Links about anencephaly
- Stories about babies with anencephaly
- Online support groups / carrying to term websites
- Resources to help preparing your baby's birth
- Ethical issues
- Medical information about anencephaly
- Information about cephalic disorders
- Information about neural tube defects
- Prevention of anencephaly
- Babies with anencephaly as organ donors?
- Loss in multiples
- Support for grandparents, family and friends
- Advice for caregivers
- Support after the loss of a baby
- Pregnancy and parenting after loss
- About pictures and keepsakes
- Perinatal hospice
- others
Stories about babies with anencephaly:
* The Life of River Creedance, a claymation / movie
* Video of Gabriel James
* Alexa
* Anastasia
* Annalise
* Ariel Elisabeth
* Austin
* Ava Grace
* Benedict Oliver
* Boston Michael
* Brandon Bobola
* Caleb
* Ceilidh Marie
* Charlotte Mary
* Christiana
* Christianna
* Colby
* Cyril
* Daniel Ray
* Emily Rose
* Faith Lynn
* Gabriel
* Gabriel Aaron
* Gracie Jo
* Jasmine Faith
* Jenna
* Jessica Marie
* Jessica Jade
* John Raphael
* Katie Marie
* Keegan Alexander
* Logan Quinn
* Malachi Samuel
* Mary Elisabeth
* Mary Magdalene
* Matthew
* Michaela Hope
* Nathan
* Rosie
* Stephen
* Tabitha
* Talitha Hope
* Timothy Paul
* Victoria Christine
* Weston
* William Jasper
Twins:
* Cody Todd and Amy Lynn
* Lee and Leah
* Matthew and Emily
* Sunshine and Katelyn
Online 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
* 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.
* 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
Resources to help preparing your baby's birth:
* Rights of Parents when a Baby Dies
* Birthplan sample
* Alex's birthplan
* Benedict's birthplan
* Brandon's birthplan
* Brianna'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:
* 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
Information about cephalic disorders:
* Cephalic Disorders
Encephalocele
* Haley Faith
* Faith Aminah
Holoprosencephaly (HPE)
* Holoprosencephaly.net
* Isabella
* Donna Joy
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
* 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
others:
* European Pro-Life Doctors EPLD
European Medical Movement for the Right of Life
* Health Directory
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: 4 April 2008
