Monday, June 15, 2015

30 Days to BEE Hydranencephaly Aware - Say CHEESE!





















Day 15 of our #30daystoBEEhydranencephalyaware series - in honor of "Smile Power" day, it's all about the smiles.

Now why would we want to focus on those - besides the fact that images of cute kids with a smile on their face is just adorable??

One of the medically subjected misconceptions that come delivered to parents along with diagnosis, is that their child will never show any emotion - never smile, never laugh and never cry or even show any sign of anger or affection. 


The reality is, children with hydranencephaly are so full of emotion - it's how they communicate. And while not every child will flash their pearly whites for the world to see, a majority of them do and they do it often!!

So, let's see those smiles - we will be sharing on our Facebook page throughout the day! Happy "Smile Power Day". 

Sunday, June 14, 2015

30 Days to BEE Hydranencephaly Aware - Happy Birthday!





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.



Saturday, June 13, 2015

30 Days to BEE Hydranencephaly Aware - The Big Event

Day 13 in our #30daystoBEEhydranencephalyaware series - a reminder of our big global-wide event, coming up in just 2 short weeks (it has really snuck up on me this year!!)

Registration has come and gone - you have your awareness bracelets, you have your tshirts (if you do not, please contact us immediately because you should have them), and you likely have a plan for the weekend.

Those who have registered to participate - I have a huge reminder for you!!

You have also received your sponsorship forms (which are due back to me by July 5, at the latest - postmarked by July 1st). Those sponsorship forms are what is going to help you win one of our amazing prize packages - or if you have a bee-buddy on wheels, decorating their wheelchair for your community awareness event will help you snag a prize.

About those prize packages:

Most Sponsors Collected - if you have the most amount of sponsors collected, you will receive a prize package that includes the following:
 
- an Origami Owl Living Locket bracelet with Swarovski Crystals ($59 value)

- a $50 CafePress gift card to our marketplace

- a small Oh Snap Bin from Thirty One Gifts ($15 value)




Most Money Raised - if you raise the most money at your event, in support of GHF, you will win:

- an iPad Mini (value $250)

- an Essential Storage Tote from Thirty One Gifts ($28 value)




And our final prize package category is the most fun - so it scores
you the most fun prizes. For Best Wheelchair Decorations, you will win:

- a wheelchair umbrella (a $57 value)

- a Sprinkle & Splash Water Mat (a $20 value)

- a massage mat for chair of your choice (a $150 value)

- a fiber optic lamp (an $8 value)

- a bumblebee nighlight (a $10 value)

- a switch activated fan with lights, to keep cool and enjoy some sensory/cause & effect play

- all in a large Utility Tote from Thirty One Gifts

Friday, June 12, 2015

30 Days to BEE Hydranencephaly Aware - Superman











Day 12 of our #30daystoBEEhydranencephalyaware series - we get to celebrate our own group of little superheroes: Happy Superman Day

"Far from fragile... how about medically "un"-fragile, better yet how about just plain super heroism?" ~Ali Harper (that's me)

I cannot for the life of me find where I originally wrote those words, but my heart still feels the same.

Hydranencephalic children are considered "Medically Fragile" - a term I've grown to despise. Sure, they require an enormous amount of medical attention. They are regularly poked and prodded, manipulated and stretched in therapies, sliced and diced in surgeries, and possibly manage through less than friendly side effects from medications they're prescribed - all in order to live the "best quality of life possible"

That there seems ironic.

Those who are otherwise healthy, all of you reading this, would be miserable under the circumstances these children live under. The pain, the discomfort, the generally annoying disruptions to their days... 

So instead of medically fragile - we will just call them superheroes: Superman, Iron Man, Captain America, Batman... the list could go on forever.
"In modern popular fiction, a superhero is a type of heroic character possessing extraordinary talents, supernatural phenomena, or superhuman powers and is dedicated to a moral goal or protecting the public." ~Wikipedia

Thursday, June 11, 2015

30 Days to BEE Hydranencephaly Aware: Stillbirths, Statistics, and Surveys


Day 11 of our #30daystoBEEhydranencephalyaware series and we are going back to the topic of statistics:

Those statistics we mentioned at the beginning of the month – check it out HERE - they bother me, nearly every day. They’re so important to the medical community in order to gain the attention that we need to change the “doom and gloom” prognosis delivered to families, but we struggle to get the information we need to create a new set of statistics. 


We created our Hydranencephaly Family History & Medical Survey and have requested our families to fill out this information and provide copies of MRI images in order to collect the information necessary to create our own set of statistics to present to the medical community - currently we have received only 4 in return. 

