Tuesday, June 24, 2014

BUZZ: Happy Heavenly BEE-Day!

BUZZ: Happy Heavenly Bee-Day!

Tried and True Tuesday: "Slow Code"

I have to admit, when it comes to all things hydranencephaly I always focus on the rainbows and butter... Eh, bumblebees. 

Although I've faced the dark, scary horrors that this condition can bring to life; I have chosen to keep things realistic with a heavily positive edge. 

The true stuff is rarely great, in a "woohoo" fashion; but more like in a "cover my eyes, I don't want to see" while peeking through my fingers kind of style. Some of the true stuff is pretty incredible, on both ends of the spectrum, and you can come be witness... But I've now made a commitment to bring it all to our audience in an effort to better portray all things hydranencephaly.

Starting with my most recent appalling discovery.... 

Perhaps this article from Life News features a different diagnosis, Trisomy 18, but the prognosis and the story are entirely the same. You can read the whole story HERE, but I've quoted some important points:

"...2 ½ years old and began to have some serious illnesses that almost took her life several times. The hospital did some basic things to help her get over the illness and we thought that they were giving her the necessary care any other child would receive."

A piece of the Hippocratic Oath, the oath historically taken by physicians who swear to practice medicine honestly and comes to mind so often when reading cases such as this: "I will prescribe regimens for the good of my patients according to my ability and my judgment and never do harm to anyone." "In every house where I come I will enter only for the good of my patients, keeping myself far from all intentional ill-doing..." and most importantly when I cannot see how else to view these cases other than as a violation of this oath, "If I keep this oath faithfully, may I enjoy my life and practice my art, respected by all humanity and in all times; but if I swerve from it or violate it, may the reverse be my life."

And back to the gory topic of this particular article:

"...Slow Code is when the medical providers offer the appearance of treatment, but knowingly administer the treatment so slowly that it is useless to the patient. This may sound crazy and like something we might make up. We not only learned the term from their industry journals, but we experienced it.

There are times in a hospital where you might hear CODE BLUE for an emergency, but why is it you never hear CODE SLOW? Hospitals hide this practice in a deceitful way so they can inflict their decision on the patient. This is not care, but lethal neglect or intentional death which I have always termed murder.

In one article of the Journal of Perinatology, a pediatric ethics committee discussed an option of Slow Code as a possible solution in the case of an infant with poor prognosis. CPR had been offered to the parents and was later withheld by way of a DNR placed on the patient by doctors. The committee debated this decision, but only from the perspective that CPR should probably have never been offered in the first place.

So here we have a committee of medical “caregivers” suggesting that forms of care should not even be offered to patients based upon their value(less) judgment. Withholding medical care and suggestions for treatment is now the medically ethical way to handle a patient? In the end, this particular committee decided that it is deceitful to use Slow Code. Ya think? The fact that this suggestion was even considered legitimate enough to be discussed is troubling."

I first read this article the day it was posted, just over a week ago on June 16, 2014. It's not an outdated medical practice, one that died with institutionalizing children with special needs (a practice that has, unfortunately NOT died entirely!), this is true-life and considered common practice today...

Unfortunately, aside from a blip in an online dictionary and a brief mention of the discussion on NPR back in 1998, I have been unable to sit and dig through further research sources to find out how well-practiced this is in care facilities (but sadly, I do not doubt for one second that this is some disgusting underground secret that families are totally unaware of). The NPR topic description includes the following, "..."Show Code," "Hollywood Code" and "Light Blue," a Slow Code happens when a terminally-ill patient goes into cardiopulmonary failure. The medical staff goes through the motions of attempting resuscitation but do not make a sincere attempt to revive the patient. Dr. Gazelle maintains this occurs because the attending physicians has not written a DNR order or the patient's family has requested that "everything be done" to save the patient, but the doctor decides that the patient can not expect a quality of life that warrants sincere efforts at resuscitation." Read the full transcript of the interview HERE

Unsure whether it is a memory that grew from reading this article, but I faintly recall a mention of this code during failed resuscitation efforts in my own home in November 2012. There will be more on this topic, but in the meantime... please be aware and prepared to advocate for your child or anyone else in your life that falls under circumstances which may prompt this code.

Monday, June 23, 2014

Buzz-worthy Share!

