Harry has Hydrocephalus which in his case, is caused by an Arachnoid Cyst. The cyst was discovered during a routine scan when I was 36 weeks pregnant.
What is an Arachnoid Cyst? “Arachnoid Cysts are cerebrospinal fluid covered by arachnoidal cells and collagen that may develop between the surface of the brain and the cranial base or on the arachnoid membrane, one of the three meningeal layers that cover the brain and the spinal cord”. We have been told that Arachnoid cysts are actually quite common and in most cases these cause very little problems. https://arachnoidcyst.co.uk/what-are-arachnoid-cysts%3F
In Harry’s case, the Arachnoid Cyst caused Hydrocephalus. The term hydrocephalus is derived from the Greek words “hydro” meaning water and “cephalus” meaning head. As the name implies, it is a condition in which the primary characteristic is excessive accumulation of fluid in the brain. Although hydrocephalus was once known as “water on the brain,” the “water” is actually cerebrospinal fluid (CSF) — a clear fluid that surrounds the brain and spinal cord. The excessive accumulation of CSF results in an abnormal widening of spaces in the brain called ventricles. This widening creates potentially harmful pressure on the tissues of the brain. https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Hydrocephalus-Fact-Sheet
Harry lives with a permanent VP Shunt. Babies born with hydrocephalus (congenital) and adults or children who develop it (acquired) usually need prompt treatment to reduce the pressure on their brain. If hydrocephalus isn’t treated, the increase in pressure will cause brain damage. Both congenital and acquired hydrocephalus are treated with either shunt surgery or neuroendoscopy. During shunt surgery, a thin tube called a shunt is implanted in the brain. The excess cerebrospinal fluid (CSF) in the brain flows through the shunt to another part of the body, usually the tummy. From here, it’s absorbed into the bloodstream. Inside the shunt there’s a valve that controls the flow of CSF and ensures it doesn’t drain too quickly. You can feel the valve as a lump under Harry’s skin on the back of his head. The tubing is sometimes visible in his neck.
We have launched Harry’s HAT (Hydrocephalus Awareness Trust) in a bid to address some of the issues and challenges which we have found since Harry’s (and therefore our) journey began.