There are some staggering ones available that DO get attention – and at least a small percentage of this specific statistic likely includes children with hydranencephaly, who were never diagnosed: “

"...Stillbirth seems inconceivable in the 21st century. But, it turns out, one in 160 American pregnancies ends in stillbirth. Each year, more than 26,000 babies die in utero, in what is supposed to be the safest place. That’s 2,000 more than infants who die in their first year of life. /This is a public health crisis,' said Lindsey Wimmer, whose son, Garrett, was stillborn in 2004. 'Twenty-six-thousand individuals dying in the United States is notable, of anything.' Yet stillbirth is almost invisible..." 

Like the condition of hydranencephaly, stillbirths are not researched - the American Congress of Obstetricians and Gynecologists, which sets standards for practice, doesn’t mandate it. Health insurance generally doesn’t pay for it. (from this Washington Post article)

A new federal law might help. The Sudden Unexpected Death Data Enhancement and Awareness Act requires states to collect data on stillbirth and sudden unexplained child deaths, as well as to better educate the public. But the law has no money attached, so it may not do much to support the research necessary to prevent these deaths from happening.

Until then - we need to work to gather the information necessary from the families we are in contact with. If you have a child in your life, whether here to hold in your arms or having since passed, we need your help!

This is from the intro letter to our family survey, which is available via email, postal mail, or by download on our website and in our family resource networks on Facebook:

Dear Parent or Caregiver,

First, I’d like to take the opportunity to thank you for sharing your bee with me. Whether your child continues to grow with you here or has since grown their angel wings to continue on their journey from afar, their life is making a difference in the world. 

Since 2011, GHF has been on a mission to change the medically subjected misconceptions that exist surrounding a diagnosis of hydranencephaly. In addition, we have found that accuracy in definition and diagnosis details are essential in accomplishing this. While we have made considerable progress across the web in the past 3 years, our greatest challenge continues to be the medical community --- the very people that we rely on to help these children thrive and live the best quality of life possible.

 This has become even more of a greater obstacle as I have found myself challenged head-on by individuals in the medical community for the information our organization presents to families: from the definition I authored on Wikipedia, the resources and information GHF has made available to families via the website, and the personal contacts with various care providers I have made while advocating for families on a personal level. 

In order to tackle this challenge, I am embarking on a project to gather greater diagnostics and demographic details from as many families as possible. The information you share will be anonymously compiled in to the “data in numbers” that medical professionals and research specialists want to first see in order to pay attention to the message we are relaying.  The more detail you share, the more effective the project will be. 

When completing this survey, please remember the following: 

All information collected by GHF is treated with the utmost concern for the privacy of our families that provide it. I am the only person that will see the records that you share in their entirety and I will ensure that your identity will remain anonymous when sharing those records and bits of information in our awareness and advocacy efforts.

I have been trained by the United States Navy and Naval Criminal Investigative Service (NCIS) in the importance of confidentiality of information and how to maintain it in social media, the World Wide Web, and in community. Legally, GHF is not permitted to share any data collected with anyone other than those persons or organizations disclosed at time of data collection. This means that your information will never be release to anyone, regardless of the care they say they will practice in maintaining confidentiality. At no time will any names, addresses, or any other personalized information that could directly identify an individual be made available to anyone without your expressed written permission.

Please complete the attached survey to the best of your knowledge. Do not share details unless you are sure of the accuracy of those details. Please be as thorough as you can in detailing the requested information. Feel free to attach additional records or pages to complete the survey; then fill in the number of attached pages on the line at the end. In addition, please include any and all brain imagery scans that you are able to share. You can contact the imaging center for forms to request these on disc or hard copies. 



This project is SO very important.

Tuesday, June 9, 2015

30 Days to BEE Hydranencephaly Aware - How?

Day 9 of the #30daystoBEEhydranencephalyaware is tackling yet another huge misconception - the "how".

How does this happen?

How does a child become hydrancephalic?

Hydranencephaly generally, in most cases, has no identifiable cause. Though there are several possibilities – there is often a huge misconception that drug use or lack of prenatal care causes severe developmental disabilities such as hydranencephaly… not always the case.

Hydranencephaly is a cephalic condition - there are several and there are some areas of crossover in diagnosing. For example, hydranencephaly is a severe form of porencephaly and the combination of two other cephalic conditions: hydrocephalus and anencephaly. You can read about all of this in another post: Thankful Thursday: Passion

But again, how does this happen?

Contrary to popular belief and misinformation given by medical professionals - this isn't caused by the underdevelopment of the brain. In actuality, the damage that causes hydranencephaly happens AFTER the brain has developed... after the first trimester of pregnancy and even in to infancy.

From Wikipedia (I only reference this definition because I wrote it):

Hydranencephaly is an extreme form of porencephaly, which is characterized by a cyst or cavity in the cerebral hemispheres.

