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.

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