21. Prenatal Diagnosis Here is anencephaly, which is one of the more common congenital CNSabnormalities, seen in 0.5 to 1 in 1000 livebirths. Supplementing http://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.

22. Anencephaly Hub Links to information and resources. http://www.genomelink.org/anencephaly

23. CNS Pathology The absence of the fetal cranial vault in anencephaly is shown here. The rateof anencephaly is now less than 1 in 10,000 live births in some places. http://medlib.med.utah.edu/WebPath/CNSHTML/CNS076.html

The absence of the fetal cranial vault in anencephaly is shown here. The incidence of anencephaly, one form of neural tube defect, has been reported to occur as frequently as 1 to 5 in 1000 live births in the past. However, dietary folic acid supplementation by mothers-to-be before and during pregnancy can reduce the incidence of such birth defects. The rate of anencephaly is now less than 1 in 10,000 live births in some places.

24. My Angel Daniel Memorial to this baby lost to anencephaly on January 17, 1992. Daniel's story, and poems. http://www.geocities.com/myangeldaniel/index.htm

Daniel's Story We found out we were pregnant with Daniel in August 1991.We had only been married a few weeks but were over the moon because I had only ever wanted to be a mummy. We spent all our time from then on popping in and out of baby shops looking at things we were going to buy. I was very, very sick and seemed to be spending whole days with my head down the toilet and mentioned it to the doctor who said not to worry because it was quite normal. Apart from that we progressed nicely and had no problems, by 14 weeks even the sickness had stopped. I was really getting into the whole idea of being pregnant by now and spent large amounts of time just talking to my stomach, I wanted my baby to know my voice when it arrived.

25. MyAngelAriel Memorial to baby Ariel Elisabeth Sainte Claire who lived just four hours due to anencephaly. Also a memorial to her sister Catherine Angelica Sainte Claire who was miscarried at three months. Their stories, and poems. http://myangelariel.homestead.com/

E-Mail me : azariahrose@hotmail.com This website is a memorial to my precious Angel, Ariel Elisabeth Sainte Claire, who lived for just four hours, having been born with anencephaly. Ariel became an angel on October 1st 1972 and she will bloom forever in my heart. I have also dedicated a page to her little sister, Catherine Angelica Sainte Claire who was miscarried at three months in February 1973 with, I believe, the same disorder of her beautiful sister. My two little Angels are together in Heaven You are listening to ~Calling All Angels~ Sisters United in Heaven E-Mail me : azariahrose@hotmail.com

26. Policy Statement Infants with anencephaly as Organ Sources Ethical Considerations (RE9253). 1988;82250256 3. Medical Task Force on anencephaly. The infant with anencephaly. http://www.aap.org/policy/04790.html

Policy Statement Pediatrics Volume 89, Number 6 June Part 1, 1992, p 1116-1119 Infants with Anencephaly as Organ Sources: Ethical Considerations (RE9253) AMERICAN ACADEMY OF PEDIATRICS Committee on Bioethics BACKGROUND POTENTIAL APPROACHES TO OBTAINING ORGANS ETHICAL AND LEGAL ISSUES Research Legal Definition of Death Organ Retrieval Issues CONCLUSIONS COMMITTEE ON BIOETHICS, 1991 TO 1992 Arthur F. Kohrman, MD, Chairman Ellen Wright Clayton, JD, MD Joel E. Frader, MD Michael A. Grodin, MD Ian H. Porter, MD Virginia M. Wagner, MD LIAISON REPRESENTATIVES Serge Melancon, MD, Canadian Paediatric Society AAP SECTION LIAISON Anthony Shaw, MD, Section on Surgery CONSULTANT Rebecca Dresser, JD REFERENCES 1. Peabody JL, Emery JR, Ashwal S. Experience with anencephalic infants as prospective organ donors. N Engl J Med. 2. Botkin JR. Anencephalic infants as organ donors. Pediatrics 3. Medical Task Force on Anencephaly. The infant with anencephaly. N Engl J Med. 4. Capron AM. Anencephalic donors: separate the dead from the dying. Hastings Cent Rep.