I love stumbling upon links to our efforts in unlikely places. 

A lot has happened since November 23, 2012 when this post was made. I faintly remember being in touch with this author and I know I shared my appreciation of her support. 

Check us out over on the blog "Caring for Medically Fragile Children" and guess which one of our bees is featured there! "

Gotta love that smile!  If your child has hydranencephaly this group, The Global Hydranencephaly Foundation, is full of hope, support, and understanding."

If you stumble upon a site that is in desperate need of a heavy dose of reasons to "Believe in the Impossible," please forward along the information to: President@HydranencephalyFoundation.org so I can freshen things up a bit more around the web with some accurate information and pertinent resources.

Meet the Bees Monday: Brantley

Thanks to Brantley's mommy for putting this together and allowing us to share her sweet little man! 
If you'd like to share your child's story with those who are following our mission, you can do so by contacting me at President@HydranencephalyFoundation.org

Monday, June 16, 2014

Bee-ography Monday: Sophia

This week's Bee-ography comes from bee-beauty Sophia's family in Chile. I always try to share each journey just as it is given, so please bare with the difficulties in translation of information. From mother Pamela: 

"My pregnancy was mainly a very short pregnancy, as I learned while five months, when I had the first ultrasound I was told that Sophia came with complications, and the week of the first ultrasound they said was not a viable pregnancy, Sophia would be born and would not last long, a few minutes or hours.

My family was my full support because doctors did not believe my daughter did not trust that she would live. Find pages of families with children with hydranencephaly was the most support, but neither wanted to delude ourselves too much with the viability of my daughter.

Sophia was born by Caesarean section, as it came in the breech position. She was hospitalized 10 days, which was with nasogastric tube and oxygen. Oxygen had it for a couple of months and the probe had for six months. Fortunately now we do not need any intervention.

For me, Sophia is everything. He has filled my life with wisdom, love and happiness! It has been my best experience as a mom, I feel too lucky to have her as a daughter, I have met thanks to her wonderful situations, a deep and infinite love, believe in the impossible, I have met wonderful people, their doctors therapy, family and their beautiful bee bee-friends.

If I had one piece of advice: that perhaps everything is difficult, but we must never stop believing!

Sophia really likes loud sounds, music, songs juegutes. She loves to dance and ride car, likes to watch the sunlight and walk in the shopping trolley. Likes to eat dish is his favorite of all things and also loves to eat avocado. He likes to be held and take arms, is very regalona, and I also really like their therapy with the "vestibulador".

Sunday, June 15, 2014

A Bee-Keeper's Special: Happy Father's Day!

In 2013, several of our families were in attendance at the first ever Hydranencephaly Conference in Allen, Texas. It just so happened to wrap up on Father's Day... and this video debuted. Enjoy:

Tuesday, June 10, 2014

Tried and True Tuesday: To Blog or Not to Blog

Did you know that this entire mission was inspired into existence by a small group of kids across the globe who have never spoken a word and their parents whom most have never met one another? That just be simply "being" and "believing" together, they created the foundation for what would become this very nonprofit organization.?

Incredible when you lay it out like that, right?

I started blogging in 2009 after having found great solace in sharing Brayden's story on his CaringBridge page; where it still serves a the written story of his journey, and ours, with hydranencephaly. You can read it HERE

Essentially, writing became the greatest therapy.

When asked by Terri Mauro, About.com Children with Special Needs, to tell about my special needs parenting blog; this was my answer shortly after having jumped on the blogging trend:

Why I Started: My son was diagnosed with hydranencephaly, a rare neurological condition deemed terminal by "medical professionals". I was blessed in meeting others online that gave me a glimmer of hope to fight for my 'lil man and after receiving many comments in regards to what the texts said when people would "google" the diagnosis, I set out on a plight to inform as many as I can about the true nature of this condition. Although the prognosis is scary, every moment is a blessing. I find comfort in reading about every aspect of this condition, from a medical perspective and meeting with other parents who have experience.
How I Do It: Although I am a mommy to three, my youngest having hydranencephaly, I keep it pretty general in terms of my feelings as a parent, details of the condition, knowledge I have found in regards to this and similar conditions....since I am at peace with finding more and more about facing this condition, I want to share it with as many as I can in the hopes that somewhere along the way someone will read it and know that there is hope when most of the time the diagnosis is given with a death-sentence. There is light in the dark, there are miracles in every moment...
I am fairly new to the blogging world and am still trying to figure it out myself. I love to write, and blogging definitely helps me to get my thoughts out there...it is just a plus that I have been fortunate enough to network with people and help a few along the way.
Advice: Knowledge is power, the more you learn and share, the better! Be prepared for anything... some people live with the motto "ignorance is bliss" and have their own opinions to share. Know that the people you connect with, you will develop a strong connection with... even if you never meet in person! Sometimes they're the closest people in your life.

