One page summary: Hydrocephalus after birth injury

In two sentences

Hydrocephalus means too much spinal fluid inside the brain. The fluid is made continuously, and if it cannot flow or be absorbed normally, it builds up and presses on brain tissue. ¹

After a birth injury, the most common route to hydrocephalus is bleeding in the brain of a baby born early, where blood blocks the normal drainage. ² The most important thing for a family to learn is the list of warning signs that a shunt has stopped working.

The numbers, with their sources

• What the fluid does. Spinal fluid is made continuously inside the brain, flows through the ventricles, and is absorbed. Hydrocephalus is a problem of flow or absorption, not of making too much ¹
• The common route after birth injury. Grade III and grade IV intraventricular hemorrhage in premature babies, where blood blocks the drainage pathways ²
• The main treatment. A shunt, a thin tube that drains fluid from the brain to the abdomen where the body absorbs it ¹
• An alternative in some children. Endoscopic third ventriculostomy, a procedure that makes a new drainage route inside the brain without leaving hardware in place ¹
• Shunts fail. Shunt blockage and infection are recognized complications that can happen at any age, which is why families are taught the warning signs ¹
• The simplest monitoring. Head circumference measured and plotted at every visit, because a head crossing upward through the percentile lines is often the first sign ¹

What to do this week

1. Ask for the ventricle measurements over time, not a description.
2. Ask what number or change would trigger surgery.
3. Get head circumference measured and plotted at every visit, and ask to see the chart.
4. If a shunt is placed, write down the type, date, surgeon, hospital and warning signs, and put a photo of that note in your phone.
5. Ask whether endoscopic third ventriculostomy is an option.
6. Ask who to call at 2 a.m., and where to go.
7. Refer to early intervention.

Questions to take with you

Take these with you. Write the answers down in the moment, because you will not remember them later.

For the neurosurgeon

• What is causing the blockage, and where is it?
• Is my child a candidate for endoscopic third ventriculostomy instead of a shunt?
• What kind of shunt and valve, and why that one?
• What are the warning signs of blockage, and who do I call?
• How often will this be checked as my child grows?

For the neonatologist or pediatrician

• What are the head circumference measurements, and can I see them plotted?
• Are the ventricles enlarging or stable?
• What is the plan if they keep growing?

For the school team, later on

• Has my child had a full assessment, including attention, organization and processing speed?
• Does the school nurse know the shunt warning signs?
• Is the shunt in the written health plan?

You can also build a printable list with the question generator.

Where to read more

The full page on this condition covers how it happens, causes split into what happens even with perfect care and what is associated with gaps in care, signs by age, diagnosis, treatment, outlook, daily life and lifetime cost.

Read the full page on Hydrocephalus after birth injury

Related pages are listed at the bottom of it, including the events that can lead to this condition and the guides that cover therapy, school and money.