September is Hydrocephalus awareness month. However, I am always trying to spread awareness to this horrible condition that one of every two babies of every thousand are born with. This is the number one reason for brain surgery in children.
My son has “Acquired Hydrocephalus” that was diagnosed right before his 11th birthday in 2014. He had never been sick other than normal “kid” stuff like colds and flu stuff. We didn’t know what was wrong with him and had him in to the local Dr.’s office 3 times before we finally got to see a different Dr. on the 3rd visit who sent him to the hospital for an MRI. We got the call soon after that he needed to be rushed up to Riley Children’s Hospital in Indianapolis, IN as soon as possible and the ER Dr’s up there would be waiting on him.
As a mother my entire life revolves around my family. I have spent most of my adult life as a mother to my 3 children. The moment I was told to get my youngest baby to a children’s hospital asap my heart broke in a million pieces.
The journey for the next 9 days would consist of sleeping in a chair next to my son’s bed, trying to keep it together for him, and praying a lot. One major thing that brought this to our attention initially along with severe upper shoulder and neck pain was vision distortion. His vision was deteriorating and mostly in the right eye. The Ophthalmologist was pushing for a shunt to get pressure off his optical nerve. The nerves were severely damaged and causing the vision issues. He was scheduled for a Ventriculoperitoneal shunt surgery soon after the recommendation of the eye Dr.
This programmable shunt system diverts the flow of Cerebral Spinal Fluid from the CNS to another area of the body where it can be absorbed as part of the normal circulatory process. His happens to drain in his stomach. A thin tube runs from the shunt down to his stomach to drain the fluid and keep his ventricles from enlarging. The photo to the right shows his shunt being reprogrammed after having an MRI, which resets the settings on the shunt and this special tool has to be used to get it set back to the correct settings.
The surgery was a success and he recovered very quickly with no problems. His vision slowly started returning to a more normal state and his optical nerve damage slowly was going down. He only has some partial permanent (for now) damage to his right eye vision. His color vision isn’t 100% in that eye and he has a halo if he looks to the right side of his eye. We are so very fortunate that this is the only permanent damage that was done.
He was released from the hospital just days before his 11th birthday in June 2014.
He was not able to swim until around June 20th after his stitches were taken out and that’s the weekend we had his birthday pool party at grandma’s house!
He has done very well since the surgery, knock on wood we have not had any bad news since the surgery and all the follow up’s with all the Dr.’s. He is now on schedule to just do 6 month check ups! He is doing great in school and has no physical signs other than a scar hiding in his hair that this whole ordeal happened to him. He loves to read and here he is posing with one of his favorite series books and his Hydrocephalus awareness crochet hat that I made for him.
I love the make new things and I have come up with a few Hydrocephalus awareness products that I sell in my Etsy store. I don’t charge shipping for them and I am happy to customize anything for anybody.
I will also donate a percentage of the profits to Hydrocephalus research.
Here are the things I have listed right now, just click this link:
Please also consider donating directly for this great cause through my dear friend. Her son Justin (picture below) is 7 and he also has acquired Hydrocephalus.