Anencephaly Information

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The Anencephaly Information pages are also available in Spanish, German, French, Dutch, Portuguese and Italian

 

Links about anencephaly:

 

- Stories about babies with anencephaly
- Online support groups / helpful websites
- Resources to help preparing your baby's birth
- Ethical issues
- Medical information about anencephaly
- Information about cephalic disorders
- Prevention of anencephaly
- Babies with anencephaly as organ donors?
- Loss in multiples
- Support for grandparents
- Advice for caregivers
- Support after the loss of a baby
- Pregnancy and parenting after loss
- About pictures and keepsakes
- others



Stories about babies with anencephaly:



* The Life of River Creedance, a claymation / movie http://zed.cbc.ca/go.ZeD?CONTENT_ID=151959&page=content
* Video of Gabriel James http://www.youtube.com/watch?v=gfGbh_Z45w0


* Alexa http://www.geocities.com/ALEXABRIANNA
* Amanda Marie http://www.anencephalie-info.org/e/AmandaMarie.htm
* Amy Lynn http://www.healingheart.net/my_little_angel.htm
* Anastasia http://www.prenatalpartnersforlife.org/Stories/StoriesAnencephalyAnastasia.htm

* Anouk http://www.anencephalie-info.org/e/anouk.htm
* Annalise http://www.geocities.com/simonmanz
* Apollo http://www.anencephalydayton.org/mommysstory.html
* Ariel Elisabeth http://myangelariel.homestead.com/ArielsStory.html
* Aryana http://www.anencephalie-info.org/e/aryana.htm
* Austin http://www.geocities.com/austinspage2002
* Ava Grace  http://www.avagracehorne.com/AvaGracesStory.html 

* Benedict Oliver http://www.geocities.com/teesieau/story.html
* Brandon Bobola http://www.geocities.com/brandonbobola
* Camdyn http://www.anencephalie-info.org/e/camdyn.htm
* Caleb http://www.geocities.com/angel33099
* Ceilidh Marie http://www.freewebs.com/ceilidh_marie/ourstory.htm
* Charlotte Mary http://www.geocities.com/teesieau/charlottemary.html
* Christiana http://www.harpercollinsreligious.com.au/books/extracts/friends_of_footprints.htm
* Christianna http://members.tripod.com/ginas_home/our_daughter_our_angel.htm
* Colby http://www.priestsforlife.org/news/boc02-10-18leaven.htm
* Daniel Ray http://www.geocities.com/mary_blueyed/DanielRay
* Emily Rose http://www.geocities.com/tabris02
* Faith Aminah http://faithaminah.tripod.com
* Faith Lynn http://www.geocities.com/laurathecarrot71799
* Gabriel http://www.geocities.com/iris_suzette/story.html
* Gabriel Aaron http://www.geocities.com/anencephalygabriel%40sbcglobal.net/index.html
* Gabriel John http://www.anencephalie-info.org/e/gabriel.htm 

* Grace York http://www.thecatholicspirit.com/archives.php?article=4857
* Gracie Jo  http://www.alexandrashouse.com/resource/gracie_letter.pdf 

* Gracie Lynn http://www.anencephalie-info.org/e/gracie.htm 

* Hope Marie http://www.anencephalie-info.org/e/hopemarie.htm
* Ira http://www.anencephalie-info.org/e/Ira.htm
* Isabel Eve http://www.anencephalie-info.org/e/isabel.htm 

* Jaden Thien http://www.anencephalie-info.org/e/jaden.htm 

* James http://www.anencephalie-info.org/e/james.htm
* Jasmine Faith http://www.geocities.com/hopefulwomen/JasmineFaith.html
* Jenna http://web.archive.org/web/20001207230600/http://www.only4families.com/jenna/index.html
* Jenna Grace http://www.anencephalie-info.org/e/jennagrace.htm
* Jerry Eliah http://www.anencephalie-info.org/e/JerryEliah.htm
* Jesse Alexander http://www.anencephalie-info.org/e/jesse.htm
* Jessica Marie http://www.angelfire.com/mb/jessicasjourney
* Jessica Jade http://www.geocities.com/poglet12000/index.html

