My dear daughter was born with a head circumferance that was off the charts big. This was to be expected - the fluid that her brain was producing was trapped with no where to go and therefore her skull expanded. Her surgery to place the shunt took care of that problem and drains the fluid for her. For the first few months I was always relieved when we would be at a doctors appointment and her head would remain stable. This was good...her shunt was working....no fluid was building up. However, as of yesterday, her head circumference is still the SAME size as birth. At four months it should have grown some.
It has been concluded that we are facing one of two possibilities - neither of which sound too good. First, her brain might not be growing. A skull only expands when pressure pushes it out. If her brain is not growing, the skull has no reason to grow. The neurologist in Spokane told us that her brain might have been so damaged from the hydrocephalus that it won't grow. This condition is called microcephaly meaning "small brain". This diagnoses would mean that she would probably have a low intelligence level (something that we were already anticipating due to the brain malformations) and a small head.
Second possibility- craniosynostosis - or the premature fusing of the sutures of the skull. The skull is made of several pieces that are separated by sutures to allow for brain growth. If these sutures close to soon, the brain cannot grow. This may be a possibility. Elisabeth was born with no soft spot and her sutures have always been prominent and visible. If this is the case she will have to under go surgery to open the sutures back up. When I asked the doctor yesterday if this would be a surgery similar to her shunt placement (rather routine) she smiled and said "no, this is more like taking the head apart and putting it back together like a puzzle."
So this is where we are at with my angel. The neurosurgeon is out of the office till Monday and the pediatrician is planning on discussing this with him then. No doubt there will be more exams, MRI's, etc to figure this all out. In the mean time Elisabeth continues to be the snuggliest and most content little baby I have ever seen. She is happy in her own world and that is all that matters. I continue to do "music time" with her each and every day. She lays on a blanket by the piano and just listens. She remains perfectly still and seems to be focusing on every note of every song. When I am done playing for her, it's her turn. I put her on my lap and place her hands on the piano keys. Her hands -which are usually in a tight fist- open up and sometimes you will see a smile spread across her face. She has learned the feel of the piano and although she doesn't have the strength to push the keys on her own yet, she seems to love having me help her. I am truly blessed to have Elisabeth as a daughter and love her more than I could ever put into words.