Although the exact cause of hydranencephaly remains undetermined in most cases, the most likely general cause is by vascular insult such as stroke or injury, intrauterine infections, or traumatic disorders after the first trimester of pregnancy. In a number of cases where intrauterine infection was determined the causing factor, most involved toxoplasmosis and viral infections such as enterovirus, adenovirus, parvovirus, cytomegalic, herpes simplex, Epstein-Barr, and syncytial viruses. Another cause factor is determined to be monochorionic twin pregnancies, involving the death of one twin in the second trimester, which in turn causes vascular exchange to the living twin through placental circulation through twin-to-twin transfusion, causing hydranencephaly in the surviving fetus.[6] One medical journal reports hydranencephaly as an autosomal inherited disorder with an unknown mode of transmission, where an unknown blockage of the carotid artery where it enters the cranium causes obstruction and damage to the cerebral cortex.[3]

As a recessive genetic condition, both parents must carry the asymptomatic gene and pass it along to their child, a chance of 25 percent. Despite determination of cause, hydranencephaly inflicts both males and females in equal numbers.

Though hydranencephaly is typically a congenital disorder, it can occur as a postnatal diagnosis in the aftermath of meningitis, intracerebral infarction, and ischemia (stroke), or other traumatic brain injury.
So to make that a simple explanation - "something" generally unidentifiable happens to cause traumatic brain injury to a baby after it's brain has developed. As development continues, that severely damaged brain is essentially reabsorbed by the body - the tissue is no longer there. 



Share this graphic around your social media sites to raise awareness of the causes of hydranencephaly. If you have additional questions, please feel free to contact us anytime!30

Monday, June 8, 2015

30 Days to Bee Hydranencephaly Aware: Besties

Day 8 in the #30daystoBEEhydranencephalyaware series:

Happy National Best Friends Day... last year we shared photos of some of our kids loving life together. You can check that post out here ~ it's incredible how our family-to-family resource network (aka FAMILY) continues to grow in size and quality of bond.

This year in honor of National Best Friends Day, I’d love to share with you how our families have connected to become a huge source of support for one another – there is an unbreakable bond built between the parents, as well as the children who have been given the opportunity to meet. Global Hydranencephaly Foundation created and maintains the largest, most active, online support network for families who are facing diagnosis of hydranencephaly for a child in their life. If you have a child with this diagnosis, or if your child is undiagnosed but you suspect they do have this condition, please contact us directly at President@HydranencephalyFoundation.org or via Facebook.

Why is this network, these friends from afar and brothers/sisters by circumstance, so important to one another?

My journey began in 2008 - I wrote the following in 2011, and pieces of it came from the earliest days of our journey. Support is always important. TRUE, unwavering support from others who are on that same journey as yourself... when you don't have to explain it, they just get it.


Flashback Weekend, originally published on July 16, 2011

There is one day in particular that I wished I myself could build something to provide the support and guidance that I had thought I found online through the Rays of Sunshine group. This was the day when I found myself attacked for my personal decisions to avoid pharmaceutical and medical interventions for seizures and feeding issues. I couldn't believe how heartbroken I was to receive these messages, the criticism, the lack of support... how could a support group that I had found such solace and hope in, turn their back on me and be so horribly critical of my personal decisions as a parent? To call me selfish for not getting a feeding tube, to tell me I'm killing my son because I want to avoid pharmaceutical interventions as much as possible... I can still see those words that I read on the screen, I forgave but never forgot.

From CaringBridge on December 15, 2008; Brayden was a mere 5 1/2 months old then and I remember crying my eyes out over people I had not, nor likely never would meet:

"More and more I feel so very fortunate for the hope that I've been given by other parents in online support groups...it's the best feeling in the world to be able to interact with other parents facing the same obstacles I am, or will some day. But at the same time, in those same groups...or one in particular, I'm filled with disgust at being reminded how truly heinous some people on this planet can be. It really is just sad that people take such a tragic topic in people's lives and turn it into more torment, people that make it seem as if you can look to them for help and guidance in difficult times, when in all actuality they are there for all the wrong reasons. Whatever those reasons are, it's obviously not to help people as they let you believe. I guess that the world has to be made up of all sorts of people, good and bad...it's just disheartening that the people you think are the good ones, turn out to be the bad! It would be wonderful if someone would just put a big neon sign over those people, to warn of "impending danger" to your emotions!"

So, I started my own support group - on Facebook: GHF Family-to-Family Resource Network

And our family is so amazing that we have received the 2015 WEGO Health Activist Award for Best in Show: Community or Forum and several other nominations from WEGO Health and also About.com over the years.

You know the saying, something along the lines of:


"Family is not always blood. Family is not always those people in your life who you have known the longest. Sometimes it is those people who stick by you and support you, through the ups and downs, and never let you go far from their heart."

Ok, I embellished that to my own liking... but you get the drift and I'm sure you've heard variations of the sentiment yourself.

I've said it several times here, I'll say it again - I have immense amounts of gratitude for my hydran-family, our network of families who come together from afar in an online support group on Facebook. Some of those families have met others, I've met a few. MOST of those families have never met another family there. 