This blog-stuff all started with the one mentioned above, "Small Portion of a Life's Journey" in mid-summer 2009. Up until just a moment ago, I thought it no longer existed on the web since transferring over the "relevant" posts to create this blog. Much to my surprise, a quick Google search discovered that it still very much exists through various other outlets. 

I forgot how  much I love the quote I had shared in the header:

"Hope is a state of mind, not of the world. 
Hope, in this deep and powerful sense, 
is not the same as joy that things are going well, 
or willingness to invest in enterprises that are obviously heading for success, 
but rather an ability to work for something because it is good." 
-Vaclav Havel

When I started blogging, I never realized the impact I could have with my written words. When I started, I never thought twice about who would read it and how they would feel about the information I had shared. I also did not realize, until this very moment, the impact my decision to delete the blog would have on others. Sifting through blogs that had shared my words, I now find the remnants of broken links or pages redirected to an empty blog url now taken over by some random name. 

if only I'd known that there really was an audience of support out there... 

Post courtesy of Riley's Smile on May 3, 2011: "From Small Portion of a Life’s Journey: Why I Haven’t Posted Regularly: “I still have in my possession an overflowing computer folder of information to share, but recently I’ve kept a huge secret that I have let e…” I share this because Ms. Harper deserves recognition for her amazing efforts and a strong future for her new Foundation, The Brayden Alexander Global Foundation for Hydranencephaly."

This very post started as a rambling about a year ago... discovered today as I am researching whether to continue blogging. From the original post, "I write what comes to mind as I go. I don't have a plan for what to write and I rarely will edit my words. Whatever goes on the blog, or on the paper, or IN the publication I'm working on is what comes out the first time (with minimum proofreading beyond spell-check)."

Somewhere along the line I think I started worrying too much over who was reading and how my writing would be interpreted... instead of blogging with a purpose, I began blogging to meet some unrealistic expectations that came out of nowhere. Without feedback, I started to feel like everything was going out to a nonexistent audience.

Add to that realization the fact that my little investigation this afternoon shows HUGE benefits to anyone with a business, for or non-profit, and I think I have found my answer to the above:

"To Blog or Not to Blog"

The final game-changer, since I was nearly 100% ready to pull the plug on the blog, was this from Martha Spelman, a branding and marketing consultant and expert in small business...

"Your blog is the “must-have element” of an effective and vibrant content marketing strategy.  A blog can provide much of the content that will filter into other formats: articles, ebooks, webinars, podcasts, videos, newsletters, social media channels, and more. Not too long ago, I was chatting with a marketing colleague, discussing social media, and she said, “The first place I look when I go to a website is the blog.”  Why? “Because it’s where I can really find out about a company – who they are, how they work, about their expertise and experience and frankly, whether I want to buy their products or services.”  As I’ve said previously, content you create – well-crafted and properly promoted —establishes credibility and builds trust."

So, the attention that needs to be given to our blog will begin.... and I have to say I'm now happy to dive back in, reenergized and reminded of the reasons why this all began! Be on the lookout for some big changes and while you're waiting, check out our new and improved website by clicking HERE

Monday, June 9, 2014

Bee-ography Monday: Keelin Rose

This is Keelin Rose; daughter to the proudest parents ever and sister to Aaron & Clodagh. Born on Tuesday March 11, 2014 then grew her angel wings and flew to heaven on Monday March 17, 2014. 

She was diagnosed with hydranencephaly in utero, which was later changed to Dandy Walker Syndrome prior to birth; both are similar in presenting as the absence of brain tissue and often diagnosed in place of one another. Regardless of the "official" label, she holds a special place in our hearts and is forever part of our hydran-family.

