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 Net anencephaly Net. anencephaly n a defect in brain development resulting in small or missing brain hemispheres. anencephaly Support and Information. 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. 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 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.

3. Anencephaly anencephaly. DEFINITION A neural tube defect affecting the skull resulting in a large defect of the anencephaly arises from an embryonic defect occurring prior to day 26 which http://www.angelfire.com/mn/michaelashope/anencephalyfact.html

var cm_role = "live" var cm_host = "angelfire.lycos.com" var cm_taxid = "/memberembedded" 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 *anencephaly arises from an embryonic defect occurring prior to day 26 which prevents the closure of the anterior neuropore - the frequency of anencephaly has decreased during past 2 decades - CNS findings: both cerebral hemispheres and thus the spinal cord pyramidal tracts are absent absence of the cerebellum residue of the brainstem usually present hypoplastic pituitary gland the rudimentary brain remaining consists of portions of con-nective tissue, vessels, and neuroglia

4. 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

var cm_role = "live" var cm_host = "angelfire.lycos.com" var cm_taxid = "/memberembedded" 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)

5. Anencephaly Page http://www.geocities.com/HotSprings/Spa/2147/anencephaly.html

Anencephaly Page Anencephaly: some brief explanation Questions about causes Ethical issues Experiences and Support Some brief explanation: Anencephaly is a condition in which the embryologic closure of the neural tube never completes, leaving the embryo to develop without the upper portion of its skull. These embryos sometimes continue to develop into the fetal stage and may even survive to be born alive, but with upper cranium and scalp missing and the brain open to the outer world. These babies may survive outside the womb for varying amounts of time, anywhere between minutes and weeks. Although the condition is always fatal and there are no techniques to correct the problem, families may still be able to find joy as well as sadness in whatever time they share with their baby. Many years ago, I had the experience of supporting a mother through the unexpected diagnosis of anencephaly (by ultrasound) and the experience of her pregnancy as well as the delivery of her child. At the time, I had to search high and low to find information that would not only describe the physical facts and medical concerns, but also provide accounts from other parents about the emotional experience of anencephaly. I believe that the internet is a powerful resource that can bring together many differing sources of information (which, admittedly, may often conflict with each other) so that parents and healthcare providers can become as informed as possible when they are facing such situations. If you know of other sites on this subject, please email me below.

6. NINDS Anencephaly Information Page anencephaly information sheet compiled by the National Institute of Neurological Disorders and Stroke (NINDS). More about anencephaly, Studies with patients, http://www.ninds.nih.gov/health_and_medical/disorders/anencephaly_doc.htm

National Institute of Neurological Disorders and Stroke Accessible version Science for the Brain The nation's leading supporter of biomedical research on disorders of the brain and nervous system Browse all disorders Browse all health organizations 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 NINDS Anencephaly Information Page Reviewed 05-27-2003 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? Anencephaly is a defect in the closure of the neural tube during fetal development. The neural tube is a narrow channel that folds and closes between the 3rd and 4th weeks of pregnancy to form the brain and spinal cord of the embryo. Anencephaly occurs when the "cephalic" or head end of the neural tube fails to close, resulting in the absence of a major portion of the brain, skull, and scalp. Infants with this disorder are born without a forebrain (the front part of the brain) and a cerebrum (the thinking and coordinating part of the brain). The remaining brain tissue is often exposednot covered by bone or skin. A baby born with anencephaly is usually blind, deaf, unconscious, and unable to feel pain. Although some individuals with anencephaly may be born with a rudimentary brain stem, the lack of a functioning cerebrum permanently rules out the possibility of ever gaining consciousness. Reflex actions such as breathing and responses to sound or touch may occur.

7. Anencephaly anencephaly. anencephaly is a neural tube defect (a disorder involving incomplete development of the Although some individuals with anencephaly may be born with a rudimentary brain http://healthlink.mcw.edu/article/921383913.html

Search Articles: search tips Please Take the HealthLink Survey Email this article Print this article Find related articles: By topic: Neurology By keywords: Receive Health Link via email! Subscribe now >> Anencephaly Anencephaly is a neural tube defect (a disorder involving incomplete development of the brain, spinal cord, and/or their protective coverings). The neural tube is a narrow sheath that folds and closes between the 3rd and 4th weeks of pregnancy to form the brain and spinal cord of the embryo. Anencephaly occurs when the "cephalic" or head end of the neural tube fails to close, resulting in the absence of a major portion of the brain, skull, and scalp. Infants with this disorder are born without both a forebrain (the front part of the brain) and a cerebrum (the thinking and coordinating area of the brain). The remaining brain tissue is often exposednot covered by bone or skin. The infant is usually blind, deaf, unconscious, and unable to feel pain. Although some individuals with anencephaly may be born with a rudimentary brain stem, the lack of a functioning cerebrum permanently rules out the possibility of ever gaining consciousness. Reflex actions such as respiration (breathing) and responses to sound or touch may occur. The cause of anencephaly is unknown. Although it is believed that the mother’s diet and vitamin intake may play a role, scientists believe that many other factors are also involved.

