Hydro 101 - Causes and Cures and Treatments, OH MY!

In Gracie's case, we know why she developed hydrocephalus. She suffered a severe brain bleed in utero and a blood clot from the bleed prevented the CSF from draining properly. Unfortunately, we have no idea what caused the brain bleed.

 Some cases of hydrocephalus are caused by infection, some by trauma, but in many cases there is no known cause. Most cases (about 70%) are congenital, which means it is diagnosed before or shortly after birth.

There is no cure for hydrocephalus. There is no pill, exercise or magic wand to wave and make it all go away (trust me, I've prayed for one of those!) The only treatment for hydrocephalus is surgical - a shunt is surgically placed in the brain to help drain the fluid. There are three parts to a shunt - the catheter, the valve and the distal end. The catheter is a narrow tube enters the ventricle of the brain. The valve is usually placed outside of the skull (under the skin) and behind the ear. It's job is to control how much fluid is drawn from the brain. The distal end is a long tube that goes down the neck and into the area where the excess fluid will be absorbed.

Grace has an adjustable VP shunt. Since it's adjustable, her doctor can increase or decrease the flow with a magnet instead of having to do surgery. (It's a special, heavy duty magnet - fridge magnets won't affect it at all.) The "VP" refers to the part of the body where the excess fluid is drained. Gracie's distal end of her shunt leads into her abdomen, but in rare cases it can also be fed into the lungs or heart. Grace has a small scar on her belly where they had to adjust the placement of the tubing during her first surgery. If you feel above the scar, you can actually feel the tubing! You can also sometimes see the tubing in her neck if she turns just right, although that is getting harder now that she's getting chunkier.

The really bad thing about shunts is that they are not permanent. They can last 5 minutes or 50 years. In our case, Grace's first shunt lasted 7 months before it had to be replaced. Hopefully her new shunt lasts much, much longer.

Since there is no cure for hydrocephalus, Grace will need her shunt for the rest of her life. This treatment isn't just a one time thing - it's a constant, daily issue of watching for signs of malfunction. It's unexpected hospital stays. The possibility of major surgery looming over her sweet head regularly. Fear of her being hit in the head accidentally.

Grace had her shunt replaced in April and we are just now on the verge of getting the flow right. She's had 19 CT scans in her short life. The radiology department is on a first name basis with us and I have her neurosurgeon on speed dial.

I hate this for my daughter. I don't want this for the rest of her life. But these are the cards that we - and so many other families - have been dealt. I pray daily that they find a cure at some point in her lifetime.