She's 12 1/2 now. She was diagnosed at about 9 weeks old, after I had been expressing concerns about her (she also had 2 heart defects), and they gave her an mri scan. Her head grew alarmingly for the first couple of years, 4cm in one month, which really panicked me. Her head circ was off the scale, and her developmental milestones were delayed. She didn't sit until she was nine months, didn't crawl until she was 15 m, and didn't walk until she was 2.
Dd was monitored regularly by our fantastic paed neurologist in case she needed a shunt, but it never actually got to that stage. The hydrocephalus arrested naturally, which we were v relieved about of course. From then she was just checked up on every few months, until the age of 8, and she was discharged. She is above average intelligence now, and won a scholarship to a private school at the age of 7/8, so it is not all doom and gloom.
Having a shunt can be a mixed blessing. Of course if the amount of fluid is increasing faster than the ventricles can drain it away, then it causes pressure on the brain, as the skull cannot grow fast enough to compensate . In this case a shunt is introduced, which drains the fluid away from the ventricles, usually into the stomach. These are obviously necessary to preform or else the rapid and persistent fluid build up would ultimately be fatal. The problems of having a shunt , is that they can get infected , causing high temps, poor drainage etc, and then your niece would have to be operated on again to clear any blockages (iirc). However, I have to say that had we been faced with the possibility of having a shunt, we would have let her have it without a second thought, as the alternative would have been too dangerous imo.
These people would be good to talk to I think. We had a visitor round when dd1 was small, and they were v nice.
Let me know if there is anything else I can answer.