1. ASF & CEM Title Page Non-profit support organization with information, personal stories, and resources for families, parents, Category Health Conditions and Diseases anencephaly......anencephaly SUPPORT FOUNDATION. Welcome to the home page of the anencephaly SupportFoundation (ASF). Copyright 19972002. anencephaly Support Foundation. http://www.asfhelp.com/

ANENCEPHALY SUPPORT FOUNDATION Welcome to the home page of the Anencephaly Support Foundation (ASF). We are a non-profit foundation dedicated to serving parents, families and the educational and medical communities. We offer the following: Information, personal stories, and medical articles regarding the neural tube defect of anencephaly Support and encouragement to parents who have chosen to carry an anencephalic pregnancy to term Information regarding possible causations, prevention theories, and support group referrals Click on the logo to enter ASF's web site CONTEMPORARY ETHICS MEDIA " The Anencephalic: A Suitable Donor? " This hour long video examines the various major ethical issues surrounding whether anencephalic infants should be used as organ sources for terminally ill children. Thank you for visiting.

2. Anencephaly Net anencephaly is a neural tube defect a disorder involving incomplete development of the brain, spinal cord, and/or their protective coverings. 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 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

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) Diagnosis: Diagnosis is usually made by the AFP (alpha-fetoprotein) test at 16 to 18 wks and then confirmed by follow up level 2 ultrasound. Normally, a detectable and predictable amount of this protein crosses the placenta and enters the bloodstream.The alpha-fetoprotein test detects amounts of this protein, which is produced by the unborn babies liver, and measures the amount in the mother's blood. But if the fetus has an abnormal opening in its spine (spina bifida) or head (anencephaly), or an abdominal wall defect, more alpha-fetoprotein may leak out which will cause the AFP test to be elevated. Some cases of anencephaly have been diagnosed, via ultrasound, as early as 10 1/2 wks . It has been shown that a transvaginal ultrasound is better at diagnosing anencephaly before 16 wks than the standard abdominal ultrasound.

4. NINDS Anencephaly Information Page Information sheet compiled by NINDS, the National Institute of Neurological Disorders and Stroke.Category Health Conditions and Diseases anencephaly......anencephaly information sheet compiled by the National Institute of NeurologicalDisorders 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 07-01-2001 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? 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. What research is being done?

5. 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 Reaffirmed February 2000, Revision in process March 2002 Index of position statements from the Bioethics Committee Reprints of this position statement are available from the Canadian Paediatric Society, 100-2204 Walkley Road, Ottawa ON K1G 4G8; phone: (613) 526-9397; fax: (613) 526-3332. 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. Ethical and legal principles require that the donor be pronounced dead by at least one physician who is not associated with the potential recipient or his or her family. Death may be pronounced on the basis of conventional grounds or grounds of brain death. The currently acceptable definition of brain death in Canada is that described by the CMA.

6. Anencephaly 1. Background. *anencephaly arises from an embryonic defect occurring prior to day 26 which prevents the closure of the http://www.angelfire.com/mn/michaelashope/anencephalyfact.html

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

7. Anencephaly Page Brief overview describing this birth defect, the causes, ethical issues, and support resources. 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.

8. Anencephaly / Family Village Who to Contact 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. anencephaly. Also see Bereavement 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)

9. Anencephaly Jessicas Journey Our precious little baby had a birth defect called anencephaly (the major portionof her brain and the top part of her skull had failed to develop). 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.

10. Anencephaly Support Foundation - Home Page Resources. anencephaly SUPPORT FOUNDATION. Welcome to the home page of ASF. Oursupport group consists of families who have had a baby born with anencephaly. http://www.asfhelp.com/ASF_files/asf_home.htm

Resources ANENCEPHALY SUPPORT FOUNDATION Personal Stories Heartwarming and encouraging stories and pictures from families who have carried to term. Support Group Information A listing of organizations and groups to help you through this difficult time. Medical and Causation Information Current research on many topics, including folic acid updates, environmental studies, and descriptive articles. Ethical Issues: Currently this section focuses on the debate over harvesting the organs of babies with anencephaly. Articles and references for students and researchers and any other interested parties. Miscellaneous Information Some other items we’ve collected that might be helpful. Welcome to the home page of ASF. 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.

11. 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.

12. ANENCEPHALY Pediatric Database (PEDBASE); Discipline CNS; Last Updated 5/21/94 anencephaly.DEFINITION A CLINICAL FEATURES 1. anencephaly. distinctive http://www.icondata.com/health/pedbase/files/ANENCEPH.HTM

Pediatric Database (PEDBASE) Discipline: CNS Last Updated: 5/21/94 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 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

13. Anencephaly Information anencephaly Information. What is anencephaly? anencephaly is a neural mayoccur. 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. 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). The Merck Manual of Diagnosis and Therapy: Specialties. vol. II Bradley, W, et al (eds). Neurology in Clinical Practice: The Neurological Disorders. vol. II , 2nd edition, Butterworth-Heinemann, Boston, p. 1473 (1996). Lemire, R, and Siebert, J.