27. Matthew Bradley Memorial to this child lost to anencephaly on April 21, 1992. Matthew's story, photo, and poems. http://www.angelfire.com/ms/inmemoryofmatthew/index.html

When I look back on those times and the dreams we left behind, I'll be glad because I was blessed to get to have you in my life. When I look back on those days, I'll look and see your face. In my dreams I'll always see you soar above the sky. In my heart there'll always be a place for you for all my life. I'll keep a part of you with me, and everywhere I am...there you'll be. How softly you tiptoed into our world, almost silently. Only a moment you stayed. But what an imprint your tiny footsteps have left upon our hearts. Matthew Bradley was still born on April 21, 1992 at 7:52am. He was 8lbs and 19 1/2 inches long. He is the precious son of Missy and Steven. At 36 weeks of pregnancy, after undergoing a routine ultrasound, it was discovered that Matthew had a birth defect called anencephaly. The term means without a brain. This birth defect is incompatible with life. We were told Matthew could die before, during, or soon after birth. The weeks that followed the news that my baby would die are a blur. I do remember, however

28. Anencephaly Provides and article about anencephaly.Category Health Conditions and Diseases anencephaly......anencephaly is a neural tube defect a disorder involving incomplete developmentof the brain, spinal cord, and/or their protective coverings. anencephaly. 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.

29. Jessica's Journey With Anencephaly (a Neural Tube Defect Incompatible With Life) Lost to anencephaly on December 28, 1998. Jessica's story, and photos. http://www.angelfire.com/mb/jessicasjourney/index.html

Jessica's Journey This web page is a memorial to my daughter, Jessica Marie and all the other precious little babies who have left this world too soon. It is my hope that those who enter here will find comfort and support and will feel a little less alone. Jessica's Journey When I was 17wks pregnant with my 5th child, I learned that she had a condition incompatible with life. She had Anencephaly ( the major portion of her brain and the top part of her skull failed to develop). We left the doctor's office devastated and in shock. What should we do? Our daughter was going to die! Should we terminate? We went home and after much prayer and against the Doctor's recommendation, we decided to continue our pregnancy*. She was, afterall, still, our precious little baby even though she had a "broken head". Many people didn't agree with our decision and couldn't understand our need to hold our baby even if only for a moment. To them she was imperfect, but to me, ah well, a mother's heart can see what the eyes cannot! When I was 8 mths pregnant, I found a new Doctor who was compassionate and understanding of our need to hold our precious little baby. For the first time since we

30. EMedicine - Anencephaly : Article By Robert G Best, PhD anencephaly anencephaly is a neural tube defect (NTD) in which the brain and cranialvault are grossly malformed. anencephaly. Last Updated February 1, 2002, http://www.emedicine.com/neuro/topic639.htm

document.write(''); (advertisement) Home Specialties CME PDA ... Patient Education Articles Images CME Patient Education Advanced Search 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 Robert G Best, PhD, is a member of the following medical societies:

31. Michaela Hope Bucher Lost to anencephaly February 18, 1999. Michaela's story, photos, and poems. http://www.angelfire.com/mn/michaelashope/index.html

Welcome to Michaela's Hope a web site dedicated in memory of our precious angel, Michaela Hope Bucher, and all babies with Anencephaly. Anencephaly is a neural tube defect that causes the brain and skull to stop developing, very early, in fetal development. Anencephaly has no treatment, or cure, and is always fatal. Roughly 1 in every 1,000 pregnancies is affected by this or another neural tube defect, such as Spina Bifida. Consequently, many parents face difficult and heart wrenching decisions regarding their baby's life. They must often make these decisions with very little information about anencephaly itself which is why we have chosen to share our story. In September of 1998 a "routine" ultrasound revealed that our baby's brain and skull had not developed. Not wanting to believe that anything could be wrong with OUR baby, we searced for answers and sought second and third opinions. Doctors explained that Michaela was lacking the upper portion of her skull at about the eyebrow level and that at best, she might live for 48 hours. I was about 20 weeks pregnant at that time and our options were as follows: to have a partial birth abortion, to induce labor, or to continue with the pregnancy. We already had two beautiful healthy little boys at home, ages 4 and 19 months and couldn't imagine life without any of our children, including this one. Faced with the reality that our baby would die, Joey and I did a lot of soul searching, and after several weeks, decided to continue with the pregnancy. The decision gave us peace of mind and allowed us to focus on our baby, and the best way to love her, for however long she might be with us. Having made that decision, we contacted Doctors at Mayo Clinic in Rochester, MN and sought consultation. After a lengthly ultrasound, and discussion with both a perinatologist and a neonatologist, we left Rochester confident in our decision to carry our baby girl to term.

