So, what exactly is hydranencephaly? Hydranencephaly is classified as a rare neurological condition since it reportedly occurs in fewer than 1 in 10,000 births around the world, with a much lower occurrence rate of 1 in 250,000 in the United States. It presents as the absence of the brain’s cerebral hemispheres to a great degree – think gray matter. While doctors most often deliver the diagnosis by saying that a child is “missing their brain”, this is inaccurate. There is so much more to the human brain than just that wrinkled up gray area and while other areas are occasionally impacted; most often the brain stem and some preserved cortex, in addition to some of the interworking components, are still intact. While there is hope for a quality of life worth living, there is no denying that the condition is debilitating and life-limiting. In most cases, there is no definitive cause and no course of prevention. Hydranencephaly can not be cured. What we do know is that trauma impacts the newly developed brain some time after the first trimester and can even occur in infancy. In few cases, there is a genetic factor so testing is recommended, but most often the condition happens in a solitary occurrence and families are able to have other children without concern.
Now that you have a better idea of the condition, let’s discuss what GHF is doing to support these families. Currently we provide individualized family support in a variety of ways: providing Bee-Keepers handbooks free-of charge to every custodial parent, “The Hive” equipment and care item exchange with financial assistance for shipping, regular family gatherings that give the opportunity for families to come together to learn and grow through support of others on this journey, medical and educational advocacy services, a variety of informational and awareness materials provided to professional communities working with these individuals, and a mission that is maintained as fluid to adapt to the needs of our community. Our Family-to-Family (F2F) Resource Network, currently housed on Facebook, is the largest and most active online support group for parents of children with hydranencephaly and is the foundation of our mission. Having a support group to lean on, with someone available 24/7/365, is a priceless resource and has grown in to so much more than just an online support group – it is a family. Our goal in expanding programs is to always strive in providing the best support we can provide, especially to those international families as our message of life grows to reach every area of the globe.
With statistics come challenges. These come from a medical community and we rely upon them to properly diagnose and report births of children with hydranencephaly, as well diagnose those cases that occur after birth from trauma or infection. The first challenge is that not every child is given the opportunity to be born. To be clear, when diagnosed during pregnancy the most often recommended treatment is abortion; many cases that parents have denied this offer, the diagnosis has been inaccurate. Of those that survive to birth are oftentimes then not given the opportunity to live because medical recommendations at that stage include heavily medicating, or withholding nutrition and/or hydration, and no treatment for minor ailments that can be easily overcome. Still other cases are never even diagnosed based upon the idea that 1) it doesn’t matter, the brain damage is catastrophic and a label isn’t necessary for a life barely lived 2) they survived and since hydranencephaly is deemed “incompatible with life”, the diagnosis must be inaccurate and needs to be changed, or 3) doctors are just completely unaware that the condition exists in a living child and it is misdiagnosed all together. Bottom line, from what we have learned in the past decade, the condition occurs far more frequently than it is diagnosed. Because of this knowledge, we are working towards recognizing the possibilities that exist for these persons in order to ensure they are given every opportunity to live the best quality of life possible, in preservation of their human right to life. Part of the evolution of our mission is to place ourselves at full volume within the medical community in an effort to raise awareness and fight for the lives of these children and adults; while building their parents in to staunch advocates who are confident in speaking up to protect these rights.