* John Raphael  http://johnraphaelpaniagua.memory-of.com/

* Jonathan http://www.anencephalie-info.org/e/jonathan.htm 

* Joseph Jerome  http://www.anencephalie-info.org/e/joey.htm 
* Joyann http://www.anencephalie-info.org/e/joyann.htm
* Julie  http://www.anencephalie-info.org/e/julie.htm 

* Katie Marie http://old.mbconf.ca/mb/mbh3508/bartel.htm
* Keegan Alexander http://www.babiesonline.com/babies/k/keeganalexander/
* Kyle Benjamin  http://www.anencephalie-info.org/e/kyle.htm 

* Lana Raine http://www.lanaraine.tk
* Logan Quinn http://www.geocities.com/valleyhillnicole/LoganQSTORY.html
* Loren http://www.anencephalie-info.org/e/loren.htm
* Lucas http://www.anencephalie-info.org/e/lucas.htm
* Luke Daniel http://www.anencephalie-info.org/e/lukedaniel.htm
* Malachi Samuel http://malachisamuel.bravehost.com
* Mary Elisabeth http://www.anencephaly.net/mary.html
* Mary Magdalene  http://www.alexandrashouse.com/resource/mary_magdalene.pdf 

* Maryann http://www.anencephalie-info.org/e/maryann.htm
* Matthew http://angelfire.com/ms/inmemoryofmatthew
* McCoy  http://www.anencephalie-info.org/e/mccoy.htm 

* Michael Andrew http://www.anencephalie-info.org/e/michaelandrew.htm
* Michael David http://www.anencephalie-info.org/e/michaeldavid.htm 

* Michaela Hope http://www.angelfire.com/mn/michaelashope
* Nathan http://www.angelfire.com/mb/jessicasjourney/nathan.html
* Pedro José http://www.anencephalie-info.org/e/pedro.htm
* Robert William  http://www.anencephalie-info.org/e/robert.htm 

* Rosie http://www.geocities.com/stillgrieve/rosiestory.html
* Rose Dale http://www.anencephalie-info.org/e/rosedale.htm
* Sarah http://www.anencephalie-info.org/e/sarah.htm 

* Stephen http://www.benotafraid.net/story.asp?id=61
* Tabitha http://groups.msn.com/camikevin/journal.msnw
* Talitha Hope http://talithahope.homestead.com/birthstory~main.html
* Timothy Paul  http://www.geocities.com/johnson.2592   http://www.anencephalie-info.org/e/timothy.htm 

* Tyler http://www.anencephalie-info.org/e/Tyler.htm
* Victoria Christine http://www.erichad.com/wwl/wwlvcm.htm
* Weston  http://www.alexandrashouse.com/resource/sarah_weston_story.pdf 

* William Jasper http://www.geocities.com/williamscottcraft

* Zakary Evan http://www.anencephalie-info.org/e/zakary.htm 

Twins:

* Anna and Tess http://www.anencephalie-info.org/e/anna.htm

* Anna and Logan  http://www.anencephalie-info.org/e/annalogan.htm 
* Cody Todd and Amy Lynn http://www.pregnancy.org/article.php?sid=81
* David and Jonathan http://www.anencephalie-info.org/e/david.htm 
* Faith and Sarah http://www.anencephalie-info.org/e/faith.htm
* Jordan and Jonathan http://www.pain-heartache-hope.com/stories/julie.htm
* Lee and Leah http://www.latimes.com/news/printedition/la-na-hospice28jan28,1,12943.story?ctrack=1&cset=true
* Matthew and Emily http://www.anencephalie-info.org/e/Matthew.htm
* Matthew and Emily http://www.mattymyangel.com

* Sunshine and Katelyn http://www.geocities.com/sunshinejoy625/index.html

 

 

Online support groups / helpful websites:


* Anencephaly Support http://groups.yahoo.com/group/Anencephaly_Support A pro-life group of friends offering support and encouragement to those whose baby has been newly diagnosed with anencephaly; who are currently carrying an anencephalic baby to term &; who have carried a baby with anencephaly as long as they could; who experienced a subsequent pregnancy-after-loss; those looking for information about carrying their baby to term; and those who have aborted/induced their anencephalic baby and regret having made that choice.

