Coping With Hydrocephalus

My son, now three years old, was born as a 26 week preemie and weighed only 2 lbs 5 oz. Among other things (brain bleeds, ROP, apnea, bradycardia,etc) he was diagnosed with hydrocephalus. You can imagine my fear when the neurosurgeon carted my little 3 1/2 week old preemie to surgery for shunt placement. The shunt is a plastic ‘valve’ (more or less) that regulates the CSF fluid in the brain. It has a long plastic (small) tube that is attached that allows this fluid to drain down into the abdomen. All of the ‘hardware’ of the shunt is under the skin. The shunt prevents the CSF fluid from pooling in the brain and causing dangerous pressure.

My son came back from surgery with what appeared to be a huge bulb on his head behind his ear and a long raised ridge beneath his skin that ran down the length of him nearly to his belly button (off to the side). I was worried that it would be visible like that for his life but rest assured - a little 3 lb preemie has a way of getting bigger and putting on fat and it’s all covered up. There is a small indention visible in his stomach where the shunt ends and if you rub your hand over his head you can feel a bump where the shunt is but other than that - no one, save a doctor, would have a clue it’s there.

My son did beautifully through shunt surgery and shunt revision several months later. The shunt revision was due to arachnoid cysts that developed after birth and had nothing to do with the actual shunt itself. After another illness (that’s a different, longer story) my son had to have the original shunt removed because of staph and yeast infection in his CSF fluid so he underwent shunt removal and replacement. Again, he came through surgery beautifully. The neuro that did the operation claims that shunt placement is like changing the ‘plumbing’ and it’s not a complicated matter. I guess that’s why he is the surgeon and I am the mommy. Either way, a shunt is nothing to be afraid of and my son is bright and happy and alert and that would not have been possible without the shunt placement.