Hydrocephalus

Definition: is a term derived from the Greek words "hydro" meaning water, and "cephalus" meaning head, and this condition is sometimes known as "water on the brain". People with this condition have abnormal accumulation of cerebrospinal fluid (CSF) in the ventricles, or cavities, of the brain. This may cause increased intracranial pressure inside the skull and progressive enlargement of the head, convulsion, and mental disability.

Just typing this out makes me cry. Our sweet little baby girl was just diagnosed with this on Friday, June 20, 2008. Everyone keeps asking me how I knew so I will type you out our "journey".

When Aja was born and they took her to be cleaned and evaluated in the nursery they noticed that she had a bulging fontanelle (soft spot on top of the head). They, and our doctor had told us that it was because it was just a precipitous (fast) labor. We didn't think anything of it as hey, it's the doctor right?? Her head at that time measured 36 cm.

Fast forward to Tuesday when Aja was 4 days old. Her pediatrician asked us to come in and have her checked out. I pointed out that her head was not going down and he said, well it's still measuring 36 cm, just give it time. Okie doke.

Saturday, Aja is 1 week old and I whip out the tape measure that the hospital had given us to keep track on our own and I get a measurement of 39 cm. I was quite surprised, but prayed that maybe I had measured it wrong. Deep down though I knew something was wrong. As time goes on Aja's head is getting bigger and more shiny. She sleeps a lot and I can't understand why my newborn is sleeping more as she gets older rather than being more alert and active. Wednesday, June 18 Mitch and I are at the store and we are talking about Aja and we both notice that her temples are sticking out really, really bad. We get home and I measure her head again, making sure it's in the same spot as before and get a measurment of 41 cm. Mitch says, call the doctor and make an appointment for tomorrow.

Thursday, June 19 I call the doc and get in for our 2 week appointment and head check. The nurse measures and I ask her if 1.5 inch growth is normal. She says she has never seen it so no, it's not normal. Doc comes in and after much talking gets quiet and starts telling me about shunts. He orders an ultrasound for 4 that afternoon. Get the u/s done and come home at 5 and the phone is ringing. It's the doctor and he has told me to call Primary Childrens Medical Center department of Pediatric Neurosurgery. They want to see Aja the very next day. They tell me she has enlarged ventricles and needs to be seen. I call and make the appointment (of course I'm freaking out at this point, I mean neurosurgery??? holy crapp! what is going on with my baby!). It's for Friday at noon. We head to SLC that night. Friday we get to PCMC and meet with the doctor who tells us that she has what is called "sunsetting" of the eyes; so basically she can only look down as the pressure in her brain makes it impossible to look up, the fatigue (she slept a lot!), and her soft spots were spread out. He sent us down for a CT scan and had us come back to the office. He pulls up her scans on the computer and tells us that the dark spots are fluid, the white spots are normal tissue. There was much more black than white. Mitch and I broke down right there. It was bad. 3 of 4 ventricles were filled with fluid and the 4th wasn't in that great of shape. The doctor says they try to avoid surgery, but she needs it, and now. We get admitted at 8 that night.

Saturday morning Aja goes in for surgery at 9. We go into recovery and I break down. My baby is limp and her poor little head looks so angry from where the tube is going. The nurse tells us that with the amount of pressure on Aja's brain that it felt like a constant migraine headache. I break down again because my baby has been in so much pain, yet she has been so good. She hardly cried (or cries even now!)and she never acted like she was in pain. My guilt is running high, but I know that I did the best I could as I'm not an M.D.

Aja has it rough for a few hours, but they measure her head again and it's down to 40 cm already! WOW! We get many visitors that night and lots of support. Aja does so well! She is acting so much more alert, active and she has her newborn reflexes! It's amazing, too, how different her head looks. Her cheeks poke out further than her head! Before all this she had SO many soft spots, but they are slowly closing. Also, the fontanelle at the top reached the middle of her forehead indicating that her facial bones were spreading which could have caused her to require craniofacial surgery, but we caught it in time. That spot is starting to recede to its normal position. She might/will have to go through shunt revisions as they can malfunction requiring her to be seen and treated immediately.

I cry while typing this because she is so strong. She is so amazing that she has gone through this as well as she has. She will require the shunt for the rest of her life and she will have some limitations (as far as contact sports and stuff like that), she may have mental disabilities, but I don't care. She has such a strong, sweet spirit and she is as tough as nails.

This is a picture of 2 different shunt procedures. Aja has the VP shunt. That means ventriculoperitoneal.


This is Aja before. It really shows her temple sticking out and notice how shiny her head is.


This is where the shunt enters her head.


This is where the shunt goes behind her ear.


Here is an after picture of Aja. Notice how her veins aren't as prominent and her head is not as shiny.


I just wanted to thank all our family and friends for the love and support they have shown us in the last few days.