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Links about anencephaly

- Stories about babies with anencephaly

- Texts and stories written by fathers

- Blogs

- Videos and slideshows of babies with anencephaly

- Support groups / help for affected families

- Parenting plans (birthplans)

- 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 siblings

- 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

- Grief

- others


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


* Anencephaly Information in Indonesian!


Stories about babies with anencephaly:

* Ahbra Diana
* Alfonso
* Anastasia
* Andrew
* Ava Grace
* Benedict Oliver
* Boston Michael
* Caleb Michael
* Ceilidh Marie
* Charlotte Mary
* Colby
* Cyril
* David alive for 53 days
* Dylan Jonathan
* Emery
* Emily Rose
* Emma and Connor
* Faith Lynn
* Gabriel
* Gabriel James
* Gracie Jo
* Ivan
* Jenna
* Jessica Marie
* Jessie
* John Paul
* Josephine Blevins
* Laila Grayce
* Mary Elisabeth
* Mary Magdalene
* Mary Therese
* Matthew
* Michaela Hope
* Nathan
* Rose Jacqueline
* Shana Rae
* Skylar
* Talia Finn
* Timothy Paul
* Weston


* Carys Rainn and Paxton
* Christopher and Kailee
* Laurencia and Valencia monoamniotic-monochorionic twins
* Lilly Kate and Cowen
* Lillyann and Kate
* Jessica and Michael
* Jonathan and Jordan
* Riley and her sister
* Scarlett and Vivienne monoamniotic-monochorionic twins
* Tessie and Noah
* Trey and Kendall

Texts and stories written by fathers of a baby with anencephaly

* Ajani
* Jesse
* Rose
* Zion Grace
* Don't waste your child's life written by Chase's father Jon
* Cameron's blog about his daughter Caroline Grace
* Craig's blog about his daughter Anastasha Kalil
* Rob's blog about his daughter Charity Angelia
* From the heart of a daddy by Jason Young, father to Adelle
* Baby Jack's story by Jack's father Brad
* Glorifying God in Life and Death by Joses' father Seth
* A letter from Dad" A young couple in Australia discover that their unborn child is severely disabled and will most likely not survive. The couple choose not to terminate the pregnancy. Here's the letter this real-life father wrote to his son.


* Abigail Leigh
* Adelle
* Aiden Edward
* Aliyah Joy
* Amelia Lynn
* Amelia Grace
* Amiee Nicole
* Anastasha Kalil
* Annie Rachel
* Benaiah Darwin
* Branch Lionheart
* Carleigh
* Caroline Grace
* Carys and Paxton
* Cayla Annyse
* Chase
* Chloe Grace
* Colin
* Eden Marie
* Eden Rebekah
* Elisha Enrique
* Elizabeth
* Ella Christine
* Emily Jean
* Emma
* Ethan
* Evan Matthew
* Evan Parker
* Faith Hope alive for 3 months
* Fisher Seiji
* Gabriel Michael
* Hailee Kate
* Isaac Brigham
* Isabel Jane
* Jesaiah Alexander
* Jillian Grace
* Joy Marie
* Karinne Claire, she had acrania
* Kassidy
* Kendall Mackenzie
* Levi Jachin
* Lilly Elizabeth
* Lily
* Logan Quinn
* Mark Allen
* Maria and Julia
* Naveah Grace
* Noah Tobias
* Olivia Ryan
* Paige Miracle
* Palmer Joseph
* Peter Benedict
* Savannah Joy
* Seth
* Sophia
* Sophia Grace
* Timothy Frank
* Thomas
* Vitoria de Cristo alive for 2 and a half years
* William Jason

Videos and slideshows of babies with anencephaly

* Abigail Leigh
* Aliyah Joy
* Amelia Grace
* Angelo Honrubia
* Annie Rachel
* Aubrey Elizabeth
* Audrey Faith
* Aurelia Rose
* Austin John
* Bethany Grace
* Branch
* Brayley Jaine
* Caleb John
* Carleigh McKenna
* Dasha
* Dharma Lucille
* Ella Christine
* Esther
* Gabriel James
* Grace Mary
* Grayson James Walker
* Isaac Brigham
* John Paul
* Joshua Melvin
* Jude
* Luca Isaiah
* Marcus Miguel
* Noah
* Noah Tobias
* Olivia Faith
* Rachel Alice
* Raylee Jo
* Ryder Matthew
* Samantha
* Skylar Tianna
* Sophia Grace
* Taylor James Collins Taylor's head is uncovered on the pictures
* Truett
* Zion-Grace Elizabeth

Support groups / help for families who carry to term after a poor prenatal diagnosis:

* Anencephaly.info group on facebook
Support for parents who are carrying / did carry a baby with anencephaly to term

* 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.

