Resources for Parents Who Continue a Pregnancy with a Fetal Abnormality
(Compiled by the PacNoRGG Prenatal Genetics Committee)

There are a number of resources, both in hard copy and on the Internet, for people who have learned during pregnancy that their child has a birth defect. Many of these resources are aimed at helping parents process the grief of losing a child. Some are written for parents making the difficult decision of whether to continue or terminate a pregnancy with a known fetal anomaly. However, there are few resources written specifically for parents who choose to continue a pregnancy knowing that their child has a fatal condition. This annotated bibliography was compiled in an attempt to direct caregivers to appropriate resources for families in this unique situation.

Genetic/ Rare Conditions Support Groups & Information Site http://www.kumc.edu/gec/support/abide.html
A section of the Genetic/ Rare Conditions Support Groups & Information Site, run through the Medical Genetics Department of the University of Kansas Medical Center, is specific for support groups for those who continue a pregnancy with an abnormality. (This may be a good place to check for updated information and new resources other than those included here.)

Heartbreak Pregnancies: Unfulfilled Promises (Brochure)
Available from:
Parent Education Department
Abbott Northwestern Hospital
800 East 28th Street
Minneapolis, MN 55407-3799
612/863-5964
This 38-page booklet is written specifically for parents who have learned before birth that their baby has a fatal anomaly. The booklet briefly covers the beginning stages of this experience, including the initial diagnosis and deciding whether or not to terminate the pregnancy (which they term "delivering early" or "birthing early"). However, most of the book addresses the emotions and experiences of parents who choose to continue a pregnancy knowing their baby will die before or soon after birth. There are several quotes from parents who have been through this experience, as well as clearly worded lists of points to consider at each stage, including planning for the birth, issues surrounding delivery, ways to create memories of the baby as a family member. There are sections titled "The actual birth," "Bringing your baby home to die," and "Saying goodbye." The booklet also addresses dealing with family and friends, feelings during the postpartum period, the grief that is often unique to fathers, issues that siblings face, and subsequent pregnancies. The absence of a discussion about D&E is noticeable, but overall this booklet is very well written and targeted specifically for this set of parents. The cost is about $4-5 for each booklet and is available in English, Spanish, and Russian.

Waiting with Love
http://www.erichad.com/wwl   
This supportive web site is for parents who are choosing to continue a pregnancy knowing that the baby will die before or shortly after birth and for families who learn their newborn will die. The site acknowledges these unique situations by featuring parents letters, access to sample birth plans and a chat room. Links to other resources and specific links for parents with multiples are included. The site does not provide specific information on how to cope with the complex emotional issues families would be experiencing at this time and is not specific to any one lethal condition.

Anencephaly Support Foundation
www.asfhelp.com
info@asfhelp.com 
This is a Christian support organization for families who choose to continue a pregnancy diagnosed with Anencephaly. The main features of this organization's web site are personal stories, most of which have a Christian slant, and links to support groups. The medical/research information provided by this site is very limited.

A Place to Remember: Support materials and resources for those touched by a crisis in pregnancy or the death of a baby
http://www.aplacetoremember.com
1885 University Avenue, Suite 110 
Saint Paul, MN 55104 
800/631-0973 Fax: 651/645-4780
Website includes:

• "Sharing" section where parents can post questions, comments. Most postings involve fetal or neonatal loss, sometimes from genetic conditions, sometimes from pregnancy complications such as incompetent cervix and cord entanglement. Postings appear to be from parents who have already experienced a loss, not parents who are continuing a pregnancy with known abnormalities. The dialog appears well monitored and kept up to date by the Webmaster. It seems like a fairly typical "chat room" with some misinformation but also some correct information and emotional support.

• "Remembrance" section where parents can post poems and short letters in memory of the children they have lost. Postings are limited to 200 words or less and only for deaths of children younger than three years.

• "Resources" section with contact information (email, websites, and US mail/phone) for other support groups and organizations

• "Product Mall" section that has items for caregivers and family/friends, including:
  Birth/death announcements, religious and secular
  Sympathy cards
  Brochures and booklets on dealing with grief over death of child
  Videos, music
  Funeral products (cards, memorial record, urns)

You can also request copy of their printed catalog. This section feels a bit commercial.