* Anencephaly Blessings From Above http://groups.yahoo.com/group/AnencephalyBlessingsFromAbove/ 

A PRO-LIFE, full-term anencephaly support forum. We provide information, support, and safe haven to families of babies with anencephaly who are currently carrying, who have carried to term, or who have carried as long as they physically could.

* Mourning Mommies http://groups.msn.com/mourningmommies/
This group is for anencephalic angels and their mommies. We talk about our experiences, and provide support and information for those that are in need. If you’ve lost a baby to Anencephaly, this is the perfect place. Whether you’ve induced or carried your baby, we all need help in coming to terms with grief. Mourning Mommies supports all choices made upon diagnosis of Anencephaly (we discourage members who join to debate or incite discussions about the wrong or right choice).
The Morning Mommies have also a website: http://www.geocities.com/mourningmommies

* Anencephaly Support ~ Australian Parents http://au.groups.yahoo.com/group/as_ap/ 

Support and friendship for Australian parents of children with Anencephaly, also offering support to family and friends touched by the loss of a child to Anencephaly.


* Anencephaly Support For Grandparents http://groups.yahoo.com/group/AnencephalySupportForGrandparents/
This group is for grandparents who have lost a grandchild to anencephaly at any stage

* The Anencephaly Net http://www.anencephaly.net

* Be Not Afraid http://www.benotafraid.net
Benotafraid.net is an online outreach to parents who have received a poor or difficult prenatal diagnosis. The family stories, articles, and links within this site are presented as a resource for those who may have been asked to choose between terminating a pregancy or continuing on despite the diagnosis. The benotafraid.net families faced the same decision and chose not to terminate. By sharing our experiences, we hope to offer encouragement to those who may be afraid to continue on.


* Tiny Purpose http://www.tinypurpose.com/perinatal.htm  
If your unborn baby has an illness that has no cure, you may be overcome with questions and decisions you are not prepared to make. Tiny Purpose Perinatal Program addresses your needs as expectant parents, as well as preparing for the needs of your baby. The combined services of your physician and Tiny Purpose work alongside you to provide a bridge of support during your pregnancy and beyond.


* Carrying to Termhttp://www.geocities.com/tabris02/index.html
This pages are intended as a practical guide for women carrying to term knowing their baby has a life-threatening birth defect. While many tips come from the personal experience of Jane (Emily Rose's mummy), this site actively solicits tips from other mothers and fathers who have "been there" and want to help others avoid the pitfalls and make the most of their brief time with their babies.

* Waiting with Love http://www.erichad.com/wwl/index.htm
For parents who choose to continue a pregnancy knowing their unborn baby will die before or shortly after birth and for families who learn their newborn will die.

* Prenatal Diagnosishttp://www.angelfire.com/ca/numberslady/
This webpage was set up to provide positive, life-affirming alternatives to the option (abortion) which the medical community offers to women facing a negative prenatal diagnosis. We are women who have also been given a negative prenatal diagnosis, but who have carried our babies to term, sometimes with surprising results!

 

* Prenatal Partners For Life http://www.prenatalpartnersforlife.org

* Perinatal Hospice http://www.perinatalhospice.org/
As prenatal testing becomes increasingly routine, more parents are learning devastating news before their babies are born. In too many places, the ability to diagnose has raced ahead of the ability to care for these families and their babies. But in a beautiful and practical response, a few hospitals and hospices around the country are starting perinatal hospice or perinatal palliative care programs for families who wish to continue their pregnancies with babies who likely will die before, during, or after birth.