Yet, those families hold each and every one of the other families close in their hearts at all times. I know for myself, I think about the ill children constantly, those who have grown their angel wings forever hold a place in my heart, and those who accomplish great things... I celebrate for them in a big way, just as if it were my own child! My daughters know nearly every child by name when they see their pictures. These families are a part of my life, my heart.


While the circumstances that brought us all together are far less than ideal, I feel that we all agree that we could not have found a greater bunch of parents to share in this journey with. 



besties = I found this post and thought it did a great job giving definition to the term:
12 Qualities the Person You Call Your Bestie Should Have, from Elite Daily with my own embellishments to make it more hydran-journey appropriate.


Friendship is an interesting kind of love. There’s no contract legally binding you two together, there’s no unspoken rule about loving each other unconditionally, and there’s no real binding commitment to the opposite person other than what you are willing to put in to the relationship.

But maybe these are the reasons why our friendships are so valuable. The option is always there to back out at any time, and yet, with the really, really authentic ones, we never do.

Because at the end of the day — after the breakups and divorces and estrangements — we choose the companions we want in our lives, and they are the ones worth sticking around for.

And if we’re really lucky, they possess these qualities:

1. No judgment

the advice is always there - take it or leave it - but we won't judge the decision you make when it is what you believe to be the best choice for you and your family
2. Genuine

true-blue and committed to one another; the kind of friends that will attack an online troller who shares a hate-filled rant about one of our children - or supports your whole family in whatever challenges faced. We have one another's back.

It's never "work" to maintain the bond - it's just there.
3. Acceptance

no doubt about it - we are all in this together and the arms are open to everyone who joins us on this journey

4. Trustworthy

what is shared in the group, stays in the group - regardless of the good, the bad, or the everything in between...

5. Respect

we won't always agree with one another (what family does?) but we will always welcome and support your opinion - appreciation of the differences are part of the journey

6. Forgiveness

mistakes are made and passions run high - sometimes stuff just "comes out" but we all forgive, understand, and support in the end

7. Support

we are all here because we choose to be here - to share in the journey together, regardless of what chapter we may be on. Whatever the support you are seeking - during good times or bad - you have it.

8. Dependable

24/7 there is someone awake and available to offer guidance, advice, or shoot up a quick prayer

9. Thoughtful

remembering special, or traumatic, days in the lives of one another is important - sometimes remembering to NOT remember those days, or remember them silently, are valued as well

10. Listener

sharing a rant about your frustrations and fears is sometimes all you need to get through the next moment of your journey - we have that here

11. Shares your humor

not everyone can experience an epic blow-out in the worst way and laugh about it

12. Loves you for you

all walks of life, varying cultures and countries - you are loved beyond measure


Sunday, June 7, 2015

30 Days to BEE Hydranencephaly Aware: So Simple, Community Buzz















Day 7 in our #30DaystoBEEhydranencephalyaware series ~ it's so simple to help us on our mission!

"Raising awareness of hydranencephaly in your own community can be as simple as purchasing and wearing a t-shirt, or maybe even a bracelet. Not only does it spark inquiries from those who see it, but it supports us on our mission as well! CafePress is a great place to start, but there are dozens of other opportunities to bring awareness to your own communities. We will share other ideas on Sundays in our 'Community Buzz' series"

It truly is as simple as wearing a tshirt to the grocery store, or adding one of our awareness bracelets to your wrist, or clicking "share" as you're scrolling through your Facebook newsfeed. This is how YOU can help US reach more families across the globe.

Here is more about the awareness merchandise we have available:
Our CafePress market is stocked full of awareness designs on a variety of items: clothing for babies to adults, buttons and signs, cups and lunchboxes, bags and purses, even homegoods such as shower curtains and pillows... you name it, it's likely there! And the best part about it is if you want a custom design, let us know and we can make it happen! Check out the shop here
        



CafePress is a great place to find t-shirts to use in our TieDye Challenge happening all month long! You can read the details here: Tie Dye for Hydranencephaly Awareness Campaign

In addition, we also have wall decals available that are a perfect addition to your home or your car! There are two options to choose from, the Mary Kay Ash quote or Bennett Buzz-Bee with "Believe in the Impossible!"

You can get those by visiting our merchandise page here


And finally, we have a few "Let's Roll!" Hydranencephaly Awareness Walk/Run event tshirts available - our 2014 event shirts are available at a crazy low price and we now have a small selection of this year's shirts available as well! You can also purchase those at our merchandise page
While there, you can also pick up a few silicone awareness bracelets.

We are also looking for other fundraising and awareness building opportunities, so anytime you have time, talent, or ideas to share - please contact us at President@HydranencephalyFoundation.org 

Saturday, June 6, 2015

30 Days to BEE Hydranencephaly Aware: Born Without A Brain


Day 6 in the #30DaystoBEEhydranencephalyaware series here at Journey of the Bees = tackling a huge misconception, again.