Hygeia: A journal for parenthood lost and a community for perinatal health, loss and bereavement
http://www.hygeia.org
This site is not specifically for those continuing a pregnancy with a known abnormality, but it may be helpful in a more general sense for processing grief and loss, and learning information about the medical condition the family is facing. Users must register to access the database of families who have experiences pregnancy or infant loss and wish to share their stories; all other parts of the website are open.
Website includes:

- "News" section with links to About Women and About Children in Medscape, Women's health in JAMA 
- Stories, poems, resources
- Links to other resources
- An area where healthcare professionals can post anonymously to help process their own grief in working with families experiencing loss
- Information about diseases/conditions (but only listed Werdnig-Hoffman as of 2/00)
- A "Journal of pregnancy loss information" with essays on different topics, written by healthcare professionals. Examples:

Placental Causes of Fetal Loss
David M. Lima, M.D.  
Department of Obstetrics and Gynecology
The Yale University School of Medicine

The Emotional Impact of Pregnancy Loss 
Andrea Seigerman, MSW, LCSW  
Senior Clinical Social Worker  
Yale-New Haven Hospital  

Prenatal Diagnosis and Screening 
Miriam S. DiMaio 
Senior Genetic Counselor 
Department of Genetics 
Yale University School of Medicine 
Maurice J. Mahoney, MD, JD 
Professor of Genetics, Pediatrics and Obstetrics and Gynecology 
Director, Prenatal Diagnosis Unit 

Griefwatch  
http://www.griefwatch.com
2116 NE 18th Ave.
Portland, OR 97212
503/284-7426
Fax: 503/282-8985 
webmaster@griefwatch.com
John@tearsoup.com 

This organization provides bereavement resources and products such as memory albums, announcement cards, urns for baby ashes and supportive literature. The web site provides an online catalog of items for sale. Online ordering is not possible, but an order form may be printed from the site. Fax or phone orders are accepted.  

(Of note, the Perinatal Loss web site is linked to Tear Soup, a web site for a book of the same name. This web site provides general supportive tips for individuals undergoing the grieving process, but is not specific to parents continuing a pregnancy with a likely lethal outcome.)

Centering Corporation  
http://www.centering.org  
1531 North Saddle Creek Rd
Omaha, NE 68104
402/553-1200
This corporation is a reliable source for perinatal bereavement/grieving literature. Products are available in English and Spanish. The web site allows individuals to request a free catalog, but the catalog is not online and online ordering is not yet possible.  

"Now that you've been told your baby has..." (Series of Brochures)
...Down syndrome
...Spina bifida
...Hydrocephalus
...Gastroschisis
...A Congenital Heart Defect
This series of booklets is available from the NSCG (http://www.nsgc.org/resources/list_orderform.asp) for a cost of $3.00 each or $10.00 for the set of five. These booklets are written by an experienced genetic counselor and are for those families choosing to continue a pregnancy diagnosed prenatally with one of these five conditions. The general slant of the information assumes that the baby will survive beyond birth. The booklets are well written with regard to the abundance of general medical information that is important to share with families in such situations. They only briefly mention the possibility that the baby may die and encourage parents to discuss with the care providers, family members, friends, and/or clergy how they would like the baby to be cared for in the event of death. Booklets can be ordered by mail and check only; an order form can be printed from the web site under the "Publications" section.

Families Forever
http://www.angelfire.com/poetry/talina/welcome.html  

Created by a mother whose daughter had a lethal condition, this web site has become a place for parents to share their experiences and to learn and heal through reading about other families' experiences. The site features a discussion board, a chat room, and more. The "Stories" page has contributed accounts from families. The "Waiting with Love" page describes emotions and practicalities of taking home babies who have fatal conditions. It also describes the turmoil and recovery of experiencing the death of your newborn as well as steps parents can take to hold on to memories of their child. The "Journals" page has links to journal entries from various parents that were made at various times, like diaries offering insight into how others coped. Families Forever also includes a list of "Angel links" to families' memorial web pages.

Help, Comfort & Hope after Losing Your Baby in Pregnancy or the First Year
(Book)
By Hannah Lothrop. (1997)
Fisher Books
This book discussed the grief associated with infant loss. The first part of the book is written for parents/families of the infant, while the second part is written for care providers. Several useful appendixes are included, such as "Rights of the parents when the baby dies; Rights of baby." One other appendix includes a detailed questionnaire, which is designed to help bereaved parents gain a better understanding of their relationship with the pregnancy and whether complicating factors may be impacting their grieving.

(Last Updated 1/4/06)