June is Hydranencephaly Awareness Month

Ultrasound featuring Brayden Alexander

On June 30, 2008, a brown-eyed little man was born that wasn’t supposed to be. He had been given a grim prognosis at around 22 weeks of life within the womb, one that gave the doctors a reason to advise termination of the pregnancy. According to the neonatologist, he was not going to survive to birth. There was a minuscule chance that he may, but if he did he would suffer through a life not worth living. Due to the severity of the brain malformation detected on that ultrasound, he would not manage to regulate his own body temperature, eat orally, or breathe independently; he would suffer from painful, uncontrollable seizures and would be in a permanent vegetative state for the time he was on earth. He would not recognize us, would not be able to see or hear, and he would never feel our love for him since his senses would be inoperable without the vital areas of the brain that were noticeably missing. But when this baby made his grand debut, none of those predictions proved to be accurate.

After being delivered via emergency cesarean section, it was visually apparent that he had severe hydrocephalus: a build-up of excess cerebral spinal fluid within the cranial cavity surrounding the brain. Other than this, or even WITH this, he was no less than perfect! And he was certainly loved from before that very meeting. 

Brayden Alexander Harper was diagnosed with hydranencephaly after an MRI the morning after his birth. This diagnosis was one that would prove to be life-altering for far many more individuals than could ever be anticipated at the time. As mommy, I faintly remember the many days afterwards, wandering in a thick fog of incredibly frightful unknowns. Doctors explained to Brayden’s daddy and I, as well as our families, the condition according to a small snippet from medical textbooks, the only available information then and even now. He was missing most of his brain and his condition was “incompatible with life.” This doom and gloom presentation, given by those individuals who we put our faith and trust in, was later realized to be a common misconception associated with a diagnosis of hydranencephaly. Parents, just as we were, are and continue to be stripped of every ounce of hope for their child.

Fortunately, Brayden led the way and showed his doctors and the rest of the world that would listen, every reason to “believe in the impossibilities.” Aside from a surgery to place a programmable shunt in order to regulate flow of cerebrospinal fluid away from his head, he was perfectly healthy. He had a vicious appetite, showed no signs of seizures or pain and suffering, and he displayed every sign of happiness and love that any baby would share. With the support and guidance of other parents who began this journey before his, along with us, or even after us; we were able to stand up and fight for the vital proactive care he needed to live the best quality of life possible. Not only did I fight, but I came armed with every bit of information I could find on the condition and used it as ammunition against the all-knowing doctors who would imply that I was in obvious denial or battling the inevitable. However, since Brayden continued to live and thrive, the battle continued and the journey was openly shared with all who would listen, in hopes of helping others who were on the same or similar journey. A quote describing his ability to defy all odds against him, living and thriving despite his prognosis, became a personal motto for him. “…does not know that… so goes on anyway.”

On June 14, 2011, the Brayden Alexander Global Foundation for Hydranencephaly was officially incorporated as a nonprofit organization, later doing business simply as Global Hydranencephaly Foundation (GHF). That early notion to “believe in the impossibilities” became our motto “Believe in the Impossible!” and that Mary Kay Ash quote about the bumblebees became our mascot, Bennett (means blessed little one) Buzz-Bee, and that bee label for our amazing little people who follow their own set of rules. The mission was our first step along the way, and it still serves as our mission over two years later as we continue to reach more families and change more lives across the globe.

We celebrated our 2 year anniversary with the kick-off of the first ever Hydranencephaly Conference presented by GHF in Dallas, TX the weekend of June 14-16, 2013. The event brought together several children ranging in age from 2 months to 12 years, as well as the families of children who were not able to travel or had gained their little angel wings. The event featured inspirational speakers Clay Dyer and Lisa Walker, as well as our very own Janice Johnson, the mother of our oldest known individual with hydranencephaly, Travis, who is 32 years old. Complete with raffle items, door prizes, vendors, crafts, a Fathers Day Tribute, and memorial balloon release in honor of all our little bee-angels; the event proved to be a huge success!

Along with this celebration in honor of our second year of completed, incorporated success and progress, and in remembrance of the birth month of the little man who inspired it all into existence simply by living for 4 years, 4 months, and 14.5 days (joining his angel buddies on November 15, 2012), we began the recognition of the month of June as Hydranencephaly Awareness Month. While we failed our first attempt at gaining signatures to present a formal petition to the Obama administration requesting declaration of June as hydranencephaly awareness month, we will take the lead of our little people and not let that deter us from achieving our ultimate goal. Along with that, we will continue on our mission of whatever means necessary and possible to ensure that every child given this diagnosis has the opportunity to live the best quality of life they deserve.

If you would like to read Brayden’s journey with hydranencephaly, it is chronicled in near entirety at his CaringBridge site.  And in recognition of Hydranencephaly Awareness Month, learn more about the condition, our families, and especially the children we are so passionately advocating and fighting for by finding us in a multitude of places around the web. Start at our website and follow the links to Facebook, YouTube, Blogger, Twitter, Pinterest, and more from there: http://www.hydranencephalyfoundation.org

Alicia Harper is the Founder and President of Brayden Alexander Global Foundation for Hydranencephaly, dba Global Hydranencephaly Foundation; as well as mother to angel Brayden and his two older sisters, and a Navy wife who stays active in her community, led by her passion of helping individuals live the best quality of life possible, through volunteer work and many aspects of special needs advocacy. You can reach her directly via email: President@HydranencephalyFoundation.org