Hydranencephaly Definition – What Is It?


HYDRANENCEPHALY DEFINITION – WHAT IS IT?

natan shaiIf you’re new to the word Hydranencephaly like I was in the beginning, it can be quite daunting to hear this word, to say the least, and forget about trying to pronounce it!  But if your baby has been diagnosed with this condition then you’ll find that you’ll be rolling this word off the tip of your tongue in no time.  Not only that but you’ll have a ready explanation of the Hydranencephaly definition at the click of your fingertips.

How Do I Pronounce The Word Hydranencephaly?

So, first of all, let’s pronounce it correctly:  hydranencephaly hy·dran·en·ceph·a·ly

Say it a few times out loud and you’ll soon pick up on how it’s pronounced.

What Is The Definition Of Hydranencephaly?

You’ve probably read long explanations about Hydranencephaly which can be quite confusing to read natanshai.comabout and can take time to absorb.  If you’d like to know a detailed explanation of exactly what Hydranencephaly is then please read my page “What Is Hydranencephaly” .  This explains in detail the diagnosis of what Hydranencephaly is all about.

But here I’d like to provide you with a simple hydranencephaly definition which will be easy for you to remember and also give you the tools to be confident when somebody asks you about your child’s diagnosis and enable you to answer their questions at ease.

  1. Hydranencephaly is a type of cephalic disorder.  (Cephalic means head in medical terms).
  2. It is a congenital condition (Congenital means present at birth)
  3. The brain’s cerebral hemispheres are not present and instead the cranial cavities are filled with cerebral fluid.
  4. This should not be confused with Hydrocephalus although some babies born with Hydranencephaly also have Hydrocephalus.

When we brought Natan Shai home we had no idea what his diagnosis meant and truthfully we weren’t expecting such a serious condition and prognosis.  But although Hydranencephaly is a tough diagnosis, these kids are totally amazing and their will power to live shines through.  They often amaze the doctors who are left dumbfounded by their progress that beats any of the medical industries classic reports about this condition.

natan shaiThere definitely needs to be more Hydranencephaly awareness and much more research.  We hope that this will be the case in the very near future.  There are two important organizations who are doing all that they can to promote Hydranencephaly awareness.  They are called ‘Rays Of Sunshine’ and ‘The Global Hydranencephaly Foundation’. Both are voluntary organizations who connect with parents like ourselves and I highly recommend contacting them both.  They were and still are a fountain of support for our family.

Okay, so I hope that you now feel a little bit more comfortable with the idea of explaining what Hydranencephaly is and that you are feeling more comfortable pronouncing it.  You can now create Hydranencephaly awareness and educate even the doctors who although mean well really don’t know enough about this condition.  If you have any questions please don’t hesitate to contact me directly via our Contact Page or alternatively leave a comment below. Looking forward to hearing from you 🙂

Much Love,

Hannah (Natan Shai’s Mom)

 

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