* Down The Road Of Bittersweet http://www.k4communications.com/karl/bittersweet.html  

A song about carrying to term

 

* A Place to Turn When a Newborn Is Fated to Die  http://www.nytimes.com/2007/03/13/health/13hospice.html?ex=1331524800&en=fd41f4adcc4c0079&ei=5124&partner=permalink&exprod=permalink 
Families whose babies suffer from fatal conditions are turning to specialized hospice programs for help. New York Times article

 

 

Resources to help preparing your baby's birth:



* Rights of Parents when a Baby Dies http://www.shareatlanta.org/rights.htm

* Birthplan sample  http://www.alexandrashouse.com/resource//birth_plan.pdf 
* Alex's birthplan http://www.erichad.com/wwl/bpacc.htm
* Benedict's birthplan http://www.geocities.com/teesieau/memorials.html
* Brandon's birthplan http://www.geocities.com/tabris02/bp-brandon.html
* Brianna's birthplan http://www.geocities.com/tabris02/bp-brianna.html
* Elija and Jonathan's birthplan http://www.geocities.com/tabris02/bp-elijah.html
* Emily's birthplan http://www.geocities.com/tabris02/bp-emily.html
* Gabriel Aaron's birthplan http://www.geocities.com/anencephalygabriel%40sbcglobal.net/BirthPlan.html
* Gracie Lynn's birthplan  http://www.anencephalie-info.org/e/birthplangracie.htm 

* Jack's birthplan http://www.geocities.com/tabris02/bp-jack.html
* Jenna Grace's birthplan http://www.anencephalie-info.org/e/birthplanjenna.htm
* Michaela's birthplan http://www.angelfire.com/mn/michaelashope/page7.html
* Stephenie's birthplan http://www.geocities.com/tabris02/bp-stephenie.html
* Victoria's birthplan http://www.erichad.com/wwl/bpvcm.htm
* Zachary's birthplan http://www.geocities.com/tabris02/bp-zachary.html


Ethical issues:



* Is My Child an Angel Now? by Billy Graham http://www.geocities.com/jennbillncass/biblicalanswers.html

* Who wants a defective baby? http://www.benotafraid.net/article.asp?id=5

* A special comfort http://www.benotafraid.net/article.asp?id=9
Kansas city woman reaches out to families whose children are dying

* What to say?http://www.benotafraid.net/article.asp?id=8


Medical information about anencephaly:



* e-medecine Anencephaly article http://www.emedicine.com/neuro/topic639.htm


* e-medecine Neural Tube Defects article http://www.emedicine.com/neuro/topic244.htm


* NINDS Anencephaly Information Page http://ninds.nih.gov/health_and_medical/disorders/anencephaly_doc.htm


* Exencephaly - Anencephaly http://www.obgyn.net/us/cotm/0006/Exencephaly-Anencephaly.htm


* Anencephaly Awareness http://www.angelfire.com/mb/jessicasjourney/info.html


* The Fetus http://thefetus.net


* Neural Tube Defects http://www.chg.duke.edu/diseases/ntd.html


* Spontaneous pregnancy outcome after prenatal diagnosis of anencephaly, article by Jaquier M, Klein A, Boltshauser E., published in the magazine BJOG 2006; 113:951-953

 

* The Duke Center for Human Genetics is currently conducting a genetic study called "The Hereditary Basis of Neural Tube Defects" to determine the causes of anencephaly and other NTDs. By studying families with anencephaly and other NTDs, they hope to identify the genes that contribute to the development of the neural tube. They hope this research will eventually lead to more accurate genetic counseling and risk assessment, improved treatments, better prevention methods, and possibly, a cure. 

More information and how to participate: http://www.chg.duke.edu/diseases/anencephaly.html 

 

* PanoramaScan  http://www.panoramascan.com/ 

PanoramaScan.com has been providing fetomaternists, sonologists, obstetricians, gynecologists, sonographers and radiologists with a state-of-the-art online ultrasound education. Through our huge library of ultrasound images, videos, documents and presentations they deliver high quality medical education plus providing a discussion link for all featured ultrasound subjects



Information about cephalic disorders:


* Cephalic Disorders http://www.neurologychannel.com/cephalicdisorders/


Encephalocele

* Haley Faith http://www.alexandrashouse.com/resource/haley_faith.pdf 


Holoproscencephaly (HPE)
* Isabella's story http://www.geocities.com/toddnlizcraft/
* Donna Joy http://www.benotafraid.net/story.asp?id=56

Hydranencephaly:
* Rays of Sunshine, Hydranencephaly Information http://www.hydranencephaly.com/
* Kayda's story http://www.sidneyfaith.ws/sidney/kayda.htm