14. 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:

15. (Angel Austin's Site) Poetry, and photos of this child who died May 2, 2002, of anencephaly. http://www.geocities.com/austinspage2002/

As you sleep she watches Comfort in your rest Her hands are softly touching

16. WebRing: Hub Memorial pages to children lost to anencephaly. http://s.webring.com/hub?ring=jessica

17. Folic Acid Campaign, NCBDDD,CDC bodies before pregnancy, this vitamin can decrease the risk for neural tube defects(NTDs), which are birth defects of the baby's brain (anencephaly) or spine http://www.cdc.gov/ncbddd/folicacid/

Folic Acid Home National Campaign Health Professionals Resources ... Materials from Others Why Folic Acid is So Important Folic acid, also known as folate, is a B-vitamin that can be found in some enriched foods and vitamin pills. If women have enough of it in their bodies before pregnancy, this vitamin can decrease the risk for neural tube defects (NTDs), which are birth defects of the baby's brain (anencephaly) or spine (spina bifida). For many women, an easy way to be sure you're getting enough folic acid is to take a vitamin with folic acid in it. The U.S. Public Health Service recommends that all women who could possibly become pregnant get 400 micrograms (or 0.4 mg) of folic acid every day. This could prevent up to 70% of some types of serious birth defects. But to do this, women need folic acid before they get pregnant. That's why you should always get enough folic acid every day even if you're not thinking about a baby any time soon. Folic acid has been added to some foods, such as enriched breads, pastas, rice, and cereals. A few cereals have 100 percent of the folic acid you need. No one expects an unplanned pregnancy. But they happen - every day. In fact, about half of all pregnancies are not planned. That's why you should get enough folic acid every day if there's any chance you could get pregnant. Because by the time you know you're pregnant, your baby's brain and spine are already formed.

18. Anencephaly Provides and article about anencephaly. http://www.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.

19. Surveillance For Anencephaly And Spina Bifida And The Impact Of Prenatal Diagnos Surveillance for anencephaly and Spina Bifida and the Impact of PrenatalDiagnosis United States, 19851994. Janet D. Cragan, MD http://www.cdc.gov/mmwr/preview/mmwrhtml/00038567.htm

Surveillance for Anencephaly and Spina Bifida and the Impact of Prenatal Diagnosis United States, 1985-1994 Janet D. Cragan, M.D. Helen E. Roberts, M.D. Larry D. Edmonds, M.S.P.H. Muin J. Khoury, M.D., Ph.D. Division of Birth Defects and Developmental Disabilities National Center for Environmental Health Russell S. Kirby, Ph.D., M.S. Arkansas Reproductive Health Monitoring System Gary M. Shaw, Dr.P.H. Ellen M. Velie, M.P.H. California Birth Defects Monitoring Program Ruth D. Merz, M.S. Mathias B. Forrester, B.S. Hawaii Birth Defects Monitoring Program Roger A. Williamson, M.D. Diane S. Krishnamurti, M.S. Iowa Birth Defects Registry and the University of Iowa Roger E. Stevenson, M.D. Jane H. Dean, R.N. Greenwood Genetic Center Abstract Problem/Condition: The reported prevalence of anencephaly and spina bifida in the United States has steadily declined since the late 1960s. During this time, the ability to diagnose these defects prenatally has progressed rapidly. Many U.S. birth defects surveillance systems ascertain defects only among live-born infants or among infants and fetuses beyond a certain gestational age, thus excluding defects among pregnancies prenatally diagnosed as being affected by a neural tube defect (NTD) and electively terminated before the gestational age limit. The impact of prenatal diagnosis and subsequent pregnancy termination on the reported prevalence of anencephaly and spina bifida in the United States has not been well established. However, assessment of this impact is crucial to the use of surveillance data to monitor trends in the occurrence of NTDs and the effectiveness of interventions for these defects (e.g., increased consumption of folic acid).

20. MY ANGEL LILY FAITH Memorial to this baby lost to anencephaly. The story of her life, photos, and poems. http://www.geocities.com/myangellilyfaith/index.html

Ecclesiastes 3:1-8 There is a time for everything, and a season for every activity under heaven: A time to be born and a time to die, A time to plant and a time to uproot, A time to kill and a time to heal, A time to tear down and a time to build, A time to weep and a time to laugh, A time to mourn and a time to dance, A time to scatter stones and a time to gather them, A time to embrace and a time to refrain, A time to search and a time to give up, A time to keep and a time to throw away, A time to tear and a time to mend, A time to be silent and a time to speak, A time to love and a time to hate, A time for war and a time for peace. Welcome to my angel Lily Faith's website. I have built this website to share my angel with the world, and also to let other mothers read about anencephaly. My baby was born with this condition. I hope other mothers who have had a baby with anencephaly find comfort in my website, if only by knowing they are not alone..... You are listening to ~The Dance~ Our Angel Lily Faith, born and flew to Heaven on 12-05-2001 Website first built January 22nd 2002 I want to say an extra special thanks to Dawn for helping me to create this site for my beautiful daughter. I couldn't have done this without her knowledge or loving attitude. Thanks Dawn!!!

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