So, what is hydranencephaly anyways? Hydranencephaly is a neurological condition that presents as the absence of the brain’s cerebral hemispheres to a great degree – think gray matter. No,these individuals are not missing their brains, despite what doctors will often tell parents upon diagnosis, as there is so much more to the brain than just that wrinkled up gray area. Nonetheless, the condition is debilitating and life-limiting, though, not without hope for a quality of life worth living. There is no definitive cause, but we do know that the condition occurs after the first trimester when the precious developing brain is damaged from a trauma of some sort, the type is really unimportant as there is usually no path to prevention. Most often the condition happens in a solitary occurrence and families are able to have other children without the defect, but in a small handful of families there is a genetic factor to be concerned with and we do recommend genetic testing to rule out that possibility.
Now that you have a better idea of the condition we represent, what is GHF doing to support these families? Currently we provide individualized family support to parents in a variety of ways and are working to build a sibling support as well, we have compiled an exclusive care notebook, which we provide free-of-charge to every custodial parent, we are working to build a more active equipment and supply exchange closet, we work to organize family gatherings for everyone to spend a weekend making real face time at minimum of once per year, and we provide tons of informational and awareness materials to hospitals, therapy centers, schools, and families, of course. This is only some of the support we provide, while our family-to-family resource network is the largest and most active online support group for parents of children with hydranencephaly and the foundation of our mission - having someone available 24/7/365 makes this journey as free of angst as possible. Our goal in all of this is to expand our efforts and provide better support to those international families as we grow and reach every area of the globe that our families reside.
As I mentioned above, the challenge of statistics – where do those statistics come from and why is this a challenge? Statistics come from the medical community and rely upon them to properly diagnose and report births of children with hydranencephaly or diagnosis within that first year of life in which it occurs. The challenge is that not every child is given the opportunity to be born. Let me be clear: those parents are advised to terminate their pregnancy based upon an ultrasound image that sometimes proves to be an inaccurate reading. Others who survive to birth are oftentimes are not given the opportunity to live because medical recommendation is to heavily medicate and not feed them. Still others are never even diagnosed because 1) it doesn’t matter, the brain damage is catastrophic and a label isn’t necessary 2) they survive and the condition is deemed “incompatible with life” so obviously it cannot be hydranencephaly or 3) doctors are just completely unaware that the condition exists and it’s misdiagnosed. Bottom line, the condition occurs far more frequently and we are working towards recognizing the possibilities that exist for these babies in order to ensure they are given every opportunity to live the best quality of life possible, just as every other human being on the planet. Part of the evolution of our mission is to place ourselves with a more grand voice within the medical community raising awareness and fighting for the lives of these children and building their parents in to the big voices we need to be successful in advocating for their children in to adulthood.
MISSION: GHF is a registered nonprofit organization providing individualized family support from the point of diagnosis until the end of time, in addition to medical and/or educational advocacy services to families across the globe that are facing diagnosis of hydranencephaly for an individual in their care. Through a wide array of ever-evolving projects and programs, we are working to shine a brighter light on the possibilities that exist for these individuals despite the medically subjected odds stacked against them
VISION: Global Hydranencephaly Foundation started in 2011 as Brayden Alexander Global Foundation for Hydranencephaly and just as our name has evolved, we also understand the need for our mission to evolve as well. Family dynamics change. Services expand. Needs grow and morph in to something that looks different just about every year. One thing that never changes is the need for accurate information and advocacy services for the 1 in 100,000 births that statistics would have us to believe are affected by hydranencephaly across the globe.Speaking of statistics, however, this is part of the challenge – the inaccuracy of those statistics, which we are working to correct.