8. 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.

9. Anencephaly / Family Village Also see Bereavement Support. Who to Contact. Where to Go to Chat with Others. Learn More About It. Personal Accounts. Web Sites. Search Google for "anencephaly" Who to Contact. anencephaly Support http://www.familyvillage.wisc.edu/lib_anen.htm

Anencephaly Also see: Bereavement Support Who to Contact Where to Go to Chat with Others Learn More About It ... Search Google for "Anencephaly" Who to Contact Anencephaly Support Foundation 30827 Sifton Spring, Texas 77386 Email: asf@asfhelp.com Web: http://www.asfhelp.com/ASF_files/asf_home.htm Our support group consists of families who have had a baby born with anencephaly. All of us chose to continue our pregnancies in the face of this devastating diagnosis. Our purpose is to help parents who wish to continue these pregnancies, and help examine the reasons why we believe carrying a child with anencephaly can be a fulfilling decision. We're here to share some personal stories, medical and causation information, support group resources, and other information. Where to Go to Chat with Others Anencephaly This is was established for family members, friends, educators and medical professionals interested in sharing information and/or support for parents of affected children. Blessings from Above A Christian based support club for parents newly diagnosed and carrying anencephalic babies, or who have carried anencephalic babies to term. Learn More About It NINDS Anencephaly Information Page Anencephaly From the National Organization for Rare Disorders, Inc. (NORD)

10. Anencephaly anencephaly. Frank H Miller, MD. Faye C Laing, MD. June 8, 1994. Presentation. In this case from 1991, a 19week fetus with elevated alpha-fetoprotein is scanned for amniocentesis. Imaging Findings . http://brighamrad.harvard.edu/Cases/bwh/hcache/37/full.html

Anencephaly Frank H Miller, MD Faye C Laing, MD June 8, 1994 Presentation In this case from 1991, a 19-week fetus with elevated alpha-fetoprotein is scanned for amniocentesis. Imaging Findings Ultrasound Examination Ultrasound examination indicates that the cranium and brain are not formed. The calvarium is not visible above the orbits. Moderate polyhydramnios is apparent. Diagnosis Anencephaly Discussion After 12-13 gestational weeks, the normal fetal brain should be readily visible on transabdominal sonographic examination. Anencephaly will result if there is failure of complete fusion of the neural tube. This is the most common and most severe form of open neural tube defect and has a 5% rate of recurrence in subsequent pregnancies. Ultrasound findings include absence of the cranium cephalad to the orbits and bulging eyes ("frog-like" appearance). Polyhydramnios, which is attributed to insufficient fetal swallowing, occurs in 40-50% of cases after 26 weeks gestational age. References 1. Filly RA. Ultrasound evaluation of the fetal neural axis. In: Callen P, editor. Ultrasonography in obstetrics and gynecology. 3rd ed. Philadelphia: Saunders, 1994:219-21.

11. EMedicine - Anencephaly : Article By Robert G Best, PhD anencephaly anencephaly is a neural tube defect (NTD) in which the brain and cranial vault are grossly malformed. The cerebrum and cerebellum are reduced or absent, but the hindbrain is present http://www.emedicine.com/neuro/topic639.htm

(advertisement) Home Specialties Resource Centers CME ... Patient Education Articles Images CME Patient Education Advanced Search Consumer Health Link to this site Back to: eMedicine Specialties Neurology Pediatric Neurology Anencephaly Last Updated: February 1, 2002 Rate this Article Email to a Colleague AUTHOR INFORMATION Section 1 of 10 Author Information Introduction Clinical Differentials ... Bibliography Author: Robert G Best, PhD , Director, Professor, Department of Obstetrics and Gynecology, Division of Genetics, University of South Carolina School of Medicine Coauthor(s): James Stallworth, MD , Program Director, Associate Professor, Department of Pediatrics, Palmetto Richland Memorial Hospital, University of South Carolina Edgar O Horger III, MD , Former Director, Division of Ultrasonography, Former EJ Dennis Professor, Department of Obstetrics and Gynecology, Palmetto Richland Memorial Hospital, University of South Carolina Nicholas Lorenzo, MD , eMedicine Chief Publishing Officer, Chief Editor, eMedicine Neurology; Consulting Staff, Neurology Specialists and Consultants