From her Facebook page: Keelin Rose Coomey

Tiny Footprints

"These are my footprints, so perfect and so small. 
These tiny footprints never touched the ground at all. 
Not one tiny footprint, for now I have wings. 
These tiny footprints were meant for other things. 
You will hear my tiny footprints, in the patter of the rain. 
Gentle drops like angel's tears, of joy and not from pain. 
You will see my tiny footprints,  in each butterflies' lazy dance. 
I'll let you know I'm with you,  if you just give me the chance. 
You will see my tiny footprints, in the rustle of the leaves. 
I will whisper names into the wind, and call each one that grieves. 
Most of all, these tiny footprints, are found on Mommy and Daddy's hearts. 
'Cause even though I'm gone now, We'll never truly part."

If I Were Here What Would I Say?

Yes it is true that I never got to see all that this world holds.
The flowers, the trees, grass - or a bright sunny day.
Not even the smiling faces of my loving family.
But in my heart I have seen all of these things, even in my short time.

It is also true that I never got to feel the many things that you take for granted ...
The heat on my face on a hot summer's day,
Finger paints and crayons I will never hold in my hands.
But I did feel the loving arms of my Mummy and Daddy cradling me gently. 
I never got to hear all the sounds that make most hearts sing,
The laughter of a loved one, or the sweet song of a bird,
Songs on the radio and the words "I love you" are to me a mystery.
But the soft touch of my Mummy and Daddy's hands shouts to me all of this and more. 
I will never know the joy of running through a field of flowers,
Never will I roll down the side of a hill, too dizzy to stand.
Hide and seek, tag and catching ball I will have missed,
But in my mind I will do all of these things and more. 
You all may see it as me missing out on all these things by leaving you so soon,
But where I am going I will do, see and hear everything you do and more.
I will only think of good things - for in my short existence that is all I have known.
So don't cry for me, I will do all that you have wished for me and more. 
One thing I want you to hold on to is that I have not known how to hate, how to feel jealous, or anguish or any of those emotions that can eat away at your soul.
My soul is set free with only one feeling - for in my short time here with you I only knew love.
And that is what I take with me now.

Lorraine Lehman-Jones

Sunday, June 8, 2014

National Best Friends Day

Who would ever imagine that a group of people spread across the globe would become close enough to call themselves family?

"What greater thing is there for human souls than to feel that they are joined for life – to be with each other in silent unspeakable memories." 
~George Eliot

"What is a friend? A single soul dwelling in two bodies." 

Friday, June 6, 2014

Tattoo Thursday... a day later

June 5th is recognized as Tattoo Tuesday & I am so very bummed that the day got away from me before I finished my original post. I almost scrapped the whole thing, but we  have far too many great tats not to share... so, I just whittled away at what I started and compiled a quick collage:

It has been an extreme honor to be apart of the "bee" trend... enough that families have carried that theme along throughout their days. Unless you "get" the whole bee thing... you just can't understand. Any tattoos you'd like to share?

Tuesday, June 3, 2014

Tried & True Tuesday: Prosthetics

Quickly, I'd like to first recognize Dr. Charles Drew Day... today is the birthdate of the physician, surgeon, and medical researcher who developed a system for storing blood plasma & organized the 1st blood bank in NY during WWII. This development allowed medics the opportunity to save thousands of lives during the war as well as long after. Ironically, he was not allowed to donate himself since he was black and his continued protest of the existence of racial segregation in regards to blood and medical interventions, ultimately cost him his job. Kudos to Dr Drew for continuing to continue research and practicing what he believed in, despite adversity and criticism.

"Somewhere, something incredible is waiting to be known." 
~Dr Carl Sagan

Now, prosthetics...

you first think of "fake" body parts used as a replacement for a leg lost in battle or a foot lost to disease... but they've also brought about a great increase in the quality of life for those who have found themselves in circumstances warranting the use of one or more.

The word is from the Ancient Greek word prĂ³sthesis meaning: "addition, application, attachment" and is an artificial device that replaces a missing body part, which may be lost through trauma, disease, medical necessity or congenital conditions.