Microcephaly:
* Benjamin's story   http://www.metrocast.net/~reorton/


Prevention of anencephaly:


* Spina bifida and anencephaly before and after folic acid mandate in the USA, 1995-1996 and 1999-2000
http://www.cdc.gov/mmwr/preview/mmwrhtml/mm5317a3.htm


* Irish researchers identify important clue to genetic sis for neural tube defects http://www.zongoo.com/article7086.html


* The primary prevention of birth defects: Multivitamins or folic acid? http://medsci.net/v1/i1/czeizel.pdf


* PONTI Study (Prevention Of Neural Tube defects by Inositol) www.pontistudy.ich.ucl.ac.uk

If you have had a pregnancy affected by a neural tube defect and planning another pregnancy, you might want to know about an important research project that aims to prevent neural tube defects with a vitamin treatment. UK only.

 


Babies with anencephaly as organ donors ?



* Anencephalic fetuses as organ donors http://www.thefetus.net
Two very good articles about the debate of using anencephalics as organ donors. Click on 'Articles', then 'Central Nervous System and Spine', 'Anencephaly', 'Anencephalic fetuses as organ donors' (links to TheFetus.net must go to their main page).


Loss in multiples:



* Center for Loss in Multiple Birth (CLIMB), Inc. http://www.climb-support.org
By and for parents who have experienced the death of one or more children during a twin, triplet or higher multiple pregnancy. Quarterly newsletters, parent contact list, bibliography of information, ...

* POM parents of multiples forever http://www.erichad.com/pom/index.htm

* Multiplicity http://www.synspectrum.com/multiplicity.html


Support for grandparents:



* Grandparent's Grief Support and E-mail Exchange http://www.shareatlanta.org/grandparents.htm


* Anencephaly Support For Family and Friends http://health.groups.yahoo.com/group/AnencephalySupportforFamilyandFriends/ 

A support group for family & friends of loved ones who have lost or are carrying a child with anencephaly. Their loved one has a difficult decision to make, to end the pregnancy early or to carry to term. Family and friends can only 'be there' as that decision is made. This group is here for those family and friends, a safe haven to ask any questions about fears and beliefs that they have. We are not here to judge anyone on the decision that their loved ones have made. We are here to listen, support and help family and friends through a difficult time.


* Anencephaly Support For Grandparents http://groups.yahoo.com/group/AnencephalySupportForGrandparents/
This group is for grandparents who have lost a grandchild to anencephaly at any stage

* AGAST Alliance of Granparents, a Support in Tragedy http://www.agast.org

* The story of Gabriel Aaron, written by his Grandpa http://www.geocities.com/anencephalygabriel%40sbcglobal.net/papameehan.html


Advice for caregivers:


* Information, material and links for professionals and caregivers http://www.shareatlanta.org/profhelp.htm


Support after the loss of a baby:


* National SHARE Office  http://www.nationalshareoffice.com 

 

* SHARE Atlanta  http://www.shareatlanta.org
For parents who have experienced pregnancy or newborn loss

* Hannah's Prayer http://www.hannah.org
Hannah's Prayer desires to provide Christian based support and encouragement to couples around the world who are struggling with the pain of "fertility challenges" including infertility, pregnancy loss or early infant death. Hanna's Prayer Ministries is a California based, non-profit organization. All staff members are unpaid volunteers who are proclaiming Christians (from a range of denominational backgrounds) and have personal experience with the heartache of fertility challenges.

* Mending broken hearts http://www.mendingbrokenhearts.org/index.htm
Mending Broken Hearts is a site maintained by individuals who honor your child's importance and realise the special needs of families after experiencing a miscarriage, ectopic pregnancy, stillbirth, or newborn death. Many bereaved parents are surprised and unprepared for the intensity of emotions they are now experiencing. They provide a place to visit when you feel alone in your grief or when it seems others are weary of giving the type of support you need.

