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

* Anencephaly Information in Indonesian!

Stories about babies with anencephaly:

* Alfonso
* Anastasia
* Andrew
* Angela
* Boston Michael
* Caleb Michael
* Colby
* Cyril
* David alive for 53 days
* Dylan Jonathan
* Ebenezzer
* Emelia
* Emery
* Emily Rose
* Emma and Connor
* Faith Lynn
* Freya
* Gabriel
* Gabriel James
* Grace Elisabeth
* Gracie Jo
* Grace Lily
* Hazel Elizabeth
* Jasmine Anna
* Jenna
* Jessica Marie
* Jessie
* John Paul
* John Raphael
* Josephine Blevins
* Laila Grayce
* Lailah Joy
* Mary Elisabeth
* Mary Magdalene
* Mary Therese
* Matthew
* Michaela Hope
* Nathan
* Oisin Phair
* Silas Lee
* Sofia Ann
* Talia Finn
* Wyatt Gabriel
* Weston

Twins:

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

Texts and stories written by fathers of a baby with anencephaly

* 4 days to live Ed O'Donoghue writes about his twins
* 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
* Baby Jack's story by Jack's father Brad
* Glorifying God in Life and Death by Joses' father Seth
* My first son, a pure memory text and podcast

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

* Sufficient Grace Ministries
Because every life matters, we are here...
Perinatal hospice support for families receiving a life-limiting diagnosis in pregnancy and emergent support for those who experience the loss of a baby in any gestation
In-person support from professionally-trained volunteers (doulas) with 24-hour availability who will attend the birth, supporting the parents and will help foster bonding and memory-making during baby's brief life.
Assistance in forming a birth plan stating family's wishes for pregnancy, labor, birth, and beyond
Resources and specifically-designed Dreams of You memory-making materials shipped worldwide.
Remembrance Photography - to capture every precious moment of baby's time here
Walking With You Bereavement support groups both online and in-person

* 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.

* Embracing Grace
Embracing Grace was founded by families who have experienced the heartbreaking news of a prenatal diagnosis. We offer peer support and a network of resources to women and families who choose to carry their child to term.

* Carrying to term
When you're facing a terminal prenatal diagnosis, the decision to carry a pregnancy to term is often accompanied by a range of questions and emotions. We are a non-profit organization dedicated to helping you gather the support, tools, and resources necessary to navigate the months ahead – all while embracing and celebrating precious memories with your baby.

* Zoe Faith carried by love
It might not be the same as imagined, but we believe that memories can still be made and each memory allows bonds to form, love to grow and hope to flourish. We offer families who receive an incompatible with long-term survival diagnosis the opportunity to experience moments they had hoped of sharing with their babies. Families are invited to share moments they had hope to spend together and we do our best to make them happen during their final months of pregnancy.

* Elaina's light
Elaina's light provides scholarships to families moving through a difficult time. (death in the family, child loss, severe illness, severe injury, etc.), childcare scholarships for families affected by the life limiting diagnosis of anencephaly, hats for babies born with anencephaly, and wants to circulate kindness in an effort to provide hope to those who need it in the community

* Abel speaks
Founded by a couple in Texas who found themselves in that very position, Abel Speaks was born out of this experience and exists to walk with parents who have chosen to carry a child with a life-limiting diagnosis. Every child's life can be beautiful and meaningful, no matter the length. On this road where you never thought you'd find yourself, you are not alone. We are here to walk with you.

* 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.

* 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.

* 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.

* The Anencephaly Net

* Life meant to Live
Free ultrasounds for moms of unborn terminally ill babies in Springfield MO. At Life Meant to Live, we have the privilege of working with people who are in a very unique situation. Often, women who are referred to our office have received a negative or terminal diagnosis for their unborn baby. Families who come to Life Meant to Live are looking for additional education, a chance to see their baby outside of a hospital setting, a positive experience to help outshine the negativity surrounding their pregnancy, and, often, closure.

* Leaves in Time
Based in Colorado, Leaves in Time is a non profit with the mission to optimize the grieving process and support families with a lethal fetal diagnosis during the prenatal period, birth, and also the postpartum and healing journey.

