Talk:Hydranencephaly

note
The last paragraph seems to contradict itself (emphasis mine): The '''outlook for children with hydranencephaly is poor. Death generally occurs before age 1'''. Many children live to be much older than 1. Death only occurs in very few cases were the children didn't get proper medical help. Perhaps someone with more knowledge on the topic can clear it up - maybe with a reference or two.

-----JRE--- 22:32, 5 October 2006 (UTC)

That last bit seems to be a nonsensical twist on the original... by "the original" I mean that most of this article seems to be taken almost word for word from the NINDS page listed in the "links" section (which would seem to me like plagiarism despite the changes).

According to the description of the condition, it sounds as if the hydranencephalic infant doesn't actually have a cerebral cortex. I'm no medical expert, but this would not seem to be conducive to long-term survival regardless of medical interventions. We're just not THAT advanced. Hierophany 07:53, 2 December 2006 (UTC)

Ultrasound Hx
The doctor who edits this will probably get annoyed and just take my change off, but there should be some mention of in utero diagnosis. Also, if possible, this would be an article which could definitely use an illustration of an ultrasound.

The website that a good deal of this information appears to come from is one that I visited when we received diagnosis, and I must say that in some cases it is far too optimistic. A great deal depends on how much of the brain remains and whether aggressive intervention is used. Our daughter had only a tiny portion of the brainstem remaining, so much so that the specialist thought we might be optimistic to expect her to live 15 to 20 minutes after delivery, and surprisingly she attempted breathing on her own and lived for an hour and 35 minutes. The survey-style study that is cited was not terribly scientific, although any information is better than none, due to its' very nature. Unfortunately, I doubt that the medical community will bother pushing for any better studies in the near future.

Again, going from what the maternal-fetal specialist has told me in-office, some tests with monkey models have produced hydranencephalic fetuses by occlusion of the carotid in utero - I suppose I will have to pester the man to publish a case study on us just so I can cite things on Wikipedia - and this led him to test for thrombophilia, for which it turns out I am homozygous (MTHFR C667t genetic mutation). Perhaps someone who actually has access to research journals can try to dig for this monkey model research and add it to this page.

http://pediatrics.aappublications.org/cgi/content/abstract/73/4/467 is an article which might bear consideration for additions to this article. Also perhaps adding a section about "ongoing research" might be helpful, that way even if this information is not enough to justify adding something it might be another source.

The more I look at this page, the more annoyed I am that most of the information comes from that overly optimistic site. Someone please check for other sources of information!

most recent edits?
this page used to be somewhat informative, but now it looks like someone copied and pasted a school paper into it or something and it's extremely hard to actually navigate the information. i'm undoing all the revisions, hopefully someone can come along who understands the material more and fix it. — Preceding unsigned comment added by 74.83.215.61 (talk) 19:49, 15 June 2011 (UTC)
 * I had to do this again. AliNichole0619 needs to stop doing this. 96.242.215.237 (talk) 14:01, 5 July 2011 (UTC)

Numerous edits have been performed on this page, many grouped into a short amount of time, beginning in June of 2011. Most though not all edits have been made by user AliNichole0619. As previous editor on this talk page has noted the tone of the original article has changed considerably from encyclopedic to non-sourced and opinionated. In addition, large sections have been blanked and/or replaced without contributions to this talk page - no reasons have been give as to the changes. As this user does not have a talk page of their own there is no way to contact them and request clarification. It is hoped they will check in to this topic and read the talk page in the near future so these matters can be cleared up and this article can move forward in content and quality of content.Neuronormal (talk) 06:05, 29 January 2012 (UTC)

External link to International Hydranencephaly Support Group, listed as an external resource from 2006 until removal by AliNichole0619 in 2011. Have gone back and forth with this particular user removing link and myself or a bot replacing it. Concerned that user is deliberately biasing article. Suspect self promotion or promotion of outside entity. Possible vandalism. He/She has no talk page. Any discussion on above issues or how to best resolve these issues is most welcome. Would appreciate it if AliNichole0619 would join discussion to explain edits. Would go a long way toward clearing things up. Neuronormal (talk) 06:21, 29 January 2012 (UTC)

AliNichole0619continues to remove link to another organization. The International Hydranencephaly Support Group has been around approximately 20 years and continues to operate using the same link which has been listed since at least 2006. Again waiting for contribution to discussion from AliNichole0619.Neuronormal (talk) 05:31, 9 April 2012 (UTC)

Removed external links to the International Hydranencephaly Support Group (aka "Rays of Sunshine") on Yahoo Groups (discussion group) & removed link to Rays of Sunshine's Facebook pages, as per Wikipedia policy of not linking to discussion groups. Removed external link to the Hydranencephaly Foundation - not sure this link contributes to the fundamental intent of this article. Neuronormal (talk) 23:14, 11 April 2012 (UTC)

Reinstated external link to http://www.hydranencephaly.com. The link goes to an external reference site covering basic information regarding hydranencephaly along with links to other sources of information and to support groups of use to parents with a hydranencephalic child. It is a comprehensive, covering a range of topics from the definition of hydranencephaly to an introduction to medical equipment often used in the home to care for someone with this disorder. Due to its length, additional subject matter, and basic writing style www.hydranencephaly.com serves the purpose of Wikipedia better as an external link rather than part of the page itself. This particular link has been repeatedly deleted by user AliNichole0619 and repeatedly reinstated by me. Any suggestions anyone? Neuronormal (talk) 11:28, 22 June 2012 (UTC)

Reinstated external link to the International Hydranencephaly Support Group. Again.Neuronormal (talk) 03:43, 28 October 2012 (UTC)

Optimism
As the adoptive parent of a teenager with hydranencephaly and also a two year old who was diagnosed in utero, I for one am glad to see some optimism included in the description of caring for a child with hydranencephaly. While it is true that the prognosis is generally poor, there are many exceptions to the rule. I personally have met many (over a dozen) children with hydranencephaly, all of whom are doing very well despite the poor prognosis they were originally given. My daughter was given weeks to live. She is now 13 years old. Though obviously disabled, she is happy and healthy. My youngest daughter faces more significant issues, but is continuing to improve and progress daily. Changing the links to support groups and constantly changing the description and definition of hydranencephaly is counter-productive on this wiki page. I have been to both discussion and informational pages. I suggest to both parties (neuronormal and alinichole0619) posting that the links be included to all sites hydranencephaly related. Let the readers who click on the links decide for themselves which is most helpful. HydranMother — Preceding unsigned comment added by HydranMother (talk • contribs) 18:41, 22 May 2014 (UTC)

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