* MISS Mothers In Simpathy and Support http://www.misschildren.org
The trinity of their mission begins with immediate and ongoing psychosocial support to the grieving child, parents, and grandparents after the ultimate tragedy- a child family members death. The family unit is at grave risk for long term adverse effects when not properly supported through this horror. The second aspect of their organisation is to educate, empower, and support the medical professional affected by this type of tragedy. They offer retreats, conferences, and professional training accredited for ceu/cme. Finally, the MISS Foundation supports medical research.

* A Place To Remember http://www.aplacetoremember.com
Uplifting support materials and resources for those who have been touched by a crisis in pregnancy or the death of a baby.


* Shining Light Fund http://www.shininglightfund.org/mission.htm

The mission of The Shining Light Fund is to provide compassionate support to families who have suffered the loss of a child through miscarriage, stillbirth or infant death. We do this by offering birthstone mother's bracelets, free of charge, as tangible remembrances of life. We also provide links to bereavement resources here on the website.

* Now I lay me down to sleep Discussion Forum http://www.nowisleep.com

* The Bruderhof Grief Companion http://www.griefcompanion.org

* Remembered Forever http://www.remembered-forever.org

Remembered forever is a place for those of us who have lost loved ones to cherish and celebrate their lives. Here, you can share memories, photos, videos and more, creating an everlasting tribute to those who have passed away, and access it from anywhere in the world.

 

* Pregnancy and Infant Loss Remembrance Day  http://www.october15th.com/ 

 

* A small Victory  http://asmallvictory.org 

A Small Victory is a 501(c)(3) non-profit organization offering support to newly bereaved parents by providing ‘Loss Kits’ which will gently guide them in creating memories to last a lifetime.



Pregnancy and parenting after loss:


* ABFA Subsequent Pregnancies  http://health.groups.yahoo.com/group/abfasubsequentpregnancies/ 
This group is a branch of "Anencephaly Blessings From Above", dedicated specifically to supporting members through pregnancies after the loss of a baby to anencephaly. It is a safe place to post about your fears and joys during a subsequent pregnancy, some of which might be unhelpful to women still carrying their anencephalic baby.



About pictures and keepsakes:


* NOW I LAY ME DOWN TO SLEEP http://www.nowilaymedowntosleep.org 

gently provides a helping hand and a healing heart to parents experiencing an early infant loss. NILMDTS offers a vital service to our community. For families overcome by grief and pain, the idea of photographing their baby may not immediately occur to them. Offering gentle and beautiful photography and videography services in a compassionate and sensitive manner is the heart of this organization. The soft, gentle heirloom photographs of these beautiful babies are an important part of the healing process. They allow families to honor and cherish their babies, and share the spirits of their lives.

 

* Simply Yours Creations http://www.simply-yours-creations.com/store/WsDefault.asp?Cat=Birth/BereavementAnnouncements 

provide sensitive & beautiful photo card birth and bereavement announcements for your precious child(ren).

 

* Baby Photo Retouching Service http://www.babyphotoretouch.com
Unfortunately, some of us don't get the happy ending we expect after many long weeks of pregnancy. You have a loss, a loss that no pregnant couple even wants to think about. When it happens to you, there is shock and indescribable sorrow. When it is all over, if you are lucky (and your hospital nursing staff has been properly trained) you will at least have some photos of your precious child; photos you will cherish forever. It has been my experience that often these cherished photos are all too graphic, showing a damaged baby, not the beautiful child you remember giving birth to. Using digital technology and your negatives or prints, I can correct some or most of the damaged image, giving you baby photos that you will want to display and share with family and friends.

* Photo Restauration Service http://www.babyangelpics.com/photorestauration.php 


* Scrapbooking http://www.rememberingyourbaby.com
An unofficial guide to scrapbooking for bereaved parents

 

* Just A Cloud Away http://www.justacloudaway.com/ 
Suggestions and remembrance kits to create lasting keepsakes of your baby

others:

 

* European Pro-Life Doctors EPLD  http://www.epld.org/html/welcome.html 

European Medical Movement for the Right of Life 

 


NB: The content of the linked websites do not necessarily reflect the opinions of Anencephaly Information and inclusion on this page does not constitute a recommendation or endorsement by Anencephaly Information.

 

By clicking these links, you are leaving the anencephalie-info.org website. Anencephaly Info is not responsible for the content or views of these sites.


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