* More resources for parents who carry their baby to term despite a poor prenatal diagnosis

* Anencephaly Information in Indonesian!

Support groups / carrying to term websites:

* 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
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
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.

* 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.

* The Anencephaly Net

* Anencephaly.co.uk
Website of a family of a baby with anencephaly in the UK. "Our aim is to provide a place for people in the UK to talk to other families within the UK who have had experiences with anencephaly."

* Be Not Afraid
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
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 Term
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
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 Diagnosis
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
Support information & encouragement for carrying to term with an adverse prenatal diagnosis and support for raising your child with special needs after birth.

* String of Pearls Offering Hope for the Journey
String of Pearls was created to provide a nurturing and safe place for families as they navigate the path following a fatal prenatal diagnosis that will result in the death of their baby prior to, or shortly after birth. The path between grief and hope is a difficult place to walk; our desire is to provide guidance, compassion and practical suggestions as plans to honor the life of pre-born babies are crafted. Each life has a story worthy of telling and we are here for support as stories are lovingly written.

* Down The Road Of Bittersweet
A song about carrying to term

* 99 Balloons
A beautiful and very inspiring short movie about Eliot, who had trisomy 18

* My Child, My Gift
A Positive Response to Serious Prenatal Diagnosis
A well-researched yet easily understandable, positive guide when you need to make sense out of what seems to be senseless.

* Why carry a dying child?
A mother's perspective, written by Teresa Streckfuss, Benedict Oliver and Charlotte Mary's mother

* Welcome to Holland
An essay, written in 1987 by Emily Perl Kingsley, about having a child with Down Syndrome, though it is applicable to many other birth defects

* Carolina Perinatal Support Network
Carolina Perinatal Support Network was established to provide a bridge of support for families experiencing an adverse prenatal diagnosis that will likely result in a preborn or newborn death. Through practical guidance, education, and compassionate support, we seek to relieve the emotional suffering while preserving the dignity and integrity of the family as they make meaningful plans to honor the life of their baby, regardless of the length of their baby’s life.

* Carry to term with a negative prenatal diagnosis

Birth plans:

* Rights of Parents when a Baby Dies
* Birthplan sample
* Birthplan sample from Carolina Perinatal Support Network
* Birthplan sample for Comfort Care scroll down to get to the plan
* Alex's birthplan
* Benedict's birthplan
* Brandon's birthplan
* Brianna's birthplan
* Carleigh's birthplan
* Elija and Jonathan's birthplan
* Emily's birthplan
* Gabriel Aaron's birthplan
* Jack's birthplan
* Michaela's birthplan
* Stephenie's birthplan
* Victoria's birthplan
* Zachary's birthplan

Ethical issues:

* Is My Child an Angel Now? by Billy Graham

* Who wants a defective baby?

Medical information about anencephaly:

* Publications about anencephaly

* e-medecine Anencephaly article

* e-medecine Neural Tube Defects article

* NINDS Anencephaly Information Page

* Exencephaly - Anencephaly

* The Fetus

* Neural Tube Defects

* Spontaneous pregnancy outcome after prenatal diagnosis of anencephaly
Article by Jaquier M, Klein A, Boltshauser E., published in the magazine BJOG, An International Journal of Obstetrics and Gynaecology 2006; 113:951-953

* The Hereditary Basis of Neural Tube Defects
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.

* PanoramaScan
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

* Brazilian Anencepalic Baby Shatters Pro-Abortion Myths
interesting article about a baby that lived for 1 1/2 years.

Information about cephalic disorders:

* Cephalic Disorders

Encephalocele
* Adiana Grace
* Haley Faith
* Faith Aminah
* Joshua blog about his story
* Joshua slideshow

Holoprosencephaly (HPE)
* Holoprosencephaly.net
* Isabella
* Donna Joy
* Pearl
* Riley

Hydranencephaly:
* Rays of Sunshine, Hydranencephaly Information

Microcephaly:
* Benjamin's story

Information about neural tube defects:

Spina bifida * Internation Federation for Spina bifida and Hydrocephalus

Prevention of anencephaly:

* Spina bifida and anencephaly before and after folic acid mandate in the USA

* Irish researchers identify important clue to genetic sis for neural tube defects

* The primary prevention of birth defects: Multivitamins or folic acid?

* PONTI Study (Prevention Of Neural Tube defects by Inositol)
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

* Anencephalics as organ donors

Loss in multiples:

* Center for Loss in Multiple Birth (CLIMB), Inc.
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

Support for grandparents, family and friends:

* Grandparent's Grief Support and E-mail Exchange

* Anencephaly Support For Family and Friends
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
This group is for grandparents who have lost a grandchild to anencephaly at any stage

* AGAST Alliance of Granparents, a Support in Tragedy

* The story of Gabriel Aaron, written by his Grandpa

* What to say?

Advice for caregivers:

* Information, material and links for professionals and caregivers

Support after the loss of a baby:

* National SHARE Office

* SHARE Atlanta
For parents who have experienced pregnancy or newborn loss

* MISS Mothers In Simpathy and Support
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.

* Shining Light Fund
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.

* Pregnancy and Infant Loss Remembrance Day

* A small Victory
A Small Victory is a 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
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
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.

* Now I lay me down to sleep Discussion Forum

* The American child photographers Charity Guild
A non-profit, volonteer based organization of child photographers from all over the country who have come together to form a guild dedicated to children in need and their families.

* Simply Yours Creations
Provide sensitive & beautiful photo card birth and bereavement announcements for your precious child(ren).

* Scrapbooking for bereaved parents

* Just A Cloud Away
Suggestions and remembrance kits to create lasting keepsakes of your baby

* Preemie patterns

Perinatal Hospice:

* Perinatal Hospice
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.

* A Place to Turn When a Newborn Is Fated to Die
Families whose babies suffer from fatal conditions are turning to specialized hospice programs for help. New York Times article

* A special comfort
Kansas city woman reaches out to families whose children are dying

Grief

* Calvin and Hobbes
Bill Watterson wrote one of the most deep and touching stories about grief when Calvin and Hobbes find a hurt raccoon.

Newspaper articles:

* Honoring Gabriel

* The Risk Of Love

* Expectant parents' joy turns to sorrow
They await birth of daughter, who has terminal condition

* Couple's unborn child has terminal condition

others:

* European Pro-Life Doctors EPLD
European Medical Movement for the Right of Life

* Health Directory

* Ask An OB.com
A website with medical information all around pregnancy written by an OB/GYN.

* Mercy Ships
Please visit the website of this amazing global charity that has operated hospital ships in developing nations since 1978. Mercy Ships brings hope and healing to the forgotten poor by mobilizing people and resources worldwide, and serving all people without regard for race, gender, or religion. Their Crew of both professional medical and non-medical volunteers have chosen a very powerful way to share their blessings.

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.

Last update: March 2, 2010

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