Don't forget, shunts sometimes only partially block, usually due to protein build up on the catheters or small pieces of tissue that get stuck there, then as the pressure builds up, the shunt unblocks itself, but usually only temporarily. This can start a cycle that goes on for months, until the shunt fails completely.

My daughter, now 13, has had a shunt since 3 weeks of age. The neurosurgeon sent us home with our newborn, without telling us about partial shunt failures. I would call the doctor when vomiting would begin with my baby. The hospital would say time and again, the flu is going around. If it does not go away in 24 hours, bring her in. True to form it would go away usually within 24 hours, until one day it did not...it went on for over 30 hours.

Long story short...the doctors admitted that she had been having partial shunt failures for 11 months...I immediately switched her to a better hospital. I have never regretted that decision. It should not take 11 months for a team of doctors to recognize partial shunt failure. They should not have sent us home with a newborn, without this knowledge.

Find a great team of neurosurgeons and stick with them. Not all neurosugeons are created equal. Remember to do your homework, too, about the condition, and at least basic brain anatomy, so you can relate to the doctors better. You need to be able to speak to them from an informed position. Create a notebook that you can refer to, add information to. If you know more, you can ask better questions. Remember they are doctors, not gods, and they miss things, they do not know everything, they do not know what is normal for you or your family member. They are making decisions based on a limited amount of information, a snapshot in time. That is what you take to the table. You know what you or your child is like 24/7...they do not. Be respectful and appreciative, but do question what they say, and fill in the missing pieces of the puzzle for them, by keeping logs, etc. of symptoms, times of day, so they can see a pattern..so they have more to base their decisions on...not just what they see when they see you in the ER.