Children with hydranencephaly do not typically benefit from the use of these "tried and true" replacement body parts...

or at least not yet!

image courtesy of The New York Academy of Sciences at nyas.org

Introducing the concept of neuroprosthetics 

yes, that's a real thing; 

it's actually a discipline bringing together the world of biomedical engineering and neuroscience in order to create brain prostheses. Series of devices, think cochlear implant, are being created to boost the abilities needing extra attention in order to function at a more "typical" level; one more in line with independent, healthy living. As these teeny, tiny internal motors communicate with external  prosthetics wirelessly; the greater the possibilities that exist are for those requiring implantation.

As shared by our friends at Disabled World:

Neural Prosthetics - New Hope for Disabled World
Author: American Society of Mechanical Engineers
Published: Mar 23, 2014 (Revised: Mar 23, 2014)

Detail: Among the marvels of modern medicine are neural prosthetics, tiny bioengineered devices that surgeons implant in brain tissue to compensate for a variety of disabilities to the human nervous system. Physicians already have had much success with cochlear implants for the hearing impaired, with future research programs aimed at assisting epileptics, victims of Alzheimer's disease, and even individuals who have sustained spinal cord injury and loss of limbs.

Neuroscientists see a vast horizon for these micro implants, which are able to read electrical and chemical signals from the nervous system to stimulate sensory function lost through disease or injury. What the amazing devices do is avoid the damaged neural lines of communication in the body to restore function. In the case of the cochlear prosthetics, for example, sounds gathered from a tiny microphone are converted to electrical signals and used to stimulate the auditory nerve of deaf patients.

Neurologists, orthopedic surgeons, materials scientists, and mechanical engineers are all collaborating on the research and development of neural prosthetics, which each year receive $6.5 million in funding at the National Institutes of Health.

Engineers play a significant role in the interdisciplinary research and development of neural prosthetics.

Engineers will be called on to make innovative use of materials to design and fabricate devices that allow sustained electronic functioning in the environment of the human body, without causing tissue infection or other serious conditions. Research efforts have focused on technologies that enable the micro devices to be safely implanted in human tissue for long periods. Sarah Felix, a research engineer at Lawrence Livermore National Laboratory and member of the American Society of Mechanical Engineers (ASME), is making gains with thin-film flexible polymer materials that allow devices to conform to the live tissue in which they are implanted.

Lawrence Livermore is currently developing neural implants that are able to restore auditory, motor and bladder function, aid speech, and control depression and epilepsy.

Future programs at the lab include experimentation with deep brain and spinal cord stimulation, which will enable physicians to advance neural prosthetics to the next level of human health and rehabilitation.

Promising clinical studies are underway at some of the most prestigious medical research centers in the U.S. as the scientific community continues to advance neural prosthetics to help disabled persons achieve quality of life.

Indeed, neural prosthetics will be an intriguing pathway of multidisciplinary scientific and engineering development for years to come.

Now, who was the last person to question why I believe in investing in medical research? Any more questions?

Monday, June 2, 2014

Meet the Bees Monday: Awareness Style

What's "awareness style"?

Just a little term I threw on the end of title really, in keeping with the awareness raising all month long.

So, without further adieu.... here are a few of our past "Meet the Bees" collages for your viewing pleasure:

and if you'd like to give permission for us to share your bee for an upcoming "Meet the Bees" feature, email our Graphics Specialist, Katie Wright, at katie_wright_06@gmail.com

Sunday, June 1, 2014

BEE-aware: Global Day of Parents

Observed the 1st of every June, the Global Day of Parents was proclaimed by the United Nations General Assembly in 2012 in order to honor parents throughout the world and provides the "opportunity to appreciate all parents in all parts of the world for their selfless commitment to children and their lifelong sacrifice towards nurturing this relationship...." 

GHF recognizes the roles of all parents, particularly the parents in our community: our "bee-keepers" who most often rise above and beyond the typical call of duty in parenthood by advocating, educating, and outright going to war in order to ensure their children are given a chance at the quality of life they deserve. 

from the United Nations website:

Parents of every race, religion, culture and nationality in all parts of the world are the primary caregivers and teachers of their children, preparing them for a happy, fulfilling and productive life. Parents are the anchors of the family and the foundation of our communities and societies.

