Friday, September 21, 2012

Flashback Friday: D-Day

D-Day = Diagnosis Day. 

Every parent remembers it like it was yesterday and while I'm sharing my personal experience, sadly it mirrors most others. Rarely do we find a family who is given hope and inspiration at the time the diagnosis of "your child does not have a brain" is delivered... I can think of one case off the top of my head. And I've spoken with hundreds of people who have been on the receiving end of those words. Rarely is the actual word "hydranencephaly" even mentioned, just "no brain"

"the baby is missing their brain. they will not see, eat, hear, or recognize their surroundings. they will live in a permanent vegetative state. they will likely suffer painful seizures, temperature regulation issues, and possibly heart and respiratory complications. if they live a few weeks, you'll be lucky."

Some parents get this diagnosis while they're pregnant, when they're supposed to be relishing a bliss-filled pregnancy experience. That is stripped away from them in an instant, as if they baby should no longer be celebrated. In fact, the diagnosis in utero often accompanies encouragement to terminate the pregnancy. That encouragement is based on the medically subjected misconception that the baby will not survive to term & if they do, it won't be a life worth living. My baby was no longer even called a "baby" instead it was "it" or "they" and he even had a name "Brayden Alexander"

"you can sign them over to the state and they can be cared for here in the hospital until they pass. you can visit if you'd like, or we can call you when they pass away."

Those words are delivered as if that's the only option. As if taking them home is not feasible; if it was, than you're ludicrous for wanting to take your ticking time bomb home to love them. Crazier yet, you're seconds away from a straight jacket when you ask for more information or family support groups.

"support groups and information does not exist for this condition since it is extremely rare & children do not survive. we can put you in touch with an infant loss support group and print off some general information for you."

"Infant loss support group," ... my child is living! The information I was given is the following information from the National Institute of Neurological Disorders and Stroke, from the National Institutes on Health. Their tagline is "reducing the burden of neurological disease..." This "packet" of information was a sheet or two of printer paper placed in a manila envelope, which was promptly thrown away once I arrived home from the hospital... with my little man.

NINDS Hydranencephaly Information Page

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 12th 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 rare cases, children with hydranencephaly may survive for several years or more.
What research is being done?

The NINDS conducts and supports a wide range of studies that explore the complex mechanisms of normal brain development. The knowledge gained from these fundamental studies provides the foundation for understanding how this process can go awry and, thus, offers hope for new means to treat and prevent developmental brain disorders, including hydranencephaly.

"in rare cases, children with hydranencephaly may survive for several years or more."

I literally can recite the NINDS definition of hydranencephaly word for word, I read it that many times. I can likely, four years later, still recite it nearly word for word.

I cried, then I doubted it, then I was determined...

I remember telling Brayden's dad and my own mother that there was no way that this is what Brayden had, there had to be a mistake. He was alive. He had a big 'ol noggin' but he wasn't doing any of these things they said he should be doing and he was doing all of the things they said he shouldn't be doing!! We took our 'lil man home because even if my heart was wrong, I knew I wasn't leaving him behind and giving up on him. The hospital signed us up for hospice and during discharge they gave me our follow-up appointment dates with an additional, "if he makes it until then." They even informed us that they had called the local rescue department and let them know we may call them when he dies... 

Brayden is 4 years old; some of his friends are much older and the oldest is the same age as his mother!! Just when you may wonder why Global Hydranencephaly Foundation is in existence, it is to be that group of individuals who can offer hope, support, and guidance when the people you rely on the most (your medical "professionals") can't. 

The National Institutes on Health has the following in their mission:
"NIH’s mission is to seek fundamental knowledge about the nature and behavior of living systems and the application of that knowledge to enhance health, lengthen life, and reduce the burdens of illness and disability."

One day, the information that exists will not be the doom and gloom prognosis delivered now, but rather a more optimistic outlook of the possibilities that DO exist amongst the list of limitations that MAY exist. Hydranencephaly will be a condition that is researched and delivered with much more grace and knowledge than exists at this time. We are working hard for that & our dedicated volunteers are committed to changing the lives of our little ones and those to come in the future. 

"A child with hydranencephaly only has the chance at a quality of life that you will give them; take all hope away and that life is taken away as well. Care for and love them, open their world to all the possibilities that exist to every other child and they will lead their own way; not without limitations but still full of possibilities. Believe in the impossible!" ~Ali Harper, Founder 

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