The following organizations may help you walk through this difficult process.
- Donation Resources
- Resources For Expectant Families
- Funeral Assistance Organizations
- Facebook / Support Groups
- Anencephaly-Specific Resources
- Recovering After A Loss
Donation Resources
International Institute for the Advancement of Medicine (IIAM) (http://www.iiam.org/) is a non-profit organization which assists in placing organ and tissue donations with medical and scientific researchers when donations are unable to be used for transplant. IIAM has a special neonatal donation program designed to serve families facing infant loss. Their compassionate and knowledgeable staff will team with your local organ procurement organization and will assist you as you walk through the donation process.
Map to all Organ Procurement Organizations (OPOs) in America (http://www.aopo.org/click-state-find-opo-a6) The Association of Organ Procurement Organizations provides a list of all participating OPOs in the United States. This link will bring you to a map of the United States where you can click on your state for a list of OPOs near you. Connecting with your local OPO is the first step in pursuing donation opportunities.
Donate Life America (http://donatelife.net/) is a national non-profit organization which promotes organ donation and provides resources for individuals considering donation regardless of age or type of donation.
Resources For Expectant Families
Neonatal Donation Preliminary Information Document – This form was created as a tool to assist parents in providing necessary information to the OPO and to help facilitate communication when there is a desire to purse donation. Parents can easily print this form, fill it out, and give it to their OPO, or they can use it as a guide when creating their own form. Please realize this is not a legal document and does not replace mandatory paperwork from the OPO. (Also available in Spanish)
Questions to Ask Your OPO – This form was created as a guide to assist families know what questions to ask when they meet with their OPO. This two page form also has places for parents to write the answers to each question for easy use. Please realize this form does not cover every situation, and other questions may need to be asked. (Also available in Spanish)
Request to Contact Organ Procurement Organization – This form was created to assist parents when it is necessary to ask their Obstetrician/Midwife to contact the OPO to coordinate plans prior to a donation. Parents can easily print this form, fill it out, and give a copy to their health care provider and a copy to the OPO, or they can use it as a guide when creating their own form. Please realize this is not a legal document and does not replace mandatory paperwork from healthcare providers or OPOs.
Neonatal Donation Fact Sheet For Medical Professionals – This fact sheet was created specifically for medical professionals (OBs, Genetic Specialists, NICU Doctors, etc.) to raise awareness about what is currently possible for potential neonatal donors. Feel free to print this PDF document and share with your medical professionals
Sufficient Grace Ministries (http://sufficientgraceministries.org/) is a non-profit organization whose goal is to serve families who have suffered a loss at any gestation age by providing free Dreams of You items, memorial items, proper size clothes, and comfort bears (free of charge). Sufficient Grace also provides free bereavement doula services and photography services for families in Ohio who have experienced an unexpected loss, or are pregnant with a baby who has received a terminal diagnosis.
Prenatal Partners for Life (http://www.prenatalpartnersforlife.org/) is a non-profit organization whose goal is to encourage families to carry babies to term after receiving a negative or terminal diagnosis. The website provides information, stories, and support aids for families. Prenatal Partners for Life also provide free “gifts of love” care boxes for families upon request. Some items include: blankets, a CD which can be used at funeral/memorial services, a book, and informational pamphlets.
String of Pearls (http://stringofpearlsonline.org/) is a non-profit organization whose goal is to support families after receiving a terminal or life-limiting diagnosis. String of Pearls provides keepsake kits to use at the hospital, provides support and strategies for working with your local hospital/OB, assists in funeral planning, and provides grief support.
The Solace Foundation (http://www.thesolacefoundation.org/) is a non-profit organization whose goal is to support families during or after a loss. The Solace Foundation provides care packages to families, including special items for both the mom and dad. They also provide a variety of resources on their website.
Sustaining Grace (http://sustaininggrace.org/) is a non-profit organization whose mission is to provide families who have received a terminal diagnosis during pregnancy with a free non-medical 3D/4D ultrasound. Non-medical ultrasounds provide families with special time to bond with their baby while they are safe within the protection of the womb. They are willing to assist you regardless of your location in the United States. PLEASE NOTE: Sustaining Grace works best over the phone. They may or may not respond to e-mails. Please CALL to receive more information and to learn how to schedule an ultrasound.
All That Love Can Do (http://allthatlovecando.blogspot.com/) is a blog run by an infant loss mother. It has many resources and ideas for families who are carrying to term. It also shares stories of hope written by mothers who have experienced loss. This blog is great for any family regardless of diagnosis.
Still Birthday (http://www.stillbirthday.com/) provides a variety of resources, support tools, memory-making and celebration of life ideas, birth plan examples, and information about infant loss at a variety of gestational ages. This site is good regardless of diagnosis and can specifically help you if you experience a sudden loss during pregnancy.
Now I Lay Me Down To Sleep (https://www.nowilaymedowntosleep.org/) is a group of photographers who donate time and services to families dealing with infant loss. NILMDTS will connect you with a photographer in your area. Many photographers will provide bereavement photography at the hospital the day your baby is born. Some will also provide free maternity photography sessions. This is a great way to capture special memories.
Ashley’s Angels (http://www.ashleys-angels.org/) is a charity whose goal is to provide families with beautiful handmade burial gowns, burial blankets, and a number of other memory making items free of charge after the loss of a baby.
