Rose has congenital hydrocephalus, caused by Aqueductal stenosis. We found out about Rose’s hydrocephalus at our 20-week scan, and she was monitored throughout the pregnancy, with lots of extra scans at our nearest specialist neurosurgical hospital.

As Rose was well when she was born, the plan was to monitor her head circumference rather than intervene immediately. Unfortunately, after a few weeks, we spotted that Rose’s head circumference was rising. Ultimately, she needed surgery to fit a shunt when she was eight weeks old.

Although we have had many false alarms, Rose has thankfully only had to have one shunt revision to date. She is a happy, inquisitive, four-year-old who amazes us every day.

In the event of a suspected shunt failure, we head straight for the Emergency Department at our nearest specialist hospital. Fortunately for us, this is only a 20 to 30-minute drive away.

So far, Rose’s symptoms of shunt failure have been persistent vomiting and lethargy. As these are typical symptoms for bugs and viruses, our main challenge is usually convincing emergency doctors, even at the specialist hospital, of our feeling that this is ‘different’ and that Rose could be very, very poorly.

Unfortunately, Rose is usually asked to do a ‘fluid test’ on arrival, presumably to test the fact she cannot keep anything down. This test, combined with a very busy waiting room, makes for an extremely unpleasant experience for a child who potentially needs urgent surgery.

My main message to healthcare practitioners would be that we know Rose, we know what she is like when she is poorly, and we would not choose to spend the day in the Emergency Department if we thought she just had a bug. In an ideal world, we would arrive with Rose at the Emergency Department and then be sent for a scan to rule out any shunt issues, and then just sent home!