Monday, September 3, 2012

National Hydrocephalus Awareness Month...

September 1st marks the beginning of National Hydrocephalus Awareness Month.

You many or may not know that Hydrocephalus is one of the many things that preemies can face.

Hydrocephalus is essentially means "water on the brain" but it is so much more then that. It is typically caused by a brain bleed (or intraventricular hemorrhage) or an abnormality of the brain or skull which blows the flow of fluid. Cerebrospinal fluid can then build up surrounding the brain or spinal cord. This build up can create pressure and cause brain damage.

In the NICU babies are typically monitored by measuring the circumference of their head, ultrasounds of their brain and even brain MRI's. Any rapid increase in growth would be cause for alarm and would result in taking a closer look (via ultrasound and MRI). A less serious case would be monitored but more severe cases requires surgery, where a tube (ventriculoperional shunt or VP shunt) would be placed to drain the fluid from the brain into the abdomen. In other small cases it can also be treated via a spinal tap or in an emergent situation until surgery can occur.

I won't go into "what can happen" as it varies very greatly, but I will say it was not one of the things we faced head on. Addison had a bilateral grade III and IV bleed, but showed not ventricular swelling and her brain MRI at discharge showed both were resolving. Blake had a grade III bleed on one side and it was noted that there was a small about of ventricular swelling; it was stable throughout most of his stay, they consulted with a Neurosurgeon to confirm the "watch and wait" plan, and his brain MRI at discharge also showed no swelling and a resolving bleed.

I have however met other mom's who little one's who have been impacted by this diagnosis. It is for those people that I am doing my part to raise awareness. If you would like more information I suggest visiting Hydrocephalus Association.

I also want to share with you the blog of a Preemie Mom friend of mine, her preemie twins were diagnosed with Hydrocephalus and she has done an amazing job sharing their story. Follow their journey here

(Special thanks to Joanna for allowing me to share her blog. Your boys are simply amazing and have a great set of parents to guide them through this life.)

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