“Keepsakes and Memories” Pinterest Board (http://www.pinterest.com/anencephaly/keepsakes-and-memories/) was created by a infant-loss mother. It is full of memory making and keepsake ideas to help you honor your baby, both before and after birth.
“Perinatal Bereavement” Pinterest Board (http://www.pinterest.com/puddytatluvr/perinatal-bereavement/) is an excellent resource for those experiencing pregnancy loss and those that work with them. This is one of many Pinterest boards on this topic.
Funeral Assistance Organizations
David’s Gift (http://www.davidsgift.org/) is an organization with the mission of providing funds to cover the cost of funeral expenses for families experiencing or facing the loss of a child.
The Zoe Foundation (http://www.zoe-foundation.org/) is a non-profit organization which serves families in Georgia, Louisiana, Texas, South Carolina, and Indiana who have lost infants by easing the financial burden of memorial costs, as well as providing support through local groups and peer connections.
The TEARS Foundation (http://www.thetearsfoundation.org/) is a non-profit organization that seeks to compassionately assist bereaved parents from the states of Alaska, Arizona, Colorado, Florida, Idaho, Illinois, Michigan, Nevada, New Jersey, New York, or Washington State with the financial expenses they face in making final arrangements for their precious baby who has died.
Facebook / Support Groups
All That Love Can Do (https://www.facebook.com/groups/allthatlovecando/) is a closed Facebook group specifically for families who have chosen to carry to term after receiving a terminal diagnosis. You must request to be added as a member.
Birth Defect Registry Support Group List (http://www.birthdefects.org/parentservices/supportgroups.php) is an extensive list of support groups covering 78 different birth defects. Click on the specific birth defect you are interested in to find links to support groups and helpful websites regarding that birth defect.
Anencephaly.info (https://www.facebook.com/groups/anencephaly.info/) is a closed Facebook group specifically for families who are choosing to carry to term after receiving a diagnosis of anencephaly. You must request to be added as a member.
Anencephaly Angels (https://www.facebook.com/groups/40473540008/) is a closed Facebook group for anyone who has been affected by anencephaly (including parents, grandparents, aunts/uncles, etc.). This is a mixed group of families who have carried to term as well as terminated after receiving anencephaly as a diagnosis.
Project Palmer (https://www.facebook.com/pages/Project-Palmer/337249116318905) is a ministry which creates hats, photo props, and blankets for parents who have received a fatal diagnosis or grim prognosis. The ministry specializes in creating hats for babies with anencephaly to ensure proper fit for their unique needs and smaller head size.
Faces of Loss (http://facesofloss.com/) is an organization whose goal is to help families share their story of pregnancy or infant loss and connect with others. They provide an extensive list of resources on their site, as well as share hundreds of stories. They also sponsor local support groups which hold in-person meetings. Many of the local chapters also have private Facebook groups which you can request to join.
Anencephaly-Specific Resources
What is Anencephaly? Anencephaly is a rare neural tube defect that happens around the 28th day after conception. It happens when the neural tube fails to close properly. This causes the baby’s skull not to form, beginning at the eyebrows and extending all the way to the base of the neck. The lack of skull/scalp leaves what little brain mass that has developed (typically less than 1/3 of a typical brain mass) exposed to the acidic amniotic fluid, and it is eaten away during the pregnancy. Babies with this condition typically pass in utero or live only a few hours (sometimes a few days) after being born.
Anencephaly.info (http://www.anencephaly.info/) is one of the most comprehensive anencephaly websites available. It provides stories, birth plans, a variety of information, other resources, and answers to frequently asked questions. This page was created by a mother who lost her daughter to anencephaly over ten years ago, and it has been invaluable to many people who have received a diagnosis of anencephaly.
Duke University (http://dmpi.duke.edu/anencephaly) provides in-depth information about anencephaly. Duke has been researching anencephaly for over ten years. They currently have an on-going research study in which families can participate by donating blood samples from parents and their baby. Duke’s goal is to find genetic and environmental factors which may cause anencephaly.
For more information on the study, you can contact the study coordinator:
Heidi Cope
Phone: (919) 684-0655
E-mail: chg_ntd@dm.duke.edu
Recovering After A Loss
Compassionate Friends (http://www.compassionatefriends.org/) is an organization with the goal of supporting families who have experienced the loss of a child (regardless of age). They provide extensive resources online, as well as sponsor over 660 local chapters across the United States which have in-person support groups that meet regularly.
Project PoppySeed (https://nursing.wsu.edu/research/student-research/the-poppyseed-project/) is an exploration of perinatal grief resulting from the loss of a pregnancy or baby to anencephaly.
Remembering Our Babies (http://www.october15th.com/) is a website to provide support, education, and awareness for families suffering from pregnancy or infant loss. They help families create special ways of honoring their babies on October 15th (the national day of remembrance for pregnancy and infant loss) and year round. The site highlights special events, provides resources, and sells remembrance items.
Unspoken Grief (http://unspokengrief.com/) is a website created for families to share their story of pregnancy or infant loss. The site has both a web forum and a place for you to submit your story of loss. The site provides many stories to read, as well as resources and support tools.
Please note that the websites, organizations, resources, ministries, and support groups listed above do not necessarily represent the views and/or beliefs of Purposeful Gift. Being included as a resource does not constitute a recommendation or endorsement by Purposeful Gift.