1. Anencephaly Support Foundation Nonprofit support organization with information, personal stories, and resources for families, parents, and medical professionals. http://www.asfhelp.com/

2. Anencephaly Awareness-info On Possible Causes And Future Prevention Information about anencephaly, such as possible causes and future prevention. http://www.angelfire.com/mb/jessicasjourney/info.html

setAdGroup('67.18.104.18'); var cm_role = "live" var cm_host = "angelfire.lycos.com" var cm_taxid = "/memberembedded" Search: Lycos Angelfire Murderball Share This Page Report Abuse Edit your Site ... Next Anencephaly Awareness When we first found out our daughter had anencephaly we tried to find out as much information on this defect as possible. The public library was no help and neither were our doctor's. We turned to the internet and found so much information. We have summarized the many articles we have found in hopes to help other's on this search journey. References Everything you ever wanted to know about Anencephaly, but couldn't find! Anencephaly: Is known as a neural tube defect. One of the most common occurring in about 1 out of every 1000 pregnancies. It is the failure of the neural tube to close properly resulting in the absence of the major portion of the brain and the top part of the skull. Neural Tube: The neural tube is a narrow sheath (see picture) that folds and closes between the 3rd and 4th wks of pregnancy (roughly 21 to 28 days after conception) to form the brain and spinal cord. When the cephalic or head end of the tube fails to close properly, it results in the absence of the major portion of the brain, skull and at times scalp. Infants are born without a fore-brain (the thinking and coordinating area)and are usually blind, deaf, unconcious and are unable to feel pain. Infants may exhibit reflex actions, such as respiration and responses to touch and sound. ( I truly believe that even though my daughter may have been deaf, that her soul...her spirit was not and that she was able to hear and feel my love for her)

3. Anencephaly Net An internet hub providing facts about anencephaly. Includes fact sheets and links for prenatal support, information, policy, grief support, and memorial http://www.anencephaly.net/

Anencephaly Net anencephaly n : a defect in brain development resulting in small or missing brain hemispheres. A congenital absence of the brain and cranial vault, with the cerebral hemispheres completely missing or greatly reduced in size. Anencephaly Support and Information Anencephaly Information - from The National Institute of Neurological Disorders and Stroke. Wikipedia Entry for Anencephaly Anencephaly Fact Sheet Anencephaly Awareness - Everything you ever wanted to know about Anencephaly, but couldn't find! References on Anencephaly and Folic Acid Anencephaly Page (from Web Archive Carrying to Term Pages - After a devastating prenatal diagnosis, it's too often assumed that a mother will automatically terminate the pregnancy. This website was designed for those who are determined to carry their unborn child to term despite the child's fatal condition. While many tips come from personal experience, this site actively solicits tips from other mothers and fathers who have been there. Anencephaly Support Foundation - information, personal stories, and medical articles regarding the neural-tube defect of anencephaly. If you wish to send a donation, Anencephaly Support Foundation has a non-profit separate account set up to pay for the operating expenses (i.e.. the web site, postage, long distance charges, copying, supplies). Many families have sent donations so that ASF can continue to provide support to others.

4. Transplantation Of Organs From Newborns With Anencephaly Issues discussion by Bioethics Committee, Canadian Paediatric Society (CPS) http://www.cps.ca/english/statements/B/b90-01.htm

Transplantation of organs from newborns with anencephaly Bioethics Committee , Canadian Paediatric Society (CPS) Canadian Medical Association Journal Reference No. B90-01 Revision in process January 2004 Index of position statements from the Bioethics Committee The Canadian Paediatric Society gives permission to print single copies of this document from our website. Go to our alphabetical list of statements to see which of our position statements are available as pdf files. For permission to reprint or reproduce multiple copies, please submit a detailed request to info@cps.ca Contents Organ transplantation in newborns Organ donation from anencephalic newborns Competing resources Recommendations ... References Organ transplantation in newborns The criteria and ethical principles that apply to organ transplantation involving children and adults also apply to the newborn, as either recipient or potential donor. The stakes for recipients and their families are high; therefore, there is considerable obligation to ensure that the family understands the limited medical knowledge about both the risks and benefits of the procedure. Given that transplantation in newborns is innovative, that our knowledge of the intermediate results is limited and that the long-term results have yet to be evaluated, physicians performing such transplantations must evaluate the benefits, problems and costs to the infants, their families and society, the evaluation should include the families of "successful" and "unsuccessful" potential donors and of recipients.

