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 Awareness - Everything you ever wanted to know about Anencephaly, but couldn't find!
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.
Infants Remembered In Silence, Inc. - IRIS is a 501(c) 3 non-profit organization that is dedicated to offering support, education and resources to parents, families, friends and professionals on the death of a child in early pregnancy (miscarriage, ectopic pregnancy, molar pregnancy, etc) or from stillbirth, premature birth, neo-natal death, birth defects, sudden infant death syndrome (SIDS), illness, accidents, and all other types of infant and early childhood death. IRIS is funded 100% by donations and memorials.
Anencephaly Information - Anencephaly is a congenital malformation 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 often confronted with a choice between life and death. A choice 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 our anencephalic babies. I hope that it will be of help to you and impart courage.
Waiting with Love - 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.
BeNotAfraid.net - an online outreach to parents who have received a poor or difficult prenatal diagnosis. The family stories, articles, and links within BeNotAfraid.net are presented as a resource for those who may have been asked to choose between terminating a pregnancy or continuing on despite the diagnosis. The BeNotAfraid.net families faced the same decision and chose not to terminate. By sharing their experiences, they hope to offer encouragement to those who may be afraid to continue on.
Carrying To Term With a Negative Prenatal Diagnosis - a support site for parents who choose to carry their baby to term with an adverse prenatal diagnosis.
Anencephaly Support ~ Australian Parents - 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.
Search DMOZ - Search the open directory project for information on anencephaly.
Duke Anencephaly study - The Duke Center for Human Genetics conducts genetic studies 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.
Moral Principles Concerning Infants With Anencephaly - Committee on Doctrine National Conference of Catholic Bishops (U.S.).
Infants with Anencephaly as Organ Sources: Ethical Considerations - American Academy Of Pediatrics, Committee on Bioethics.
Transplantation of organs from newborns with anencephaly - Bioethics Committee, Canadian Paediatric Society (CPS).
Babies for Life Foundation
offers an easy way for mothers to donate their baby's umbilical cord blood for
people in need of a stem cell transplant. Babies for Life Foundation is a
private non-profit organization developed with the idea of coordinating the
efforts of women who wish to donate their baby's cord blood that would
otherwise be thrown away as medical waste. In partnership with an AABB
(American Association of Blood Banks) accredited facility, they are able to
work together to increase public awareness and build the availability of stem
cell units. These donations will be listed on International Registries to be
accessed by Transplant centers anywhere in the world. In turn, most of the
proceeds raised by Babies for Life Foundation are given back to local
Selected Pro-Life Sites
Prenatal Partners for Life is a group of concerned parents (most of whom have or had a special needs child), medical professionals, legal professionals and clergy whose aim is to support, inform and encourage expectant or new parents. They offer support by connecting parents facing an adverse diagnosis with other parents who have had the same diagnosis. They have many resources such as adoption agencies with clients waiting to adopt and love a special needs child should a parent feel they could not care for them.
Here is an article about the birth of an anencephalic child and the issues surrounding the birth from the perspective of the doctor. The article is called Brenden Has Arrived.
The Ultimate Pro-Life Resource List - The most comprehensive listing of right to life resources on the Internet.
Priests for Life - An officially approved association of Catholic Clergy who give special emphasis to the pro-life teachings of the Church. They offer ongoing assistance to the clergy in addressing the topics of abortion and euthanasia, and training and resources to the entire pro-life movement.
Option Line - and their network of participating pregnancy centers offers peer counseling and accurate information about all pregnancy options; however, these centers do not offer or refer for abortion services or the morning-after pill.
The Compassionate Friends - The mission of The Compassionate Friends is to assist families toward the positive resolution of grief following the death of a child of any age and to provide information to help others be supportive. The Compassionate Friends is a national nonprofit, self-help support organization that offers friendship and understanding to bereaved parents, grandparents and siblings. There is no religious affiliation and there are no membership dues or fees.
SHARE Pregnancy and Infant Loss Support, Inc. - a not-for-profit nondenominational organization providing support to those whose lives are touched by the tragic death of a baby through early pregnancy loss, stillbirth or newborn death.
Mourning Mommies - A place for mommies who have lost babies to anencephaly. This club was founded to remember the Anencephalic angels, and talk about about those experiences. If you have lost a baby to anencephaly, whether induced or carried to term, then this forum is a good place to share. The forum is not for debating the merits of decisions already made, but rather for support and information.
