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Initial Hydranencephaly Diagnosis

Posted Oct 02 2009 3:07pm
Before my son, Brayden, was born his fate was an unknown aside from the fact that he indeed had a brain malformation of some sort. I was told he wouldn't survive the pregnancy to term, and when he did I thought they must be wrong. They told me that he would have severe breathing problems, wouldn't be able to regulate his own body temperature, wouldn't ever eat by himself, and may never even cry let alone open his sweet little eyes...ultimately, he wouldn't survive long enough to go home. When he proved them all wrong yet again, I wanted to believe they were wrong, but accepted the fact that we must be on borrowed time...miraculously enough. Social workers, medical students, doctors, nurses all swarmed our room day in and day out at first. He was scheduled for an MRI the morning after his birth, deep down I knew something was terribly wrong but I still hoped that it was the doctors and not my baby. Sadly, because of such a tumultuous pregnancy, I already felt so disconnected...I was afraid to be attached only to have him ripped out of my arms at a moments notice.

The MRI was completed and we waited what seemed like an eternity to find out the prognosis. Three doctors came to deliver the news, a neurologist, a pediatrician, and a hospital social worker...they all looked immensely sad, I remember their looks vividly. They told me his condition, but immediately after the conversation I couldn't have told you what it was called. It was all over in a blur and the only pieces I remember were are you going to take him home and wait for him to die or would you like to place him in a comfortable place for the rest of his days? I knew nothing else, but I knew that I was taking him home with me...I think that a few people tried to make sure I understood that he wasn't going to survive, and I was devastated, but I didn't really listen. I wanted more information first, in my medicated haze I knew that I needed that.

When I asked about getting more information about hydranencephaly, I was given this printed from the National Institute of Neurological Disorders and Stroke:

"What is Hydranencephaly?
Hydranencephaly is a rare condition in which the brain's cerebral hemispheres are absent and replaced by sacs filled with cerebrospinal fluid. An infant with hydranencephaly may appear normal at birth. The infant's head size and spontaneous reflexes such as sucking, swallowing, crying, and moving the arms and legs may all seem normal. However, after a few weeks the infant usually becomes irritable and has increased muscle tone. After a few months of life, seizures and hydrocephalus (excessive accumulation of cerebrospinal fluid in the brain) may develop. Other symptoms may include visual impairment, lack of growth, deafness, blindness, spastic quadriparesis (paralysis), and intellectual deficits. Hydranencephaly is considered to be an extreme form of porencephaly (a rare disorder characterized by a cyst or cavity in the cerebral hemispheres) and may be caused by vascular infections or traumatic disorders after the 12 th week of pregnancy. Diagnosis may be delayed for several months because early behavior appears to be relatively normal. Some infants may have additional abnormalities at birth including seizures, myoclonus (spasm or twitching of a muscle or group of muscles), and respiratory problems.
Is there any treatment?
There is no definitive treatment for hydranencephaly. Treatment is symptomatic and supportive. Hydrocephalus may be treated with a shunt (a surgically implanted tube that diverts fluid from one pathway to another).
What is the prognosis?
The outlook for children with hydranencephaly is generally poor, and many children with this disorder die before age 1. However, in extremely rare cases, children with hydranencephaly may survive for several years or more."

I copied and pasted that, but I've read it so many times that I could probably recite it to you word for word from shear memory. I immediately asked about a shunt being placed, and was told that it was basically pointless. That it wouldn't prolong the inevitable, and if he'd lived this long (a matter of days at this point) he would most certainly not survive a surgery under anesthesia. We were set up on Missouri Hospice Care, filled out paperwork to receive disability benefits and Medicaid...then sent on our merry ways with a good luck, and comforting words for our "dying" baby.

We had problems finding a pediatrician at first, my girls' pediatrician was gone for a month on vacation and I saw his fill-in Dr. He barely even examined my son, not even exactly sure that he touched him. He spent most of his time arguing with his mother, yes me, over his diagnosis and prognosis and the dire end that was coming soon although he didn't seem to have ever heard of hydranencephaly. I spelled it out, literally letter by letter, for him to say hydrocephaly or anencephaly the two couldn't be the same. Needless to say, I left quite angered that this Dr. didn't know more and immediately talked to our Hospice Nurse, Cheryl, about finding a better pediatrician.

This is where the story begins on Brayden's blog, I don't want to spend much time going in to every little detail here when it can be read there: www.caringbridge.org/visit/braydenharper Please follow his journey there, his journey to becoming the greatest miracle of my life...he already is that, but I know the future holds much more. I want to talk more about the condition itself now that I've set the stage with my own devastating diagnosis experience...my little miracle loves his momma, so this is going to take a lot of time. I'm hoping that through my own experiences and frustrations that I can help someone, connect to people, share what I've learned and what knowledge I've been given by other wonderful supports in my life. That's my hope.
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