“a condition in which spinal fluid accumulates in the ventricles in the brain, enlarging the head and sometimes causing brain damage.”
This was a large word I had never heard of until I met Ian. I still can hardly spell it correctly. But this word changed my life forever.
No one knows exactly why someone develops hydrocephalus. It can develop in utero, which is rare. It is common after a traumatic exit through the birth canal. Or it can happen at any age, regardless of an insult to the brain.
For whatever the cause is, the spinal fluid gets blocked from flowing freely between the four ventricles in the brain down the spinal cord. This causes a swelling of the ventricles, putting pressure on the brain tissue. Without alleviating the pressure through a shunt it can cause damage to the brain and potentially death. For adults hydrocephalus is very life threatening because our skull is fused, so there is no where for the pressure to expand. Eventually there would be too much pressure on the brain stem and that would be cause of death.
Hydrocephalus in babies is a different outcome. Because their skulls are not fused yet, a child with this swelling would just have an abnormally large and continuously growing head. You can google images of children with hydrocephalus – and that picture is a thousand words of the suffering one goes through with this deadly condition.
The only cure for alleviating this pressure is a shunt. It is a tiny tube that goes from your ventricle down under your skin into your abdominal cavity. The release of pressure can be controlled by a magnetic dial under the skin. The tube is coiled inside your abdomen, so it expands as the child grows. Some individuals are shunted once their entire lives, some experience complications and have multiple replacement surgeries.
The miraculous thing about the brain is that it can compress and expand. The tissue is actually very soft, like a jelly texture. When the pressure is released, the tissue often expands causing what looks like ‘regenerated brain tissue’ on MRI images. And this is what makes Ian’s story so unique.
Ian was born with hydrocephalus, but Ian also had an aggressive brain bleed. If Ian just had hydrocephalus he could have perhaps ‘regenerated’ or ‘expanded’ brain tissue. Yet his brain bleed destroyed the tissue. Coagulated the tissue. What he has been given in percentage of brain tissue would give thought to a ‘no quality of life’ judgement. But Ian has shown us his enthusiasm to live. What matters is who Ian is now and how his life inspires us to overcome even the most catastrophic injuries.