Learn Psychology have created a resource, Navigating Grief: A Guidebook for Grief Awareness & Understanding. Highlights of this guide include:
Rare Disease Support eGroup for People affected by Anencephaly - This is an International Rare Disease Support Network (www.raredisorders.com) eGroup open to anyone affected by anencephaly. It has been established for family members, friends, educators and medical professionals interested in sharing information and/or support for parents of affected children.
The Bruderhof Grief Companion - a resource for the grieving and bereaved. The site features writings from a variety of classic and contemporary writers that grieving people have found helpful and comforting. This includes five full length books which can be freely downloaded.
Alexandra's House - a Charitable Perinatal Hospice and Infant Refuge, founded and located in Kansas City, Missouri, serving families across the United States of America. Their mission is to give hope, comfort, and meaning to suffering families and their very special babies. These are babies that are expected to die at or shortly after birth, but their parents make the heroic decision to carry their babies to term, in spite of its desperate outcome.
Remembered Forever allows grieving users to build personalized memorials, dedicated to their loved ones. The site was created after a sudden loss in the family, and Ian McIntosh and his whole family found it an excellent way of not only easing the grief process, but celebrating the life of a family member. Memorialization is important to families, and via the Remembered Forever site, it is unique in that it allows all members of the family to place their thoughts, memories, and condolences in one place.
Mary Elizabeth Karg - I always knew that my baby needed me to protect her and to be her voice from the time that she was conceived. I am so very thankful that I was able to hold her and see her beautiful face. Mary's story is also translated into Spanish, German, and French.
Kimberly Ann Flint - The true story of a little girl that the doctors said would not have any quality of life.
Paige Frances Gerwin - Paige Frances was such a beautiful baby! She was such a joy and such a blessing! She did so well during her time here! We are so proud and honored to be her mother and father!.
Faith Aminah Shabazz - Faith was diagnosed with anencephaly while still in the womb. Her mother, Margo, chose to carry her to term. Faith was born in March of 2001, and lived until October, 2003. She brought joy into the lives of all those who knew her.
My Daughter, My Angel - Annalise Maria Therese Mansfield - A story about the journey from Annalise's diagnosis till her eventual death. Sue hopes her story will be of encouragement to other mothers carrying their babies to term with anencephaly or any fatal defect.
The Life of River Creedance - a claymation that depicted the events that Joy and Derek were going through, from the eyes of River inside of Joy's womb. This 5 month project, that began when Joy was 4 months pregnant, was extremely therapeutic for Derek as he went through this time of joy/grief.
Loren - A site dedicated in memory of Loren Joseph Henninger - Born Still but Still Born. Ray and Ann Marie called him Loren in honor of his Dad (it is Ray's middle name), and Joseph after Jesus' earthly father.
Anouk - Anencephaly is a congenital malformation 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 I have made the choice to share the story of the brief, but wonderful life of our anencephalic daughter, Anouk. I hope that it will be of help to you and impart courage.
Michaela's Hope - A site dedicated in memory of Michaela Hope Bucher, and all babies with anencephaly.
For Hope... - This is the story of Brett and Tamara's beloved daughter, Hope Christine.
Tribute in Honor of Benedict Oliver Streckfuss - Benedict Oliver had anencephaly. He touched so many people's lives, and through his story, he will touch yours, too.
Christopher Ryan - Christopher Ryan was born in November of 1992 and he lived 24 hours after a caesarean section. He weighed 6 lbs and 15 oz and was 19 1/2 inches long. He was so adorable and lovable like a little teddy bear. He had inherited his big brothers good looks.
My Angel Ariel - This website is a memorial to Ariel Elisabeth Sainte Claire, who lived for just four hours, having been born with anencephaly. Ariel became an angel on October 1st, 1972. (from Web Archive)
Emily Rose's Story - When Jane became pregnant with her second child, she prayed that everything would go differently. She should have been more specific about what she asked for, because the first time she left the hospital with a living child.
An Angel Named John Raphael - Have you ever met an angel before? Well let me introduce myself. My name is John Raphael Paniagua. You see, my story begins May 2002 when my parents conceived me.
My son Logan - who lived a little over 33 hours after being born with the fatal birth defect anencephaly.
Anencephaly Net was created by
Steve and Patricia Karg in
loving memory of their daughter, Mary Elizabeth.
Anencephaly.Net is hosted at github.com.