Sunday, August 31, 2014

September is Hydrocephalus Awareness Month

Hydrocephalus is a condition of the brain that is derived from the greek word "water." Most people know it as "Water on the brain" or fluid on the brain. The "water" is actually Cerebral spinal fluid (CSF)  and it has accumulated in the brain because of a malfunction or defect not allowing it to leave the brain.

There are several forms of Hydrocephalus. The first form is congenital. Meaning that when you go in for that "BIG" ultrasound and they are looking and measuring the head, they are looking for abnormalities in the brain and head size to see if your baby has Hydrocephalus. It is a preterm diagnosis for most if the condition is congenital.

There is also acquired hydrocephalus in which the was some kind of trauma or damage done so that the CSF couldn't leave the brain causing a back up of fluid. This back up of fluid or obstruction, causes the head to swell and can cause blindness and brain damage if not relieved from the patient.

There is also a Normal pressure hydrocephalus that can be a cause of dementia and a few other forms. But the 2 above are most common.

Prematurity and brain bleeds are a huge factor for children to have acquired Hydrocephalus. Tyler was one of those statistics.

They University of Utah 2003 data suggested that 1-2 children in 1000 are born with Hydrocephalus and account for 0.5% of all PICU and neurosurgery unit admissions. It is a rare condition, but  a serious one none the less.

The only way to treat hydrocephalus is with a Shunt. Or a catheter in the brain with silicon tubing that runs under the skin and carries the fluid out of the brain and into the heart or abdomen. The shunt was invented in 1960. Very few major advances have been made to the treatment of hydrocephalus. The course of action is the same as it was SO long ago.

The failure rate of a shunt is 80% in the first year and can malfunction at any given time.

Hydrocephalus is grossly underfunded and research is almost non existent.

Tyler was diagnosed with Hydrocephalus in the NICU in October of 2005. We were transferred to PCMC where Tyler underwent his first brain surgery. He had a reservoir placed where his doctors could take fluid off his brain when it accumulated until he grew out of the condition or he needed a shunt. As time went on, he did have long spaces where we were not pulling off any fluid.

Tyler left the NICU unshunted. In February 2006 he underwent another brain surgery for a condition called Sagittal Craniosynostosis.  About 30 days after that procedure Tyler got very sick. We went by Ambulance up to PCMC where his heart rate was going lower and lower. Finally they did a CT scan and he went in for emergency brain surgery to have a shunt placed.

30 days after the initial placement of his shunt, and after a month of him crying non stop, we figured out that his shunt was over draining. We were immediately taken in and a revision was done on his shunt.

In 2008 Tyler got sick and was sick for about a week until we figured out that the sickness was not the stomach flu and we needed to go back in for another revision. 6 months later, his shunt and broken again and we were back in the operating room.

We have been stable, but every throw up sends me into a major panic attack. I don't know if it means brain surgery, or just a night of vomit. We have since developed seizures and have grown much bigger. But so far the shunt is still working. In the last year we have had a few ultrasounds, MRI's and CT scans where we see all the extra tubing in his belly. We also see the extra shunt in his head that they couldn't get out.

Tyler has slit ventricle syndrome and he is a very peculiar case. His Doctor, Dr. Marion " Jack" Walker, is one of the best neurosurgeons in his field in the slit ventricle department. We feel lucky to have him.

We would love to find a cure. We would love better treatment options. We need more awareness!

 We will be walking this year at the Phoenix walk in October. Please click HERE to donate in Tyler's name!

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