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Changing Misconceptions of Hydranencephaly/Anencephaly in the Medical Communities

Posted Feb 26 2010 5:22pm
This was sent to the hydranencephaly online support group that I have been a member of since bringing Brayden home from the hospital with this new, and terrifying diagnosis. The people I have met in this group, have helped me with more than I ever thought imaginable in the beginning. I'm eternally grateful for them...

Bjorn Merker has done much for the families of children with hydranencephaly, and if you've followed my blog much he was source of information for a paper I recently wrote for my college class and shared here. Below is more information about Mr. Merker & what he is doing now:

Here is his letter
Bjorn needs videos and brain scans for the Hydranencephaly and Anencephaly Clinical Archive.

For those unfamiliar with Bjorn’s work to launch an Internet archive (which will not be open to the public, but only to qualified professionals after review of an application they must submit), please see the ”Introduction” at the bottom of this message.

For those of you who know about it, but have not yet sent Bjorn videos and brain scans of your child, here is a reminder
1. Select a few of your best home videos of your child, if possible with an indication of the age of your child at the time the recording was made, along with any comments you think might be helpful.

2. Locate brain scans of your child, if necessary by ordering them from your hospital. I prefer to have them on CD, but any other way is fine.

3. Additional written materials such as reports by radiologists, neurologists, prediatricians, etc. are valuable, and should be included if available, but are not absolutely necessary.

4. No one knows your child better than you do, so you are encouraged to write a personal statement as well, summarizing your knowledge in a few hundred words or so.

5. Indicate whether you want your child to appear under his or her own name on the website

(first name only will be posted, no other identifying information will be posted).

6. Once you have assembled the above, please send it to
Dr. Bjorn Merker

Gamla Kyrkv. 44



7. If you have questions about what to do, please contact Bjorn by e-mail at gyr694c@tninet. se


For those of you who have joined since I was active in the hydran mail group: I am a Swedish neuroscientist, about retirement age. I became interested in children with hydranencephaly because I had theoretical reasons for believing, contrary to many of my colleagues, that children with hydranencephaly should be conscious. Because there was so little to be found about them in the scientific literature, I joined the hydran group early in 2003 to learn more about your children. To make a long story short, what I learned in the course of several years as active member of the group (including spending a week with five families in Orlando) led me to write a big (very technical) article that was published in one of the foremost scientific journals, the Behavioral and Brain Sciences, in 2007. The title was "Consciousness without a cerebral cortex: A challenge for neuroscience and medicine" (it is linked on the Rays of Sunshine website).

This article had a huge impact, and even generated some echoes in the popular media, and now I am working to apply my scientific argument to medical ethics and medical practice, in the hope that this will help children with Hydranencephaly and Anencephaly get the treatment and the respect they deserve as conscious beings. In planning how to go about that, I realized that those who have no first-hand experience of children with hydranencephaly will challenge me along the lines of "what you are saying is obviously wrong, show us some evidence!" And then it struck me that they need the same evidence that you all have already - you have no problem understanding what I am saying when I say that hydran children are conscious! So let us show them your children, on the best home videos you have, along with the brain scans that you have or can get from the hospital where your child was born or has been treated!

So, I have set up a website on the internet under the name of "Hydranencephaly and Anencephaly Clinical Archive." Its contents will be available only to serious professionals after approval by me of an application where they identify themselves, present their credentials, and describe their reasons for wanting access to the archive. The archive will contain, for each child, anonymously or not - that's up to you - a small set of the best and most telling videos you have of your child, along with his or her brain scans, and possibly additional materials (see above).

The Archive will be managed by me personally in all its parts, and nothing will be delegated to any outside party. The value of the Archive will increase with every child that is added to it, so I hope that every one of you will participate, including those of you whose child has joined the angels. I encourage everyone to send me material, though I cannot guarantee that every child will be included in the archive. There are many technical reasons why the materials submitted for a given child might not be included, having to do with the instructiveness and clarity of the materials from the point of view of scientific evidence. Should your child not be included after you have gone to the trouble of sending me the materials, please do not be discouraged: the process of putting your documentation at my disposal for potential inclusion in the Archive is the only way to build up the Archive, and so it is an invaluable contribution even when it is not included for technical reasons.

The Archive is intended to be a permanent resource on the Internet to help professionals acquaint themselves with children with hydranencephaly, just like I did by joining the group, and spending time with five families in Orlando. That was unforgettable, but since every professional cannot do the same, let us give them a chance to get to know your child through your videos! That way - this is my hope - your child will help change the medical profession's attitudes about hydranencephaly in a way that will benefit all children born with hydranencephaly and their families.

With my love and best wishes to all of you, Bjorn.

PS: If you wonder about the inclusion of children with anencephaly in the Archive, this has to do with some recent longer than usual survival of children born with anencephaly that have come to my attention. Though anencephaly has a different origin, and differs in many ways from hydranencpehaly, it shares the drastic loss of hemispheric tissue (in anencephaly that loss is complete) with hydranencephaly, and so both fit within the purpose of the Archive, where anencephaly will have a separate section of its own.

That being said, and shared here...if you have a child with hydranencephaly or anencephaly, please participate in helping this plight. It is wonderful to have someone in the medical community who is willing to raise awareness of these conditions, and enlighten those who are so poorly educated in the truly amazing lives that these miraculous children lead. 
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