5. Anencephaly Definition, epidemiology, pathogenesis, clinical features, investigations, and management of anencephaly from a healthcare workers perspective. http://www.angelfire.com/mn/michaelashope/anencephalyfact.html

setAdGroup('67.18.104.18'); var cm_role = "live" var cm_host = "angelfire.lycos.com" var cm_taxid = "/memberembedded" Search: Lycos Angelfire Star Wars Share This Page Report Abuse Edit your Site ... Next Anencephaly DEFINITION: A neural tube defect affecting the skull resulting in a large defect of the calvarium, meninges, and scalp which is incompatible with life. EPIDEMIOLOGY: *incidence: 1/1000 live births *age of onset: newborn *risk factors: *geographic variable with incidence increased in Ireland and Wales and decreased in Asia, Africa, and South America *genetic recurrence rate is 4% and increases to 10% if a couple has had 2 previous anencephalic infants whites > blacks (6:1) F > M *environmental/nutritional low SEC, environmental and toxic factors nutritional and vitamin deficiences folic acid antagonists drinking water minerals *perinatal maternal infections and/or hyperthermia *associated anomalies: 50% polyhydramnios (unable to swallow amniotic fluid) 10-20% folded ears, cleft palate, congenital heart disease PATHOGENESIS: 1. Background

6. Anencephaly Jessicas Journey A parent's personal experience, relating her daughter's story. http://www.geocities.com/hotsprings/spa/4346

This memorial is for our daughter, Jessica Marie ,and all the other precious little babies who have left this world too soon. Our precious little baby had a birth defect called Anencephaly (the major portion of her brain and the top part of her skull had failed to develop). Incompatible with life we were told. How those words still ring in our ears. We found out at 17wks and decided to carry her to term. We understand what a difficult and unfair decision this is and do not judge nor condemn those who chose to interrupt their pregnancy. We are All parents and we All love our little angels. It is our hope that those who enter here will find comfort, support and will feel a little less alone. Forever Love Mommy when it's time , time for me to go. Please don't cry to much, though I know you'll miss me so. Just know that I'll be fine, and please don't be sad. I'll be on my way to Heaven. I'll be with our Heavenly Dad. I heard you when you talked to me and sang our special song. It made my spirit happy, though our time together wasn't long.

7. Anencephaly What the Committee on Doctrine National Conference of Catholic Bishops (US) has to say about anencephaly. http://www.ewtn.com/library/PROLIFE/bcdanen1.htm

MORAL PRINCIPLES CONCERNING INFANTS WITH ANENCEPHALY Committee on Doctrine National Conference of Catholic Bishops (U.S.) BCD Staff Commentary Fr. Benedict Ashley Commentary Anencephaly is a congenital anomaly characterized by failure of development of the cerebral hemispheres and overlying skull and scalp, exposing the brain stem. This condition exists in varying degrees of severity. Most infants who have anencephaly do not survive for more than a few days after birth. Modern medical techniques usually can determine this condition with a high degree of certainty before birth. When anencephaly is detected, some physicians recommend that the pregnancy be terminated in order to free the mother from the psychological anxiety and possible physical complications throughout the remainder of the pregnancy. According to the well-established teaching of the Catholic Church, the rights of a mother and her unborn child deserve equal protection because they are based on the dignity of the human person whatever the condition of that person. Consequently, it can never be morally justified directly to cause the death of an innocent person no matter the age or condition of that person. Some have attempted to argue that anencephalic children may be prematurely delivered, even when this would be inappropriate for other children. This argument is based on the opinion that because of their apparent lack of cognitive function and in view of the probable brevity of their lives, these infants are not the subject of human rights or at least have lives of less meaning or purpose than others. Doubts about the human dignity of the anencephalic infant, however, have no solid ground, and the benefit of any doubt must be in the child's favour. As a general rule, conditions of the human body, regardless of severity, in no way compromise human dignity or human rights.