12. Infos Anencephalie Translate this page une malformation congenitale fatale - informationen ueber anencephalie, einer angeborenen, fatalen missbildung - the story of Anouk, a baby with anencephaly. http://www.anencephalie-info.org/

Anencephalie-info Willkommen! Welcome! Anencephalie (auch Anenzephalie, Anencephalus oder Anenzephalus genannt) ist eine angeborene Missbildung, die in den meisten Fällen durch die pränatale Diagnostik entdeckt wird. Sie gehört zu den Neuralrohrdefekten, wie auch die Spina bifida. Viele anencephale Baby's überleben die Geburt nicht, ansonsten liegt die Lebenserwartung eines betroffenen Baby's bei wenigen Stunden oder Tagen. Auf dieser Homepage finden Sie Berichte von Eltern, die alle ihr anecephales Baby trotz der schlimmen Diagnose bis zum Entbindungstermin ausgetragen haben. Ausserdem habe ich medizinische Informationen, Ratschläge zur Vorbereitung der Entbindung und des Lebens mit einem anencephalen Baby und diverse andere Themen zusammengetragen. Damit möchte ich versuchen, Betroffenen und deren Mitmenschen während oder nach der schwierigen Zeit mit ihrem anencephalen Baby zu helfen und Mut zu geben. Um die deutsche Homepage zu öffnen, klicken Sie bitte

13. Anencephaly MORAL PRINCIPLES CONCERNING INFANTS WITH anencephaly. Most infants who have anencephaly do not survive for more than a few days after birth. 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.

14. MedlinePlus Medical Encyclopedia: Anencephaly anencephaly is a neural tube defect that occurs early in the development of an unborn baby the brain and spinal cord. anencephaly results when the upper portion of the neural http://www.nlm.nih.gov/medlineplus/ency/article/001580.htm

@import url(http://www.nlm.nih.gov/medlineplus/images/advanced.css); Skip navigation Medical Encyclopedia Other encyclopedia topics: A-Ag Ah-Ap Aq-Az B-Bk ... Z Anencephaly Contents of this page: Illustrations Alternative names Definition Causes, incidence, and risk factors ... Prevention Illustrations Ultrasound, normal fetus - ventricles of brain Alternative names Return to top Aprosencephaly with open cranium Definition Return to top Anencephaly is the absence of a large part of the brain and the skull. Causes, incidence, and risk factors Return to top Anencephaly is a neural tube defect that occurs early in the development of an unborn baby. Neural tube defects involve the tissue that grows into the brain and spinal cord. Anencephaly results when the upper portion of the neural tube fails to close. Why this happens is not known. Possible causes include environmental toxins and low intake of folic acid during pregnancy. Anencephaly occurs in about 4 out of 10,000 births. The exact number is unknown, because many of these pregnancies spontaneously abort. Having one anencephalic infant increases the risk of having another child with neural tube defects. Low intake of folic acid during pregnancy can also contribute to neural tube defects such as anencephaly.

15. Anencephaly Information anencephaly Information. What is anencephaly? anencephaly is a neural may occur. The cause of anencephaly is unknown. Although it http://www.anencephaly.net/anencephaly.html

Anencephaly Information What is Anencephaly? Is there any treatment? There is no cure or standard treatment for anencephaly. Treatment is supportive. What is the prognosis? The prognosis for individuals with anencephaly is extremely poor. If the infant is not stillborn, then he or she will usually die within a few hours or days after birth. [Editor's Note: The unborn child may have been diagnosised as having anencephaly, but be born with a less severe form of the disease, allowing the infant to live for years or more] What research is being done? The The National Institute of Neurological Disorders and Stroke conducts and supports a wide range of studies that explore the complex mechanisms of normal brain development. The knowledge gained from these fundamental studies provides the foundation for understanding how this process can go awry and, thus, offers hope for new means to treat and prevent congenital brain disorders including neural tube defects such as anencephaly. Selected references Berkow, R (ed).

