peterborough
PE1 2UQ
Tel: (01733) 555988
Fax: (01733) 555985
Email : info@asbah.org

For further information please visit the website www.asbah.org

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