* 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."

* Hearts & Halos
Provide emotional & financial support to families of anencephalic pregnancies/births through sharing our experience, knowledge & compassion, while working with the medical community towards the research and prevention of this defect. In short, once our charity collects enough donations (as we have just begun our fundraising efforts), the funds will be utilized for 2 things: Support of Duke University's Neural Tube Defect Study, which is the largest anencephaly study in the United States AND provide funds to pay for funeral expenses for those babies lost to anencephaly. Aside from donations, my husband and I would like to gain exposure for the charity in order to offer our moral support and experiences to those parents seeking it.

* One Day More
One Day More is an Ireland based support group made up of parents who received poor pre-natal prognoses for their babies. Some of our babies died shortly after birth, some before and some fortunately are still with us. We are here to support parents who find themselves in a similar situation.

* 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.

* 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.

* Every life counts
Online outreach based in Ireland. A place where parents can share their memories, their stories, their love and their pain; where their children are remembered and cherished;

* 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.

* 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

* Carry to term with a negative prenatal diagnosis

* When your baby dies
This site was created to inform bereaved families and the family, friends and health professionals who support them of the option for families to bring their stillborn or deceased baby home for time with the family and/ or a home funeral.

* All that love can do
Support for families who continue their pregnancy after a fatal diagnosis.

* Loss Doulas International
Advocates who help parents minimize regrets and maximize memories when a loved baby dies.

* I will hold you in my heart forevery
Baby book designed for babies who died before or shortly after birth

* Joshua's Little Buddies
ministry that provides support for parents of babies with anencephaly, as well as providing custom-made hats and onesies for these special babies.

* Sustaining Grace
Sustaining Grace is a non-profit organization who’s mission is to provide families who have received a terminal diagnosis during pregnancy free 3D/4D ultrasounds. The couple who founded the organization lost their daughter during pregnancy due to a terminal diagnosis.

* The Kendall Keepsake Foundations
The Kendall Keepsake Foundation is a non-profit organization with the purpose to provide a keepsake of personalized art to parents who expect or experience the loss of an infant at or shortly after childbirth. The art is created with the baby's handprints and footprints and embraces the legacy of the life that God has created. They also provide information and support to families that chose to carry to term babies with an adverse medical diagnosis.

Parenting plans (birthplans):

* Sample Advance Directive Birth Plan
* Sample birth/parenting plan from perinatalhospice.org
* St.Joseph Hospital's birth plan
* Texas Pediatric Society
* Benedict's birthplan
* Carleigh's birthplan
* Charlotte's birth plan
* Emery's birth plan
* Gracie Lynn's parenting plan
* Jenna Grace's parenting plan
* Michaela's birthplan
* Sophia Grace's birthplan

Medical information about anencephaly:

* Publications about anencephaly

* e-medecine Anencephaly article

* e-medecine Neural Tube Defects article

* NINDS Anencephaly Information Page

* 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.

Information about cephalic disorders:

* Cephalic Disorders

* Abigail
* Haley Faith
* Faith Aminah
* Joshua blog about his story
* Joshua slideshow
* Mitchell Charles
* Sami

Holoprosencephaly (HPE)
* Larson
* Olivia Hope
* Pearl
* Riley

* Rays of Sunshine, Hydranencephaly Information
* Global Hydranencephaly Foundation

* Benjamin's story

* Lillie Coonan

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

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

Babies with anencephaly as organ donors ?

* Purposeful Gift
Purposeful gift highlights information about organ and tissue donation for transplant, organ and tissue donation for research, and whole body donation for research. They also answer frequently asked questions, walk you through the donation process, provide accuarte information in regards to multiple types of donation, share donation success stories, and provide helpful resources to guide you on your journey.

* Anencephalic Infants as Potential Organ Sources: Ethical and Legal Issues
by the National Reference Center for Bioethics Literature, Georgetown University, Washington DC

* state-by-state-list for US transplant networks

* Anencephaly, is organ donation possible?