32. EMedicine - Anencephaly : Article Excerpt By: Robert G Best, PhD anencephaly anencephaly is a neural tube defect (NTD) in which the brainand cranial vault are grossly malformed. Excerpt from anencephaly. http://www.emedicine.com/neuro/byname/anencephaly.htm

(advertisement) Excerpt from Anencephaly Please click here to view the full topic text: Anencephaly Background: 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. 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. Pathophysiology: In the normal human embryo, the neural plate arises approximately 18 days after fertilization. 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. 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.

33. Calebs Memorial Memorial to Caleb who was lost to anencephaly on March 30, 1999. http://www.geocities.com/angel33099/

Welcome To Calebs Memorial This Memorial Site is for our baby Caleb, he was diagnosed with Anencephaly when I was 4 months pregnant. On that day we had a very hard decision to make but there was no doubt in my mind that I would try and carry our baby to term. There isn't a decision to me that can be the wrong decision to make, we all love our precious babies very much and will do what we feel is best. This decision is the first hard one we had to make as parents. I have made this site not only in the memory of my little angel, but for other parents who are hurting and need support. I want them to know that they are not alone, we do care. I want them to know that we know and feel their pain, and it's hard. This site is for ALL the Mommy's and Daddy's that have lost a baby to Anencephaly. May God Bless you and give you strength in your time of need. Where would you like to go? SITE MAP Please stay awhile a browse through our pages, I'm sure you'll enjoy your stay. Many thanks to Sassy for this wonderful gift!!! Feel free to place this banner on your website with a link back to this page.

34. Anencephaly anencephaly. Frank H Miller, MD Faye C Laing, MD. June 8, 1994. Presentation. Moderatepolyhydramnios is apparent. Diagnosis. anencephaly. Discussion. 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.

35. In Loving Memory Of Annalise Memorial to this child lost August 14, 1998, to anencephaly and spina bifada. http://www.geocities.com/simonmanz/

On The 9th June, 1998, My world came crashing down around me when I was told by two radiologists that my baby had fatal birth defects and would die. Annalise was diagnosed with neural tube defects including both anencephaly and spina bifida I live in Tasmania, Australia, and all of the personal stories on the internet are written by other Mothers who, as far as I am aware, live in America. By writing of my journey through the weeks after the  diagnosis till Annalise's eventual death, I hope my story will be of encouragement to other mothers carrying their babies to term with anencephaly or any fatal defect. I would support and encourage any mother to go with their mothering instinct to continue the pregnancy. It is worth it to be able to hold your baby in your arms. Parents, especially in Australia who need support or would like to ask any questions can feel free to contact me. I haven't seen a memorial page done from anyone in Australia  who has lost a baby to anencephaly. I apologise if I'm wrong and I'd love to hear from you. If Annalise's birth/death touches another family, as it did ours, her life had purpose. Please continue on to read of my experience. thank you for visiting Annalise's site.

36. The Contact A Family Directory - ANENCEPHALY printer friendly, anencephaly, anencephaly is a maldevelopment of thebrain and skull which occurs in the first weeks of pregnancy. http://www.cafamily.org.uk/Direct/a51.html

printer friendly ANENCEPHALY home more about us in your area conditions information ... how you can help search this site Anencephaly is a maldevelopment of the brain and skull which occurs in the first weeks of pregnancy. The upper part of the brain and the overlying skull cap are absent although the lower part of the brain and the base of the skull do develop to some extent. Female babies are more commonly affected than males. This abnormality occurs in about 1:1,000 pregnancies. Its incidence is highest in those areas where spina bifida and hydrocephalus are common and, in fact, anencephaly and spina bifida can be present in the same infant. If the pregnancy does go to full term the baby is either still born or dies shortly after birth. Understandably most parents opt for termination of pregnancy once the diagnosis has been made. During subsequent pregnancies scanning is carried out to make sure the abnormality has not reoccurred. Inheritance patterns The risk of anencephaly and spina bifida occurring is 1:50 if there has been one previously affected pregnancy but the risk increases to 1:5 if there have been two previously affected pregnancies. It is therefore essential that the mother takes a folic acid supplement before conception and for the first twelve weeks of any subsequent pregnancy. Pre-natal diagnosis Anencephaly can be detected by ultrasound scans as early as the 14th week of the pregnancy if the baby is lying in a favourable position. Most cases are detected by the 20th week of pregnancy. If further confirmation of the diagnosis is needed amniocentesis is carried out and the level of the alpha fetoprotein in the amniotic fluid can be measured. The level is abnormally high in this condition.

