Wednesday, April 11, 2007

The Tiki Gods & Hydrocephalus

This is not a story about the Easter Islands and a mythical creature. It's not a bedtime story that I read to the twins. I guess that everyday I could go on, waxing poetic about the joys and trials of raising Creed & Zelda BUT, that's not what this is about. Yes, our twins are great, funny, sassy, suuuuper smart and enormously talented. They do amazing things that no other toddlers have EVER done before! Uh-huh.

But I need to talk about the Tiki Gods. Our kids are where they are today thanks to the Tiki Gods. These guys are the neurosurgeons that treated our babies during their stay in the NICU at Texas Children's Hospital. They are Dr Robert Dauser, Dr Hatem Megahed, Dr Justin Brown, Dr Thomas and their faithful nurse Sharon. They would emerge silently in NICU at 6am, measure the kids' heads and jot down their incomprehensible scribble of notes. Evan would often lay in wait, we called it "trapping a neurosurgeon." They would then appear again on rounds, stoic, taciturn, unrevealing unless pressured to give answers. What began as a combative relationship of "Sure, we'll just throw a shunt in there and see what happens" turned into a relationship a mutual respect and often humour. Dr Dauser regaled us on a daily basis with a joke or two and still does when we have our 6 month check-ups. We had code-names for all of them and Evan created the Tiki Gods cartoon.

Upon discovering the congenital toxoplasmosis raging through the bodies of our twins, we also had to look carefully at their brains and their eyes. These are the 2 areas that are greatly affected by this infection. Having already told you about the eyes, let's talk brains. Both kids had hydrocephalus that is, swollen ventricles. Fluid was building up in their little noggins and this fluid was placing pressure on their developing brains -and at some point would hinder their growth and therefore their development. So, what does one do? One gets the Tiki Gods to first, tap the brain - that is, insert a long needle into the area and pull off some of the fluid. The baby screams bloody murder and the parent hides off to the side. I cannot tell you how many times both of the twins have had to endure this procedure. The CSF (cerebral spinal fluid) can then be tested to see if it grows any infection or if it's clear - then they can proceed with surgery.

Now, 18 months later, both of the twins have double VP (ventricular peritoneal) shunts - there is a small drain piece in their brain that is attached to a tube that runs down the side of their neck into their abdomen.* The fluid naturally drains off of the brain, therefore avoiding build-up or pressure, and then travels down the tube. It empties into their abdomen and is reabsorbed into their system. Each of the babies has a VP shunt on each side of their brain - we call it "dual exhaust" or "stereo". At first, one could see the lumps under their skin directly behind their ears. Now, their hair as grown over - thank the Lord! - and we don't even notice the shunts.

Will they have them in forever? Probably.
Do will still have to watch for infection? Yes, it's always a possibility.
Will they have to wear helmets when learning to walk? No, no and no.
Will they be able to head a soccer ball? Wouldn't recommend it.

So, thanks to the Tiki Gods our kids have regained the normal use/growth of their brains. It could have been a scary situation. They continue to develop normally and look like any other kids out there - they just have tubes in their heads.

*Zelda had her 1st shunt put in at about 6 weeks old - she technically wasn't even born yet! That shunt became infected and had to be removed. It was then replaced 3 months later before she was discharged from the hospital. She had a shunt revision (it had become clogged)in August of last summer. A few days later, a 2nd shunt was placed. Total brain surgeries: 5.

Creed had his first shunt placed at 3 months of age while still in the hospital. Upon discharge, he went back in at the age of 9 months and had a 2nd shunt placed. Total brain surgeries: 2 - plus numerous tappings.


Karla said...

OK, I have a question: As the babies grow, do they have to lengthen the cord of the shunt that goes down to their bellies? They will grow taller, so will they need longer drainage cords? I am curious.

Such beautiful babies!

toxomaman said...

You are too funny...but it's a good question. They put in a coil of very slim tubing. As they grow the tubing unravels and stretches accordingly. At least that's what the Tiki Gods of told me.

Oh, and thanks!:)

Anonymous said...

The Tiki Gods...I forgot about them. I remember being with Aidan early in the morning as they would "sneak" in. What was the head doctors nickname?

toxomaman said...

Would that be "Droopy Dog Dauser"? He reminded us of a cartoon character:)

Anonymous said...

I found your blog on a search and was interested. My son also sees Dr. Dauser for Spina Bifida and I have to say we he reminded us of a cartoon character also. All said though we fell in love with him. He offered us more hope and encouragement than anyway else.