Parenting plans (birthplans):

* Sample Advance Directive Birth Plan
* Sufficent Grace Ministries Perinatal Hospice Birth Plan Form
* CarryingToTerm.org Birthplan creator very detailed, but you have to register to access the plan
* Sample birth/parenting plan from perinatalhospice.org
* St.Joseph Hospital's birth plan
* Texas Pediatric Society
* String of Pearls birth plan
* Carleigh's birthplan
* Charlotte's birth plan
* Emery's birth plan
* Gracie Lynn's parenting plan
* Jenna Grace's parenting plan
* Kendall's birthplan
* Michaela's birthplan
* Sammy'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:

* Child Neurology Foundation
At Child Neurology Foundation, we are committed to helping children and their families living with a neurologic condition receive the best quality of care - and achieve their highest quality of life - by providing information, education, and one-on-one support when it's needed most.

Encephalocele
* Abigail
* Haley Faith
* Faith Aminah
* Jonathan
* Joshua blog about his story
* Sami

Holoprosencephaly (HPE)
* Larson
* Olivia Hope
* Pearl

Hydranencephaly:
* Rays of Sunshine, Hydranencephaly Information
* Global Hydranencephaly Foundation

Microcephaly:
* Benjamin's story

Iniencephaly:
* 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

* Prenatal Vitamins, Why You Need Extra Folic Acid, Iron & Essential Nutrients

* The PONTI study: inositol and prevention of NTDs

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

* Local organ procurement agencies in the US

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

* Milk Donation

* Sarah Gray: How my son's short life made a lasting difference
After Sarah Gray's unborn son Thomas was diagnosed with anencephaly, a terminal condition, she decided to turn her family's tragedy into an extraordinary gift and donate his organs to scientific research. In this tribute to life and discovery, she shares her journey to find meaning in loss and spreads a message of hope for other grieving families.

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, ...

* The Skye High Foundation
The Skye High Foundation was set up to support families during and after the loss of a twin, triplet or multiples. They created the purple butterfly cot card, which is to be placed in an incubator or cot in memory of their sibling. The cot card is used in conjunction with a poster that is placed around maternity and neonatal units, which explains the meaning of the purple butterfly. The cot card allows families the opportunity to make others around them aware of the journey they are going through. In addition they have created packs which can be sent to either families or hospitals.

* ‘The Story of My Purple Butterfly' – by Kate Polley
The book, a story of hope and comfort, has been written for surviving twins, to help them to talk about and remember their twin. The purple butterfly represents the twin and is a reminder that although no longer here on earth, their twin is always around them. It is a book of love and remembrance and helps families to talk and share their feelings around loss and grief, providing a happy memory to support their loss.

* Neonatal Research - The Butterfly Project
Most women who have a multiple pregnancy (twins, triplets or more) do not have complications, but sadly, every day in the UK at least one baby from a multiple pregnancy dies. We wanted to better understand what it felt like to be a parent who has had to face such a difficult challenge. We spoke to parents who had lost at least one baby, and had a least one surviving baby from a multiple pregnancy, and we spoke to midwives, doctors and nurses to hear about their experiences.

* When a twin or triplet dies"
A booklet for bereaved parents and twins, edited by the "Multiple births foundation".

* Bereavement from a twin pregnancy
Guidelines for health professionals, edited by Neonatal Research - The Butterfly Project.

* Twinless Twins
The Twinless Twins Support Group International™ (TTSGI) provides a safe and compassionate community for twinless twins to experience healing and understanding. TTSGI also provides support for twins and other multiples who have lost their twin due to death at any age. A special section about early twin loss provides articles and information for the whole family.

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.

* Hanna's House UK
Hannah's House is a place of refuge supporting children after the death of a sibling through any kind of babyloss. We help bereaved parents support their children and have hope after loss.

Support for grandparents, family and friends:

* Anencephaly Hope Grandparents support
A group for grandparents who struggle with a unique grief, carrying the burden of seeing their child suffering and trying to cope with the loss of their grandbaby.

* "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

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.

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.

* 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.

* 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.

* 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

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

Grief

MISS foundation
Counseling resources, advocacy information, research on traumatic grief, education for healthcare providers and community members, and support services for those grieving the death, or impending death, of a child.

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

* What's your Grief
To put it simply, this website is about grief. As mental health professionals who have experienced significant losses ourselves, we know individual grief is unique and there is no "right" way to cope. Our goal is to create a community that provides hope, support, and education to anyone wishing to understand the complicated experience of life after loss.
Parenting while grieving, a survival guide
Emotional Numbness during Grief

others:

* 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 January 23, 2024

Links about anencephaly