37. For Hope. . .Index Memorial to this daughter who died four hours after birth due to anencephaly. Hope's story, photos, and poems. http://www.angelfire.com/in2/forhope6396/

I cannot say, and I will not say That she is dead-she is just away! With a cheery smile, and the wave of a hand, She has wandered into an unknown land, And left us dreaming how very fair It needs must be, since she lingers there; So think of her faring on, as dear In the love of there as the love of here; Think of her the same, I say: She is not dead-she is just away! ~ James Whitcomb Riley ~ In a baby castle just beyond my eye, My baby plays with angel toys that money cannot buy. Who am I to wish her back into this world of strife? No, play on my baby, you have eternal life. At night when all is silent and sleep forsakes my eyes, I'll hear her tiny footsteps come running to my side. Her little hands caress me so tenderly and sweet, I'll breathe a prayer and close my eyes, and embrace her in my sleep. Now I have a treasure that I rate above all other. I have known true glory; I am STILL her mother. ~ Author Unknown ~ This is the story of our beloved daughter, Hope Christine. Her time here on earth lasted a painfully short time, but her time in our hearts will last an eternity. May her story touch your lives and hearts in the same manner as she has forever changed ours. Life does go on, though it is never the same. I honestly don’t think I’ll ever view anything in the same light as before, but that can’t be all bad. Once the “impossible” happens to you, you never have quite the same light-heartedness again. In addition to her big brother, Hope now has a beautiful, healthy baby sister named Leila Faith. I am so blessed by all of my children, and the very different stories they have to tell. Austin is my feet always planted firmly on the ground, Leila is my heart remembering to look for rainbows and Hope is my head forever in the clouds...and couldn't we ALL use a little of that once in a while?

38. MEDLINEplus Medical Encyclopedia: Anencephaly anencephaly. When the upper portion of the neural tube fails to close,anencephaly results, however, the specific cause is unknown. http://www.nlm.nih.gov/medlineplus/ency/article/001580.htm

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 The absence of both the skull and cerebral portions of the brain. Causes, incidence, and risk factors Return to top Anencephaly is a "neural tube defect" (a defect occurring early in fetal development that damages the primitive tissue which will become the brain and spinal cord). When the upper portion of the neural tube fails to close, anencephaly results, however, the specific cause is unknown. Findings suggest that it may be related to environmental toxins ; however, no absolute connections have been made. Also, low plasma levels of folic acid have been implicated in contributing to neural tube defects. The incidence may reach 3.6 to 4.6 out of 10,000 births. The exact incidence is unknown, as most of these infants probably spontaneously abort. Risk factors include having a previous pregnancy with anencephaly. Nutrition is thought to play an important part in the development of neural tube defects of which anencephaly is only one. The specific nutrition risk factor is thought to be low serum levels of folic acid.

39. Loren Memorial to this son lost September 20, 1999, to anencephaly. Loren's story, photo, and poems. http://www.geocities.com/simonmanz/friend.html

The story of Loren Joseph My pregnancy was uneventful from the start...no morning sickness, felt great the whole time, and we were so thrilled to be welcoming another new life. On Friday 9/17 at the 34 week midwife appointment, all was well except for the first time I had too much amniotic fluid (polyhydramnios) and thus it was tough to palpate the baby. Midwife Carol made some dietary recommendations and we planned to meet again in one week. We arrived at Swedish after getting priority loading on the ferry, and after meeting perinatologist Dr. Chuck Petty, I received a dose of terbutaline to try and stop contractions - unsuccessful. I was so thankful for Carol's presence! I was moved to antepartum, where the nurse tried several times with difficulty to get Loren's heartbeat to pick up on the fetal monitor. Dr. Petty planned an ultrasound AND an amniocentesis as he said many times pre-term labor is caused by intra-uterine infections, which the amnio would pick up. I was very hesitant about having one done, but he advised me it would be best, so I agreed. The ultrasound tech had lovely long hair and a grumpy attitude. She scanned my belly then told me we were having a boy! What pleasure I felt...I had been correct all along in my intuition! She left the room soon after beginning the scan, which I didn't even notice as I was still excited about the gender. The radiologist came in and he started scanning, asking me to turn way over on my left side as he "could not get a

40. Www.nlm.nih.gov/cgi/mesh/2K/MB_cgi?term=Anencephaly Similar pages anencephalyNeurological. anencephaly. anencephaly is a neural tube birth defect. anencephalyWhat is anencephaly? anencephaly is a neural tube birth defect. http://www.nlm.nih.gov/cgi/mesh/2K/MB_cgi?term=Anencephaly

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