Parents and children's rights
The principles outlined in the international human rights framework apply both to children and adults. Children are mentioned explicitly in many of the human rights instruments; standards are specifically modified, or adapted, where the needs and concerns surrounding a right are distinct for children. The Convention on the Rights of the Child brings together the children’s human rights articulated in other international instruments. This Convention articulates the rights more completely and provides a set of guiding principles that fundamentally shapes the way in which we view children.

All children have the same rights. All rights are interconnected and of equal importance. The Convention stresses these principles and refers to the responsibility of children to respect the rights of others, especially their parents. By the same token, children's understanding of the issues raised in the Convention will vary depending on the age of the child. Helping children to understand their rights does not mean parents should push them to make choices with consequences they are too young to handle.

The Convention expressly recognizes that parents have the most important role in the bringing up children. The text encourages parents to deal with rights issues with their children "in a manner consistent with the evolving capacities of the child" (article 5). Parents, who are intuitively aware of their child's level of development, will do this naturally. The issues they discuss, the way in which they answer questions, or the discipline methods they use will differ depending on whether the child is 3, 9 or 16 years of age.

Traditionally in many societies, fathers have been moral teachers, disciplinarians and breadwinners.  In many countries, there is now an increased emphasis on the father’s role as a co-parent, fully engaged in the emotional and practical day-to-day aspects of raising children. Recent research has affirmed the positive impact of active involvement by fathers in the development of their children.

Yet challenges persist for fathers -- and for society and social policy.  Too many men have difficulty assuming the responsibilities of fatherhood, often with damaging consequences to families, and inevitably, society at large.  Some fathers inflict domestic violence or even sexual abuse, devastating families and creating profound physical and emotional scars in children. Others abandon their families outright and fail to provide support.  Researchers continue to explore how the presence or absence of fathers can affect children, in areas such as school achievement and crime.

At the international level, migration forces many fathers to often face separation from their families.  Migrant fathers may encounter a starkly different concept of fatherhood in their country of destination than what they knew in their home country -- and may even be rejected by their children as they grow up in a new society. 

The HIV/AIDS crisis challenges fathers worldwide as it demonstrates the critical importance of sexual responsibility for fathers and all men. The crisis also challenges men to become father figures to children who have been left orphaned by the disease.

These challenges all highlight the deep and universal need for positive father figures in families. As our understanding of fatherhood grows, there is an opportunity for men to re-envision imaginatively what it means to be a father and to see opportunities to make a difference in communities.

Mothers play a critical role in the family, which is a powerful force for social cohesion and integration.  The mother-child relationship is vital for the healthy development of children. And mothers are not only caregivers; they are also breadwinners for their families. Yet women continue to face major -- and even life-threatening -- challenges in motherhood.

Childbirth, which should be a cause for celebration, is a grave health risk for too many women in developing countries.  Improving maternal health is the Millennium Development Goal on which the least progress has been made. A woman in a least-developed country is 300 times more likely to die in childbirth, or from pregnancy-related complications, than a woman in a developed country.  We must make pregnancy and childbirth safer by enabling health systems to provide family planning, skilled attendants at birth and emergency obstetric care.

Violence against women, many of whom are mothers, remains one of the most pervasive human rights violations of our time. It has far-reaching consequences -- endangering the lives of women and girls, harming their families and communities, and damaging the very fabric of societies.  Ending and preventing violence against women should be a key priority for all countries.

We must also ensure universal access to education. The benefits of educating women and girls accrue not only to individual families, but to whole countries, unlocking the potential of women to contribute to broader development efforts. Statistics also show that educated mothers are much more likely to keep their children in school, meaning that the benefits of education transcend generations.

As we strive to support mothers in their caregiving work, we should develop and expand family-friendly policies and services, such as childcare centres that would reduce some of the workload placed on women. Women and men, alike, need stronger public support to share equally in work and family responsibilities.  Families built on the recognition of equality between women and men will contribute to more stable and productive societies.

For additional family resources provided by the United Nations, visit: http://www.un.org/en/events/parentsday/resources.shtml

Happy June!

Happy June...

Better yet...

Happy Hydranencephaly Awareness Month!!

Expect to be hearing more from us this month than ever before... not only have we recently achieved our 501c3 nonprofit status, but we have SO much news to share with everyone! Please consider subscribing to our blog via email (which will place our posts directly in to your email inbox) by checking out the blog homepage and typing your email inbox in to the subscribe bar: