Tuesday, July 20, 2010

the diagnosis is "Hydranencephaly" hydro-cephaly = anecephaly

Hydranencephaly is a congenital malformation of the brain characterized by the absence of the cerebral hemispheres, an incomplete or absent falx and a saclike structure containing cerebral spinal fluid surrounding the brainstem and basal ganglia5. Approximately 1 percent of infants thought to have hydrocephalus by clinical examination are later found to have hydranencephaly3. Hydranencephaly is found in 0.2% of infant autopsies.
After doing a lot of reading and researching I spoke with and emailed with the doctor and asked if  THIS, rather than hydrocephaly  was a more accurate diagnosis for Daniel and he told me that this was more than likely the case after reviewing the MRI  films again. My use of the words "small brain" earlier were incorrect. Daniel has very little brain, not a small brain. His other physical characteristics fall more in line with this diagnosis as well.  The aim of surgery for children with hydranencephaly is comfort since there is very little hope of increased brain function after shunt surgery. We discussed  Daniel in more depth and how a shunt would be the better choice, perhaps the only real viable option for Daniel. Several hours later the  nurse called to ask if we were ready to go forward  and if we were, did we want to be included on Wednesday's surgery call. Charlie and I had spoken some, but with this call, we needed to talk immediately and were in agreement about the shunt surgery  and that doing it as soon as possible would be the best choice. The surgery date of Wednesday July 21  was confirmed yesterday afternoon. Today we went to the hospital for pre-op lab work and paperwork. Daniel pitched a huge angry fit over my putting shoes on his feet, a huge fit.  When the nurses applied the tourniquet to first his arms and then to his legs in an effort to find a vein, he didn't fuss at all, he barely responded. Even having his heel stuck for the blood work didn't initiate a cry. What a boy!!!! Everyone has been so very tender to Daniel and I am so grateful. SO  different from our  DAY ONE seeking medical care!!
We will take Daniel to the hospital tomorrow early, he'll have the surgery about 11 o'clock and believing that all will go well, he will be discharged on Thursday afternoon!! I'd like to thank you all ahead of time for your prayers for Daniel while he is in surgery and during his recovery period!


Mom to 9 Blessings! said...

Praying over you all now!

Love you!

Ali said...

Hi! I found your blog through Google alerts on hydranencephaly. My son, Brayden (http://www.caringbridge.org/visit/braydenharper) recently turned 2 and is doing amazing things despite his grim prognosis with hydranencephaly. I also have a personal blog full of information, resources, networks, inspiration, etc. for parents with hydran children as well as other similar conditions. If you are on Facebook, I am also admin to the International Hydranencephaly Group where you can network with most all of the other families we know of, with children who have hydran.

Look forward to being in touch with you soon. Hydran is a very scary, and unpredictable diagnosis... but it doesn't have to be full of unknowns!! Feel free to email me: ali_nichole0619@yahoo.com

love & hugs to you and your family! XO

Dawn - "Are These Kids All Yours?" said...

Will be praying with you & for you all!!!

Kat said...

We will be praying...praying...and more praying.