"Upon diagnosis, doctors will often state that a child with hydranencephaly 'doesn’t have a brain'. This isn’t an entirely true statement – most generally the cerebral hemispheres are the only areas affected, but in more severe cases other areas can present as damaged or absent as well."

"...does not have a brain" - shouldn't that mean that a child cannot survive?

Here is exactly what a diagnosis of hydranencephaly truly means - I'll try to avoid medical jargon.

Here is the brain:
                                      


The curly, wormy looking areas (cortex) are missing to a large degree in a child with hydranencephaly - both hemispheres are most often affected, but in very rare occurrences only one side is affected (hemi-hydranencephaly).

To give you an even better visual - here are brain images side by side. These are my own son, Brayden Alexander's, brain scans from diagnosis on July 1, 2008 in comparison to a typically developing brain scan. 

Healthy Brain MRI (left)        Brayden's Brain MRI with hydranencephaly (right): Top View


That gray stuff on Brayden's MRI, that is cerebrospinal fluid... that is all that is there! For one reason or another, most of his brain was destroyed in utero and replaced with sac-like areas filled with cerebrospinal fluid. There is no winding tangle of gray matter, the typical brain image you envision when you think about a brain.

For a better view, here are comparison MRI's from the side view:




Brayden's Brain MRI with hydranencephaly






Healthy Brain MRI



Clearly different ... As you can barely see, Brayden has a VERY thin layer of cortical mantle. The cerebellum is there, but a bit small... but his readings state that it does have normal configuration and above average signal intensity. His brainstem is completely normal in size and signal... and that is about all that he has as far as the major portions of the brain go.

One thing we need doctors to realize is that brain imaging is great, but it does not paint an accurate picture of the possibilities that exist for the child - not the life they're capable of living, or the life that they are living. There are so many active components of the brain and we believe in the power of neuroplasticity, the brain's ability to "rewire" itself!

Here are some links to other blogposts on this topic:

Bee-lieve Campaign
Brain Awareness Week: Believe in the Impossible!
Vegetative State of Mind


Friday, June 5, 2015

The Real Buzz - Abigail


From auntie to bee-beauty Abigail, who just celebrated one whole year of AMAZING:

"They said she wouldn't make it thru delivery.... They said she wouldn't make it an hour, a day, a week, a month, a year. Well 1 year ago today i was blessed to be a part of my niece Abigail's birth. It was one of the most emotional days of my life. One I shared in with my brother Jake Ball and my sister in law Myrna Martinez. It was a journey with tears, and worry, along with hope, prayers and the comfort of each other. A journey we are still traveling together 1 year later with our precious Bee Abigail. She has taught us to Believe in the Impossible!"

The Real Buzz - Lil' Pete


From mommy to our bee-buddy Lil' Pete:


"Hydranencephaly awareness is very important to us because it allows others to learn about this rare disease and it also gives hope to families. My lil Pete was diagnosed in utero and they gave me no hope they said he would die as soon as he was born, they even recommended for me to terminate my pregnancy, but I kept my faith and went through with it and had my baby. Everyone was very negative they even neglected him, sent him home with hospice so he could die in peace they said! But little did they know this lil superman was here to prove everyone wrong! Myself and his father have been extremely pushy with his care, and look at him now about to turn 4 sitting up trying his best to hold his head on his own! Believe in the impossible!!!"

Thursday, June 4, 2015

30 Days to Be Hydranencephaly Aware: The Audacity to Hope


Day 4 of our #30DaystoBEEhydranencephalyaware focuses on the importance of hope:









"In honor of 'Audacity to Hope Day' – a reminder that hope, in addition to unwavering love, conquers all. Children who are given a diagnosis of hydranencephaly and given up on far too soon, do not live the quality of life that children who are plugged in to our family resource network or another means of proactive, positive support do. Doctors who tell parents that there is no hope for a quality of life worth living are essentially killing these children before they’re given a chance at the life they deserve – without hope, there is nothing."



From a blog post written prior to November 2011, when it was shared right here on this very blog as a "Flashback Friday post, comes the following reminder on the importance of hope on this journey. Please check out the full posting by clicking HERE - it will tug at your heart strings and really bring you to a greater level of awareness in to the lives these families are living!

"...blessed with the opportunity to be this little miracles mommy during his time on Earth. For the lessons he is teaching his sisters, his daddy, myself, and every other family, friend, or stranger he himself and/or his story touches... that hope lives on, and there is never a good time to give up on that!!" 

Wednesday, June 3, 2015

The Real Buzz - Abrienne


From grandmother to sweet-bee Abrienne:

"June is hydranencephaly awareness month and awareness is important to me because it gave us hope. I now believe in the impossible thanks to the Global Hydranencephaly Foundation and to Abrienne who has shown us herself that anything is possible, but we had very little hope for anything when she was first diagnosed and we thought she wouldn't even make it out of the hospital and now 17 months later we see this beautiful smile day after day! Awareness is important to me now because I don't want to see other families suffer feeling alone and devastated like we did. I wish families knew about our hydranencephaly family at the time of diagnosis."