8. Anencephaly Net An internet hub providing facts about anencephaly. Includes fact sheets and links for prenatal support, information, policy, grief support, and http://tmsyn.wc.ask.com/r?t=an&s=hb&uid=24312681243126812&sid=343126

9. Anencephaly Information Page National Institute Of Neurological anencephaly information sheet compiled by the National Institute of Neurological Disorders and Stroke (NINDS). http://tmsyn.wc.ask.com/r?t=an&s=hb&uid=24312681243126812&sid=343126

10. ANENCEPHALY SUPPORT FOUNDATION - Personal Stories Twenty weeks into my pregnancy a routine ultrasound revealed anencephaly. I found out that our son Charles, had anencephaly when I was about 7 1/2 http://www.asfhelp.com/asf/personal_stories1

msetm=true;mi=new Array(7);mindex=0; mi[mindex++]=46; mi[mindex++]=14; mi[mindex++]=54; mi[mindex++]=78; mi[mindex++]=132; mi[mindex++]=145; Personal Stories The following heartfelt stories are from families who have carried their anencephalic baby to term. Many themes reappear throughout, such as: despair, fear, shock, anger, abandonment, and, in some cases, hurtful comments by family and friends. If you have a story you would like to share with others,click HERE. We will make every effort to include it among these stories in the hopes that it will encourage and strengthen others who follow. Abby Lynn Amara Annalise  Benjamin William  ... Charles Abby Lynn Our baby was born on December 20, 1985.  She was the most beautiful child I had ever seen. Abby Lynn was diagnosed anencephalic on November 5, 1985.  I wish there was a support group at that time.  My husband and I did not know what we had done wrong. We had waited 11 years before deciding to conceive and I could not understand why this was happening to us. To all of you who are now carrying an anencephalic child, do not give up this

11. Anencephaly Emily Rose's Story Memorial to Emily Rose, diagnosed with anencephaly at 22 weeks. http://www.geocities.com/tabris02/emilyrose.html

12. Anencephaly Awareness-info On Possible Causes And Future Prevention Information about anencephaly, such as possible causes and future prevention. http://tmsyn.wc.ask.com/r?t=an&s=hb&uid=24312681243126812&sid=343126

13. Anencephaly Information information about the birth defect anencephaly, help for affected parents. http://www.anencephalie-info.org/e/

Anencephaly Information Anencephaly is a congenital birth defect that occurs in approximately one in one thousand pregnancies. Anencephaly is a neural tube defect, just as is spina bifida. Life expectancy for a baby with anencephaly is just a few hours, sometimes a few days at most. As the malformation is usually detected during a pre-natal scan, parents are confronted with a choice between life and death. A choice often made with very little information of what is in store for them. It is with this in mind that we have made the choice to share the stories of the brief, but wonderful lives of babies with anencephaly. We hope that it will be of help to you and impart courage. New ! Join the Anencephaly Network Stories Pictures Frequently asked questions ... Prevention of anencephaly Preparation of the birth of a baby with anencephaly Creating memories of your dying baby Advice for taking pictures of deceased or dying babies Providing support to parents expecting a baby with anencephaly as a midwife Comfort for grieving parents Links about anencephaly Anencephaly Network for more exchange than the reading of personal stories Sitemap Updates what's new here?

14. Anencephaly Information Information about the birth defect anencephaly http://tmsyn.wc.ask.com/r?t=an&s=hb&uid=24312681243126812&sid=343126

15. Medical Information About Anencephaly Medical information about anencephaly. What is anencephaly? anencephaly is a neural tube defect (NTD) in which the brain and cranial vault are grossly http://www.anencephalie-info.org/medical.htm

