My Child with Hydrocephalus – His Brain is Smaller than Expected

My boy’s brain is my heartache, one of them at least. Torran is a child with hydrocephalus, and that means that I’m more aware of his anatomy than most parents ever care to think about their kid’s brains.

Hydrocephalus is the accumulation of fluid in the brain. For most of us, drainage of cerebrospinal fluid (CSF) occurs naturally. Torran’s bleeding in his head at birth (a result of his prematurity) caused a clot. The blood clot in his brain stopped the fluid from leaving his ventricles. He had neurosurgery on the day he should have been born, and several brain surgeries since then to fix his shunt went it fails. His last shunt repair was on New Year’s day 2013.

IVP hydrocephalus shunt
Enlarged ventricles due to failed brain shunt.

We really like Torran’s neurosurgeon. He’s direct without being rude – exactly the kind of doctor we appreciate. At the last follow up appointment in2014, I saw the size of the cyst in Torran’s brain. Although he is a child with hydrocephalus, the cyst was caused by the bleeding in his head at birth and the resulting hole(s) in his head will never go away. To me (and I’m not trained at looking at scans) it looked like he’s missing a big chunk of his brain. I had kept myself composed until I reached the busy traffic of University Ave. Then, I called Bruce in tears, barely able to speak, while Torran merrily pranced on the sidewalk.

Last Monday, our neurosurgeon stated quietly, “Well, we know his brain is smaller than expected.”

Smaller than expected. Those words carry so many implications. The problem is, there’s no way to predict Torran’s outcomes. He’s doing well at school, with support, for the moment. Torran reads, understands the academic curriculum at school and keeps up (in some cases excels). We know he has challenges with his social interactions because of his damaged corpus callosum and Autism. Will he be able to overcome the challenges of his hydrocephalus and the effect of his brain damage in his upcoming milestones and developmental thresholds? That remains to be seen.

All we can do is keep on top of him, knowing what is expected for his future, and intervene as much as possible. This makes long term planning difficult. For example, I’m afraid to put too much money aside for his post-secondary education in an RESP, because he may not mature beyond his school-aged years. In the short-term, we only travel to where we know the country has the capacity for children’s neurosurgery (or not too far from it).

And it’s a silent hurt that I carry with me every day. I don’t wave a flag and say, “Hey! That  weird acting/looking kid you’re staring at has fewer brains than you and went through more in his life than you ever might.” No, I don’t. I just shush my child and expect him to adhere to social behavioural standards that no longer seem to exist.

No matter what happens to Torran, or how far along he develops, we will support him and give him every opportunity we can find. He is a poster child for oligohydramnios survival. Torran is a brilliant example of a premature infant’s spirit for life. We are a family who cherishes every moment that we can, while working hard to have the same goals for our child as as everyone else, regardless of the ranging effects of Torran’s hydrocephalus, hearing loss, retinopathy of prematurity, autism, cerebral palsy, thrombocytopenia, portal vein thrombosis and very very very active nature (but not hyperactive, just “busy with a purpose“).

perseverance award