The Real Buzz - Alex


From mommy to our bee-buddy, Alex:

"When my son was born so many doctors told us that his life will be very short even after Alex was 3 days old and had his first surgery, they told us to just take him home and enjoy him because he probably won't make it past a couple of weeks or months. But he is still here with us even after his 2nd surgery my Alex is stronger then ever. Feel free to share! SPREAD AWARENESS!"


The Real Buzz - Braylee


From mommy to bee-beauty Braylee:
"June is Hydranencephaly awareness month and it is very very important to us. When we were given Braylee's prognosis it was absolutely heartbreaking. We were left with no hope. All we were told were the bad things. Her neurologist never encouraged put her in therapy or have a shunt placed, it was something I had to ask for on my own. Unfortunately a lot of doctors have the "why even try" attitude with babies like Braylee. Thank God prayers were answered and Braylee fought through a very very difficult first year of life and she has completely changed her neurologist's and neurosurgeon's points of view. All of her doctors and nurses have been amazing throughout this journey and we've all learned things about the diagnosis together. I've also taken her to specialists who had no idea what her diagnosis meant bc it is so rare. We try to spread awareness to them in a positive way and to our community as much as possible! Braylee is truly amazing and continues to defy odds every single day! She has not only taught our family a lot but our community too. If it weren't for everyone's prayers for her I don't think she would be where she is today. I give all the glory to God! #prayforbraylee"

30 Days to Bee Hydranencephaly Aware: "Love Them to Life"

In honor of “Love Conquers All Day” – sharing a phrase my own daughter, Brayden’s sister, once said. Having only been 3-7 years old during his lifetime, she is wise beyond her years.

“We loved him to life.” 


We made the decision to be open and honest with Brayden’s sisters about his prognosis; and while heavily criticized for that decision, we wouldn’t have had it any other way.

We shared during my pregnancy that their little brother may never come home, but we could love him anyways - that we should love him extra much.

We shared after he was born that he could be gone any moment - we cried together with fear of the many unknowns this journey had presented us with.

But eventually we grew to embrace the moments we shared and celebrate our time with him - by making memories and loving every second of it.

We never knew how much time we would have and it wasn't until we stopped worrying over it that we truly enjoyed our time...

If you are facing diagnosis of hydranencephaly for a child in your life, please do not let the medical community scare you in to a dark place where you are unable to enjoy your child's life. 

Tuesday, June 2, 2015

The Real Buzz - Jeremy

From bee-keeper to our buddy, Jeremy:


"These are some of the faces of the children we are raising awareness for this June. These are the faces that the doctors give no hope. Hydranencephaly is so rare some doctors will never see a patient in their entire careers. We need to change this, we need to make doctors see that Hydranencephaly in their text books is not the faces we love. Yes our children have many medical concerns. Yes our children may not live as long as the average child. But some do. Hope is all a parent needs. We want the medical community to tell us the actual facts. The facts not in their text but the ones known by the community of parents that have devoted their lives and hearts to their children. They are truly the only ones that know these facts. They are the ones in these children's daily lives. Our children do smile & laugh. They play & learn. They have friends, family and they know who they are. Please share with everyone you know Hydranencephaly Awareness this month. Help the medical field and worldwide community know about this very rare condition that my son Jeremy was born with. Knowledge is power for our children and their families"

And of course, meet Jeremy - one of the faces of hydranencephaly: 





30 Days to Bee Hydranencephaly Aware: Outlook = Poor






Day two of #30DaystoBEEhydranencephalyaware tackles one of the greatest misconceptions - that is delivered by unknowing medical professionals who often "google" the condition since they have such little first-hand knowledge of hydranencephaly. 

"The medical text prognosis for children with hydranencephaly, which is often given to families upon diagnosis, states: '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.' The reality is reversed, that rarely does a child with this diagnosis die within the first year.

GHF is struggling to have the formal medical diagnosis altered to reflect the reality, but we have successfully changed the definition across the web in hopes of families facing the decision to give up on their child far too soon.

You can read the definition as we have reworded it in several places around the web and even in print publications, thanks to some amazing opportunities we have been presented with to author updates to various publications that recognize the outdated medical text. A couple of those places:

Pediatric Brain Foundation 
Disabled World 

The full definition, as we have submitted, has been challenged more times than I can count by medical professionals who argue that our definition is far too optimistic to be the reality of the condition. What are your thoughts?