home Medical information about Anencephaly What is anencephaly? Anencephaly is a neural tube defect (NTD) in which the brain and cranial vault are grossly malformed. A major portion of the brain is reduced or absent, but the hindbrain is present. Facial structures are generally present and appear relatively normal (fig. 1). The cranial lesion is occasionally covered by skin, but, usually, it is not. This defect results when the neural tube fails to close during the third to fourth weeks of development, leading to fetal loss, stillbirth, or neonatal death. Anencephaly, like other forms of NTDs, generally follows a multifactorial pattern of transmission, with interaction of multiple genes as well as environmental factors. Anencephaly can be detected prenatally through maternal serum alpha-fetoprotein screening or ultrasound imaging. Folic acid has been shown to be an efficacious preventive agent that reduces the potential risk of anencephaly and other NTDs by approximately two thirds. fig. 1 diagramm of an anencephalic baby's head, click on the thumbnail to enlarge Pathophysiology: Anencephaly is due to failure of primary neurulation (neurulation is the process which progenitors of the central nervous system are shaped, separated from and brought beneath the epidermis). In the normal human embryo, the neural plate arises approximately 18 days after fertilization (fig 2 and 3). During the fourth week of development, the neural plate invaginates along the embryonic midline to form the neural groove. The neural tube is formed as closure of the neural groove proceeds from the middle of the groove and progresses toward the ends in both directions, with completion between day 24 for the cranial end and day 26 for the caudal end (fig. 4). Disruptions of the normal closure process give rise to NTDs. Anencephaly results from failure of neural tube closure at the cranial end of the developing embryo. Absence of the brain and calvaria may be partial or complete.

16. Pictures Of Babies With Anencephaly Pictures of babies with anencephaly. Click the thumbnails to enlarge each picture This pictures may not be copied or published! Thank you. http://tmsyn.wc.ask.com/r?t=an&s=hb&uid=24312681243126812&sid=343126

17. Anencephaly Information Page: National Institute Of Neurological Disorders And S anencephaly information sheet compiled by the National Institute of Neurological Disorders and Stroke (NINDS). http://www.ninds.nih.gov/disorders/anencephaly/anencephaly.htm

Accessible version Science for the Brain The nation's leading supporter of biomedical research on disorders of the brain and nervous system More about Anencephaly Studies with patients Research literature Press releases Search NINDS... (help) Contact Us My Privacy NINDS is part of the National Institutes of Health You are here: Home Disorders Anencephaly NINDS Anencephaly Information Page Get Web page suited for printing Email this to a friend or colleague Table of Contents (click to jump to sections) What is Anencephaly? Is there any treatment? What is the prognosis? What research is being done? ... Organizations What is Anencephaly? The cause of anencephaly is unknown. Although it is thought that a mother's diet and vitamin intake may play a role, scientists believe that many other factors are also involved. Recent studies have shown that the addition of folic acid (vitamin B9) to the diet of women of childbearing age may significantly reduce the incidence of neural tube defects. Therefore it is recommended that all women of childbearing age consume 0.4 mg of folic acid daily. Is there any treatment?

18. Anencephaly Information Information about the fatal neural tube defect anencephaly. With personal stories of affected parents, advice for preparing the birth and medical information. http://www.anencephalie-info.org/e/index.htm

Anencephaly Information Anencephaly is a congenital birth defect that occurs in approximately one in one thousand pregnancies. Anencephaly is a neural tube defect, just as is spina bifida. Life expectancy for a baby with anencephaly is just a few hours, sometimes a few days at most. As the malformation is usually detected during a pre-natal scan, parents are confronted with a choice between life and death. A choice often made with very little information of what is in store for them. It is with this in mind that we have made the choice to share the stories of the brief, but wonderful lives of babies with anencephaly. We hope that it will be of help to you and impart courage. New ! Join the Anencephaly Network Stories Pictures Frequently asked questions ... Prevention of anencephaly Preparation of the birth of a baby with anencephaly Creating memories of your dying baby Advice for taking pictures of deceased or dying babies Providing support to parents expecting a baby with anencephaly as a midwife Comfort for grieving parents Links about anencephaly Anencephaly Network for more exchange than the reading of personal stories Sitemap Updates what's new here?

19. Jessica's Journey With Anencephaly (a Neural Tube Defect Lost to anencephaly on December 28, 1998. Jessica's story, and photos. http://tmsyn.wc.ask.com/r?t=an&s=hb&uid=24312681243126812&sid=343126

20. ANENCEPHALY SUPPORT FOUNDATION - Home Support group for families who are continuing pregnancies after a diagnosis of anencephaly. http://tmsyn.wc.ask.com/r?t=an&s=hb&uid=24312681243126812&sid=343126

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