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: “
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: