Day 14 of our #30daystoBEEhydranencephalyaware series - it's our BIRTHDAY!
On this day, in 2011, Brayden Alexander Global Foundation for Hydranencephaly became incorporated as a nonprofit organization - it was later that year that we adopted the business name of Global Hydranencephaly Foundation (the condition itself is a mouthful!). This is reason #2 why we recognize June, even if unofficially, as our awareness month!
The timing was not entirely planned, but could not have been more perfect since just three years prior, in 2008, I began this journey of unknowns. A new life challenge facing the rare neurological condition of hydranencephaly for the first time.
Hydranencephaly occurs in an estimated 1 in 10,000 baby’s global-wide with a much lower occurrence in the US of only an estimated 1 baby out of 250,000 pregnancies. It presents itself as the absence of the cerebral hemispheres, the “gray matter” of the brain, to varying degrees. If diagnosis is made during pregnancy, termination of the pregnancy is recommended to parents. In cases that the child is diagnosed at birth or in infancy, medical professionals continue to paint a grim prognosis. Medical text defines the condition as terminal; or even worse, not compatible with life.
That June 30th, Brayden Alexander made his unexpected grand debut in to the world via emergency cesarean at Columbia Regional Medical Center in Missouri. Randall Floyd, MD was a welcomed stranger, the on-call that evening for the doctor I had grown to dread in the months before delivery; one of the very few kind, strong-hearted persons I can recall from my post-delivery fog.
Even before Brayden breathed in his first lungful of life outside the womb, the odds were stacked high against him. Courtesy of a hazy ultrasound image, the obstetrician I had only recently begun seeing for unrelated health concerns, not only gave the news that I was pregnant but immediately directed our case to be overseen by the doctors at The Missouri Center for Maternal/Fetal Medicine and Ultrasound in Columbia. Two weeks later, in March, a more distinct ultrasound image was captured and concern only intensified from there. A severe brain abnormality was detected; and although they could not give it a definitive name, or even a clear-cut description, they were confident that his prognosis was extremely dismal at best: the baby would not survive to term and in the extraordinary odds that he did, he would grow his angel wings very soon after delivery.
The rest of the pregnancy was not your typical joy-filled monthly
visits to track growth with our new perinatal specialist Dr. Hung Winn, but rather dreaded weekly evaluations to determine if he was “still alive” since we had opted to not take the advice of proceeding with medically induced termination of pregnancy. In fact, that decision was never truly accepted as such and left on the table for discussion at each appointment throughout the duration of my pregnancy. It was a rare occasion for me to go to or leave an appointment without tears streaming down my face.
That phrase “medically induced termination of pregnancy”, I later discovered, is the medical community’s recommendation to families who are carrying a child whose life may be less than society’s perception of perfect. It is specifically reserved for those babies who have been given a terminal diagnosis, a diagnosis deemed “incompatible with life.” That life prediction having been made with a glance in to the future via a semi-clear ultrasound image by a medical professional who briefly studied the given diagnosis in medical school, having to refer to textbooks or even the World Wide Web for details, but having had never met a child with said diagnosis.
Flash forward again to the first mention of “hydranencephaly” when doctors gathered in my hospital room to deliver the news:
“We sent your baby for an MRI this morning. He obviously has severe hydrocephalus, which we knew from the enlarged size of his head, but his condition is much worse than just fluid around his brain. Your baby is actually missing most of his brain, surviving on his brain stem alone.”
They never even said the name of his diagnosis, hydranencephaly. Years after spelling it out, arguing its clear difference from hydrocephalus or anencephaly, and saying it syllable by syllable to several medical professionals, I now have to wonder if they were not even sure how to pronounce this new word that would define our lives from that moment on.
Despite the limited expectations we had been given for Brayden’s life, he was defying those things that were said to be medically “impossible” by the people with professional degrees. He was eating and breathing independently, sleeping comfortably but alert and aware when he wasn’t, and most importantly LIVING. Yet the list of ways he was currently or would eventually be suffering, continued to grow: uncontrollable seizures, muscle spasms, pain, starvation, headaches, organ failure, respiratory complications, and on and on. He couldn’t see, couldn’t hear, and was surviving in a persistent vegetative state with no awareness of the environment around him. All of which he showed us was wrong.
Moving forward beyond the countless sleepless nights filled with internet searches, several unintentional attacks on my heart, the sifting through support groups that were not always supportive, the ridiculous battles to have him treated for common colds or seen for basic well-baby checks and the endless fear of the unknowns; to arrive at a moment when I realized that Brayden had other plans in sight. Incredibly, his plans were not dictated by a medical textbook and instead guided by an instinctual determination to live life to the fullest. And that list of “impossibles” that we were given in the beginning was quickly deemed obsolete. That notion never took shape again, other than to serve as inspiration for our mantra, “Believe in the Impossible!”
As Brayden’s sister said, “we loved him to life!”
We may have loved him to life, but he did far more for everyone who was in his life than anyone else for him. A blue-spectacled, smiley-faced little man ignited this mission without having uttered a speech or hosted a rally. Prompted by the determination he instilled in me, the idea of creating an organization that could have a greater impact on raising awareness of the possibilities that I now knew existed for children given a diagnosis of hydranencephaly. That idea only grew after I jumped in, blindfolded and head first, with an invitation I extended to a handful of other mothers on this journey to join me in making that idea a reality. That big, bright light that Brayden shined on the world ultimately led the way in changing how the face of hydranencephaly is perceived across the web and in communities across the globe.
However, achieving that reality was not always easy; or was it ever, as a matter of fact. Learning along the way left for several discouraging moments and the daunting obstacles placed in our path were intimidating at times. Despite those challenges, we achieved our 501(c)(3) nonprofit tax exempt status making us an official not-for-profit entity.
Those 21-months of waiting proved far more rewarding than the difficulties faced. We watched people connect through our online support group, as strangers grew to become family. We watched children who had been given up on by medical professionals, defy those odds and have a chance at the quality of life they deserve. We geared fearful parents with the information and resources necessary to make them vicious advocates for their children. And most importantly, as a united family we have successfully made huge strides in raising awareness for the possibilities that exist for children diagnosed with hydranencephaly. Our families are no longer “families” plural, but singular as one family; a family that celebrates milestones, conquers challenges, faces obstacles, and supports one another from diagnosis to loss and forever thereafter.
GHF is working towards overcoming challenges faced in an attempt to meet the needs of our global families: obtaining quality healthcare, covering shipping costs of medical necessities and equipment that has been graciously donated, collecting necessary equipment to grant to families in need, and efficiently educating families to advocate for their child to live the best quality of life possible. Since obtaining our 501(c)(3), we finally have the opportunity to take our mission to a grander level by receiving funding and grant money; which we have dived in to wholeheartedly.
If you’d like to learn more about our mission, vision, and the families we represent; start by visiting our website at www.hydranencephalyfoundation.org. From there, you can follow links to explore our YouTube channel, follow us on Twitter and Facebook and connect on various other platforms as we reach out in every way to reach more families. If you’d like to help with our mission, or your life has been touched by a diagnosis of hydranencephaly, you may contact me directly by email to President@HydranencephalyFoundation.org.