The National Institute of Neurological Disorders and Stroke has an excellent Fact Sheet about hydrocephalus that explains how excessive accumulation of cerebrospinal fluid (CSF) in a baby or child's brain causes an abnormal widening of spaces in the brain, creating potentially harmful pressure on the brain tissues. They offer information on different types of hydrocephalus, and an explanation of the most common form of treatment, shunt systems that regulate the balance of production and absorption of cerebrospinal fluid, diverting the extra CSF to an area where it can be absorbed. There are also links to national advocacy organizations and parent support resources.
Hydrocephalus can be diagnosed prenatally through ultrasound, and there have been some clinical trials of fetal shunting that treats hydrocephalus before birth. Some medical professionals consider early delivery and early shunting after a prenatal diagnosis with complicating factors. The Children's Hospital of Philadelphia gives extensive information on treatment options with a prenatal diagnosis, including statistics on factors like a higher rate of shunt infections can complications more common in premature births. According to their website, hydrocephalus is a condition that is said to affect up to 2.5 per 1,000 live births, making it one of the most common birth anomalies involving the nervous system
Babies with hydrocephalus are not always diagnosed early even though they may show symptoms that cause families to consult their pediatricians. I recently met a family whose baby recently had brain surgery following a delayed diagnosis due to the symptoms of pediatric hydrocephalus being mistaken for other conditions.
Although her child is still so young, the experience had caused one more mother to be dedicated to raising awareness, advocating for research into additional treatment options, and seeking of support for individuals with pediatric hydrocephalus and their families.
Browse at your public library, local bookstore, or online retailer for books for children, like All About Me (and my shunt) or My Brain Won't Float Away/ Mi cerebro no va a salir flotando and books for adults like 100 Questions & Answers About Hydrocephalus.
Hydrocephalus Fact Sheet
The Children's Hospital of Philadelphia
Center for Fetal Diagnosis and Treatment
Overview of Hydrocephalus