Hydrocephalus is defined as the excessive accumulation of cerebral spinal fluid in the brain.  Without treatment, it causes a great deal of pressure on the brain, resulting in damage or even death.  There are two main forms of hydrocephalus, congenital and acquired.  Although A&R were diagnosed at a very young age, they were not born with this condition.  They acquired it as a result of the circumstances under which they were born.   

What does this mean for our family?

Hydrocephalus in kids as young as A&R is most commonly associated with Cerebral Palsy.  In essence, CP is either low muscle tone or high muscle tone.  Tone is not exactly what it sounds like.  It doesn't originate in your muscles but is controlled by your cerebellum, which is located in your brain.   

Upon discharge from the NICU, Aiden and Ryan had MRIs of their brains.  All these MRIs did was confirm what we already know.  They have brain damage.  No one can tell us what this means for their future or their actual development.  We were told to expect some form of CP, but not enough is known about the brain in order to determine how severe it will be.  All that is known for sure is that they both have significant volume loss in their brains and that Ryan would require more intervention than Aiden. 

When we had this conversation with Dr. Mittler, my world was shattered.

Enter Dr. Google.  Since our real life doctors have to prepare us for worst case scenario, it was my job to seek out best case scenario.  Apparently, the brain is so magnificent, that it is able to make new connections for whatever is lost due to brain damage.  That is why therapy works and why it is important to begin therapy as soon as possible.  Even better, babies this small have a pretty good chance at making these new connections since their brains are still developing. 

World is slowly being glued back together.

So, here is the deal.  Aiden & Ryan get physical therapy once a week through Early Intervetion, which is a program funded by the state.  We just requested additional services (more PT plus hopefully OT) because they are a bit more delayed than their developmental pediatrician would like.  Aiden was diagnosed with low tone, which means his muscles are too loose for him to be able to carry out a particular action.  Ryan, on the other hand, was diagnosed with high tone.  His muscles get tight, or spasm, which prevent him from being able to do certain things. 

Regardless of this early diagnosis, we haven't a clue what the future holds.  Like I said before, with therapy they CAN improve and go on to lead normal lives.  We just have to wait and see as they develop.  I hate this waiting game.  What we do know, though, is that their therapists do see improvement and their physicians are somewhat pleased with their progress.  While we hope that Aiden & Ryan beat all odds and remain unaffected by their condition, we are prepared for anything.  They will always be our sweet boys and they will always be loved like no other. 

The boys are 10 months old and their motor skills are at a 4-6 month level.  There are days when I can't help but get discouraged, but to be quite honest, this mama knows that all they need is time.  After all, time heals all wounds, right?

1 comment:

  1. Very informative post regarding hydrocephalus. I agree with your post the it is mainly located in children. BGS is one of the Top 10 hospitals for hydrocephalus.


Related Posts Plugin for WordPress, Blogger...