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

Emily Rose's Story by Jane, her mother When I became pregnant with my second child, I prayed that everything would go differently this time. I should have been more specific about what I asked for, because the first time, I left the hospital with a living child. We wanted this pregnancy. I did all the "right" things. Because we use Natural Family Planning, we knew pretty much when we conceived. In fact, I went to the doctor to get tested too soon! I was sure because I was already having symptomsthe most welcome one the nonstop dreams I'd had every night of the nine months of my first pregnancy. The practice which had delivered my first baby had closed, thankfully, but the idiot who had done the delivery had moved to the only other area practice my insurance company paid. I didn't want to get that jerk again. That was when I started saying I wanted everything to go differently. I read different books, and I changed my attitudes about prenatal care and testing. Because of the high false-positive rate, we didn't have an alpha-fetoprotein test performed, although we would have an ultrasound done. After all, an AFP test doesn't tell you about things that are correctable, but an ultrasound theoretically can. That new practice was... Well, we changed insurance companies so I could ditch them. But then I didn't change practices right away. It took their refusal to test me for anemia (despite symptoms of anemia and a personal history of anemia) for me to finally walk out on them. It was only four days before the ultrasound was scheduled, but I no longer cared. The timing was an act of God.

17. Anencephaly Page http://www.geocities.com/hotsprings/spa/2147/anencephaly.html

Anencephaly Page Anencephaly: some brief explanation Questions about causes Ethical issues Experiences and Support Some brief explanation: Anencephaly is a condition in which the embryologic closure of the neural tube never completes, leaving the embryo to develop without the upper portion of its skull. These embryos sometimes continue to develop into the fetal stage and may even survive to be born alive, but with upper cranium and scalp missing and the brain open to the outer world. These babies may survive outside the womb for varying amounts of time, anywhere between minutes and weeks. Although the condition is always fatal and there are no techniques to correct the problem, families may still be able to find joy as well as sadness in whatever time they share with their baby. Many years ago, I had the experience of supporting a mother through the unexpected diagnosis of anencephaly (by ultrasound) and the experience of her pregnancy as well as the delivery of her child. At the time, I had to search high and low to find information that would not only describe the physical facts and medical concerns, but also provide accounts from other parents about the emotional experience of anencephaly. I believe that the internet is a powerful resource that can bring together many differing sources of information (which, admittedly, may often conflict with each other) so that parents and healthcare providers can become as informed as possible when they are facing such situations. If you know of other sites on this subject, please email me below.

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 an anencephalic baby 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 lifes of anencephalic babies. We hope that it will be of help to you and impart courage. Stories of the lifes of anencephalic infants: Anouk Anna and Tess (twins) Ira Jerry Eliah Loren Lucas Adam ... Matthew and Emily (twins) Michael Andrew Pictures of anencephalic babies FAQs about anencephaly What is a neural tube defect Prevention of anencephaly Creating memories of your dying baby Advice for taking pictures of deceased or dying babies Providing support to parents expecting an anencephalic baby as a midwife Comfort for grieving parents Links about anencephaly Sitemap e-mail: webmaster@anencephalie-info.org

19. Jasmine Faith, Our Treasure In Heaven The story of my daughter, Jasmine, who was prenatally diagnosed with anencephaly. http://www.geocities.com/hopefulwomen/JasmineFaith.html

Memorial page and graphics made by: Jasmine's Mommy, Michelle Midi playing is: Hello-Goodbye by Michael W. Smith. Respectfully used with permission from Yeshua's Ministry This song was played at Jasmine's memorial. I discovered I was pregnant with our second child almost immediately. I think I sensed when I became pregnant with her. I told Rob, my husband and he said, "Already!" A home pregnancy confirmed my suspicions. At the time, our daughter, Jordan was just turned 2. I couldn't wait to give her a sibling. I dreamed of having a girl, another sweet girl to raise and love. I dreamed of having a boy, a miniature of my husband. Either way, I just wanted a healthy baby. Right from the start though, I felt there was something different about this pregnancy. Instead of gaining weight in the first trimester, I was losing weight. The midwife at the practice I went to did not seem worried, so I put it in the back of my mind. My due date was set for June 26, 1999. Once I made it through the first trimester, what could go wrong? I was so innocent. The next morning, I woke early and went downstairs. I fell to my knees and cried out to God. I said, "This is too much to bear, Lord!" He gave me two scriptures:

20. Prenatal Diagnosis Here is anencephaly, which is one of the more common congenital CNS abnormalities, seen in 0.5 to 1 in 1000 livebirths http://www-medlib.med.utah.edu/WebPath/TUTORIAL/PRENATAL/PREN014.html

Here is anencephaly, which is one of the more common congenital CNS abnormalities, seen in 0.5 to 1 in 1000 livebirths. Supplementing the maternal diet (before and during pregnancy) with folate will greatly reduce the chance for such defects.

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