Hydranencephaly, synonym hydroanencephaly (NORD, 2007). Hydranencephaly is a rare congenital abnormality characterized by the absence and replacement of the cerebral hemispheres with cerebrospinal fluid. It was first described by Cruveilher (1892) as “Anencephalie hydrocephalique” or “Hydroanencephalie”1. Crome and Sylvester then reviewed the disease and defined it as a congenital condition2. It is an extremely rare and unique abnormality occurring in less than 1 per 10,000 births worldwide3. It is also said to be present in 0.2% of infant autopsies, and approximately 1% of babies diagnosed clinically as hydrocephalus4. It is critical to differentiate between hydranencephaly and extreme hydrocephalus as the latter carries a potentially better prognosis5.

Hydranencephaly, synonym hydroanencephaly (NORD, 2007), is one of the various cephalic classification types of disorders. These disorders are congenital conditions that derive from either damage to, or abnormal development of, the fetal nervous system in the earliest stages of development in utero. Cephalic is the medical term for “head” or “head end of body.” These conditions do not have any definitive identifiable cause factor; instead generally attributed to a variety of hereditary or genetic conditions, but also by environmental factors such as maternal infection, pharmaceutical intake, or even exposure to high levels of radiation (NINDS, 2007). This condition possesses isolated occurrences, affecting less than 1 in 10,000 births worldwide (Kurtz & Johnson, 1999) and officially classifying hydranencephaly as a rare disorder by affecting fewer than 1 in 200,000 in the United States (Rare, 2011). Even rarer are cases of hemihydranencephaly, in which the effects of damage are unilateral and existing only on one hemisphere of the brain (Dubey, Gobinathan, et.al, 2002).

Many children live for an extended period prior to diagnosis due to no obvious symptomatic presentation at birth. Though hydranencephaly is typically a congenital disorder, it can occur as a postnatal diagnosis in the aftermath of meningitis, intracerebral infarction, and ischemia (stroke), or other traumatic brain injury (Dubey, Gobinathan, et.al, 2002).

Hydranencephaly is an extreme form of porencephaly (another rare disorder of the central nervous system which involves the existence of a cyst or cavity within the cerebral hemisphere) in which the cerebral hemispheres are absent and replaced by sacs filled with cerebrospinal fluid (NINDS, 2007) and remains the most severe form of bilateral cerebral cortical destruction. Differential diagnoses include bilaterally symmetric schizencephaly (a less destructive developmental process on the brain), severe hydrocephalus (cerebrospinal fluid excess within the skull), and alobar holoprosencephaly (a neurological developmental anomaly). Once destruction of the brain is complete, the cerebellum, midbrain, thalami, basal ganglia, choroid plexus, and portions of the occipital lobes typically remain preserved to varying degrees. 

Though the cerebral cortex is absent, in most cases the fetal head remains enlarged due to the continued production by the choroid plexus of cerebrospinal fluid that is inadequately reabsorbed causing increased intracranial pressure (Kurtz & Johnson, 1999). 

Although the exact cause of hydranencephaly remains undetermined in most cases, the most likely general cause is by vascular insult such as stroke or injury, intrauterine infections, or traumatic disorders after the first trimester of pregnancy (NINDS, 2007). In a number of cases where intrauterine infection was determined the causing factor, most involved toxoplasmosis and viral infections such as enterovirus, adenovirus, parvovirus, cytomegalic, herpes simplex, Epstein-Barr, and syncytial viruses. 

Another cause factor is determined to be monochorionic twin pregnancies, involving the death of one twin in the second trimester, which in turn causes vascular exchange to the living twin through placental circulation through twin-to-twin transfusion, causing hydranencephaly in the surviving fetus (Kurtz & Johnson, 1999). One medical journal reports hydranencephaly as an autosomal inherited disorder with an unknown mode of transmission, where an unknown blockage of the carotid artery where it enters the cranium causes obstruction and damage to the cerebral cortex. As a recessive genetic condition, both parents must carry the asymptomatic gene and pass it along to their child, a chance of roughly 25 percent. Despite determination of cause, hydranencephaly inflicts both males and females in equal numbers (NORD, 2007).

An accurate, confirmed diagnosis is generally impossible until after birth, though prenatal diagnosis using fetal ultrasonography (ultrasound) can identify characteristic physical abnormalities that exist. Through thorough clinical evaluation, via physical findings, detailed patient history, and advanced imaging techniques, such as angiogram, computerized tomography (CT scan), magnetic resonance imaging (MRI), or more rarely transillumination (shining of bright light through the skull) after birth are the most accurate diagnostic techniques (NORD, 2007). However, diagnostic literature fails to provide a clear distinction between severe obstructive hydrocephalus and hydranencephaly, leaving some children with an unsettled diagnosis (Dubey, Gobinathan, et.al, 2002).