* Local organ procurement agencies in the US

* What happens after you donate organs to research?
Presentation of a mom who donated her son's organs to research

* Baby Amalya, a Multi-Organ and Gift of Body Donor, Continues to Give Life

* Family of retina donor meets researchers at Penn genetics lab

* Milk Donation

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, ...

Support for siblings:

* Special Delivery Book
Special Delivery is a children's story that describes different types of newborns, including those babies who live for only a short time. It is a tool that helps parents explain the loss of an infant to their children.

Support for grandparents, family and friends:

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

* "All that love can do" support group for grandparents

Advice for caregivers:

* What is perinatal hospice care about?

* Series on Stillbirth in "The Lancet"

* Guidelines to use when speaking with parents who have received a potentially life-limiting diagnosis for their fetus or child

* Dasha
Watch how the Coordinated Care for Kids team at Florida Hospital for Children helped the Dennis family celebrate their daughter Dasah in the face of a devastating diagnosis.

Support after the loss of a baby:

* Compassionate Friends
The Compassionate Friends is about transforming the pain of grief into the elixir of hope. It takes people out of the isolation society imposes on the bereaved and lets them express their grief naturally. With the shedding of tears, healing comes. And the newly bereaved get to see people who have survived and are learning to live and love again.

* MISS Foundation
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.

* Pregnancy and Infant Loss Remembrance Day

* Bereaved Parents' Network UK
More than anything, we want you to know that you’re not on your own. So whether you’re looking for help for you, your family, friends, church members, or simply information about the Network, we sincerely hope you find support and encouragement here.

* A little Lifetime Foundation Ireland
A Little Lifetime Foundation's aim is to provide information, services and support based on other bereaved parents’ and families’ experiences which can be different but there is a common link that is recognised – the loss of a son or daughter, brother or sister.

* Zoe Foundation
Our mission is to uplift families who have lost infants by easing the financial burden of funeral, burial, and/or cremation costs, as well as providing support through local groups and peer connections. (for families living in Georgia, Louisiana, Texas, or Indiana).

Pregnancy and parenting after loss:

* Rainbow Baby After Anencephaly
Support group on facebook. A Rainbow Baby is a healthy baby conceived after a pregnancy or infant loss. This group has been created to support anyone after having experienced a loss due to Anencephaly, and who is now considering or currently trying to conceive, currently pregnant with a rainbow baby or has already had their Rainbow baby.

About pictures and keepsakes:

* anencephaly.info pinterest page
with ideas for pictures, keepsakes and memories

* 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

* Heartfelt giving the gift of photographic memories
Heartfelt is a volunteer organisation of professional photographers from all over Australia dedicated to giving the gift of photographic memories to families that have experienced stillbirths, premature births, or have children with serious and terminal illnesses.

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

* Preemie patterns

* In Our Hearts Pendants
In Our Hearts Photo Pendants was created as a way to memorialize the babies who have left this world too soon. The photo pendants are made of a combination of a silver pendant tray with a glass tile overlay. For parents who do not have a photo of their child, I will be happy to create a pendant with their name. or other design on it in lieu of a picture.

* Baby Boards
Affected family whom started a small remembrance decor business in the name of their own son, Isaac. Remembrance decor with your baby's name.

* Project Palmer
In honor of her son Palmer who had anencephaly, Jenny started the Project Palmer. She She makes amazing crochet hats specifically for babies with anencephaly. The size has been adapted to the smaller size and shape of the heads of newborns with anencephaly.

* Birthweight Buddies
a ministry for grieving families that have lost their baby during pregnancy or shortly after birth. They create a special stuffed animal with the exact birth weight of the baby who has passed away to help bring comfort to the family after their loss.

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.

* What is perinatal hospice care?

* 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

* Choices Medical Clinic
The Perinatal Hospice concept has been pioneered by Dr. Byron Calhoun, MD. It is a multi-disciplinary approach to helping families with infants who have fatal or serious birth defects for which late term abortion is sometimes recommended. It is the life affirming, posititive and God-honoring way to care for a baby that will die during birth or shortly thereafter.
Choices Medical Clinic has embraced the Perinatal Hospice approach to dealing with fatal fetal anomalies and has provided this Life Affirming Service for dozens of families.

* Managing the challenges by Dr. Bryan Calhoun
The role of the maternal / fetal specialist

* Dasha
Watch how the Coordinated Care for Kids team at Florida Hospital for Children helped the Dennis family celebrate their daughter Dasah in the face of a devastating diagnosis.


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


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

* 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.

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Last update: November 9, 2015