Unfortunately, contrary to many other associated diagnoses, hydranencephaly carries a lesser positive prognosis and method of effective management. The outlook for children diagnosed with hydranencephaly is generally determined to be poor, with death occurring before the age of one (NINDS, 2007). Medical text identifies that hydranencephalic children simply have only their brain stem function remaining (Kurtz & Johnson, 1999) thus leaving formal treatment options as symptomatic and supportive. Severe hydrocephalus causing macrocephaly, a larger than average head circumference, can easily be managed by placement of a shunt (NINDS, 2007) and oftentimes displays a misdiagnosis of another lesser variation of cephalic condition (Kurtz & Johnson, 1999). Plagiocephaly, the asymmetrical distortion of the skull, is another typical associated condition that is easily managed through positioning and strengthening exercises to prevent torticollis, a constant spasm or extreme tightening of the neck muscles (Parker & Parker, 2002).

Though medical research exclusive to hydranencephaly is limited, there are research efforts in the realm of neural tube defects and prevention of congenital neurological conditions. We encourage you to research all aspects of the condition prior to settling on one aspect of the diagnosis. 


Monday, June 1, 2015

Tie Dye for Hydranencephaly Awareness Campaign

Throughout the month of June we will be bringing you several ways to raise awareness in your own communities, whether online or in your personal living space!

While we will be wrapping up hydranencephaly awareness month this June with our 2nd Annual "Let's Roll!" Hydranencephaly Awareness Walk/Run event, a global-wide event which gives anyone, anywhere the chance to participate in whatever capacity they are able to at a time convenient to them the weekend of June 27-28 - we also want to share with you another awareness campaign, one that is fun for the whole family!



The Tie-Dye Challenge for 
Hydranencephaly Awareness Month!! 

It's simple:

~tie dye a shirt, or whatever wearable or shareable item you'd like, or skip the work and just donate to Global Hydranencephaly Foundation

~post a picture of you in wearable/shareable tie-dye creation to our public Facebook page, Instagram, and Twitter communities

~Be sure to tag Global Hydranencephaly Foundation in your photo and use the hashtag #tiedye4hydran

~REMEMBER to challenge your own family & friends to either tie-dye or donate

The event is fun for everyone, regardless of age, and a great way to build awareness in your own community is by hosting a tie dye event!

Those donations for those who choose to donate rather than create, or for those that would simply like to make a financial contribution in addition, can be made at our June Hydranencephaly Awareness Crowdrise Fundraiser page:


Not sure where to begin with the tie-dying process??

We'll be sharing tips, tricks, and tutorials throughout the month - so stay tuned. BUT, to get you started - check out this awareness ribbon tie-dye tutorial from YouTube (remember our awareness ribbon color is light teal blue!! or you can do yellow and black - for the "bees") *this video is specifically for Breast Cancer Awareness, but you get the idea....





If you'd like t-shirt options with our logo to tie-dye, check out the black and white options on our Cafepress store by clicking HERE. We have the following designs readily available, but are happy to do custom designs as well. Just email us at President@HydranencephalyFoundation.org to make a request - or use any old tshirt you have lying around (the kids' tshirts that they've stained up are perfect for this project!!)

      
GHF Awareness        Bee-Lieve              I Love Someone


The most important thing is to share those pics of your creations and help this campaign go viral (remember the ice bucket challenge? This is WAY more fun and WAY less cold! Enjoy!

30 Days to BEE Hydranencephaly Aware: Statistically Speaking











Welcome to day one of Hydranencephaly Awareness month! Every day this month we will be bringing you a fact about hydranencephaly, our mission, or the children we represent. Join us for #30daystoBEEhydranencephalyaware


"Statistics show that hydranencephaly affects approximately 1 in 10,000 births worldwide, only 1 in 250,000 in the US alone where healthcare is of greater quality. The problem with these statistics is that the condition, when diagnosed or even suspected in utero, generally prompts doctors to recommend abortion. Those babies do not often count in statistics since formal diagnosis is not determined unless an autopsy is requested."

Seems like an appalling recommendation for a child who clearly, if you have been following us for any amount of time, could live a happy life full of love and laughter; but, it's the reality of this diagnosis - especially when delivered during pregnancy.

There is actually a long list of diagnoses that an be delivered in utero which are followed by a recommendation to give up on the child's life through abortion, which the medical community deems necessary by phrasing it as something like "medically induced termination". The phrase you don't want your child to have placed upon them, regardless of the diagnosis given, is the term "incompatible with life."

There have been dozens of times I've written about this very topic, or even just mentioned the existence of the term. If you're interested, you can read those posts by going HERE.
"Your child's diagnosis is 'incompatible with life,' they will not see, hear, breathe on their own, recognize their loved ones, regulate their own body temperature - they may suffer from seizures, and painful muscle spasms - they will never live a quality of life worth living and the life they do live will be short." ~statement made by most doctors upon diagnosis of hydranencephaly, or similarly presenting brain anomaly, in utero

As if termination/abortion wasn't the worse fate that children with hydranencephaly, as well as their parents, are facing - there is the term "slow code" which I've written about before. Read about this horrible ideal HERE.


Believe in the Impossible and believe in the possibilities that DO exist for your child, or any child, who is given a diagnosis of hydranencephaly.