1. Genetic Loss and Donor Conception: A story of grief, hope, and moving forward Carrie Eichberg, Psy.D. Licensed Psychologist, Boise, ID

2. What is donor conception?  Sperm  Egg  Embryo  Known  Open Identity  Anonymous  Sperm  Egg  Embryo  Known  Open Identity  Anonymous

3. It’s a whole lot of families!  In 2010, 5,501 people were born as a result of ART cycles with donor eggs. And, that number has been growing steadily in the last 3 years.  Families created through donor sperm=?  Families created through embryo donation=?  Between1995 and 2007 51,223 children had been born through fresh ovum donation  In 2010, 5,501 people were born as a result of ART cycles with donor eggs. And, that number has been growing steadily in the last 3 years.  Families created through donor sperm=?  Families created through embryo donation=?  Between1995 and 2007 51,223 children had been born through fresh ovum donation Source: http://www.cdc.gov/art/ART2010/section4.htm,http://www.cdc.gov/art/ART2010/section4.htm Source: American Fertility Association: Fact Sheet, Talking to your kids about egg donation, Mendell, P. and Benward, J.

4. Percent of donor cycles by age of patient Source: Center for Disease Control, http://www.cdc.gov/art/ART2010/section4.htm

5. Psychological impact of infertility  Frustration  Anger  Depression  Anxiety  Isolation  Relationship conflict  Sexual dysfunction  Frustration  Anger  Depression  Anxiety  Isolation  Relationship conflict  Sexual dysfunction

6. Reproductive loss  Loss of a child  Loss of a part of oneself  Loss of a life with the child  Loss of the fantasized child  Loss of hopes and dreams of the family to be  Loss of a child  Loss of a part of oneself  Loss of a life with the child  Loss of the fantasized child  Loss of hopes and dreams of the family to be

7. Six primary losses of infertility  Control  Genetic continuity  Jointly conceived child  Physical expectations of pregnancy and feeling the power to impregnate  Emotional expectations of shared pregnancy, birth, breastfeeding  Opportunity to parent  Control  Genetic continuity  Jointly conceived child  Physical expectations of pregnancy and feeling the power to impregnate  Emotional expectations of shared pregnancy, birth, breastfeeding  Opportunity to parent Source : Patricia Johnston, Adopting after Infertility, 1994

8. Why don’t you “just adopt”?  Older patients  Not selected  Same sex couples  Singles  Failed adoptions  Older patients  Not selected  Same sex couples  Singles  Failed adoptions

9. Reasons people choose to use a donor  Desire to experience pregnancy  To have 50% genetic connection  Control of intrauterine environment  Avoid failed adoption  Long wait  Desire to experience pregnancy  To have 50% genetic connection  Control of intrauterine environment  Avoid failed adoption  Long wait

10. Family preparation To create healthy families, we all must try to help patients be as prepared as they can for lifelong issues, differences, challenges, and blessings experienced by donor conceived families.

11. Challenges From the very moment a baby is born, the comments about physical appearance begin.  Oh, she has your eyes!  Who does he look like?  He’s very tall!  Where does she get her ___ hair?  You were so lucky to get pregnant at your age.  Does her father have blond hair?  Did you know the real mother/father?

12. Issues and blessings  Deciding with whom and when to share information about DC  Answering your child’s questions  Helping them to understand donor conception  Helping them with feelings of anonymity/possibility of never having information about one’s genetics  Managing the triggers of infertility  Knowing how to talk with kids about your family building story  Or, living a life with a secret  Deciding with whom and when to share information about DC  Answering your child’s questions  Helping them to understand donor conception  Helping them with feelings of anonymity/possibility of never having information about one’s genetics  Managing the triggers of infertility  Knowing how to talk with kids about your family building story  Or, living a life with a secret

13. Disenfranchised grief  Grief that is not publicly acknowledged  Invisible loss, invisible sadness, invisible process  No body, no name, no ritual; no wake, Shiva, or memorial  No one brings casseroles to your house  No one says: I am so sorry for your loss  Grief that is not publicly acknowledged  Invisible loss, invisible sadness, invisible process  No body, no name, no ritual; no wake, Shiva, or memorial  No one brings casseroles to your house  No one says: I am so sorry for your loss

14. Isolation happens  When others don’t know about the loss  More commonly, others don’t understand the loss  When others don’t know about the loss  More commonly, others don’t understand the loss

15. Gender differences Marriage problems that arise after a reproductive loss are often the result of:  Different ways men and women respond to loss  Different ways each expresses grief Marriage problems that arise after a reproductive loss are often the result of:  Different ways men and women respond to loss  Different ways each expresses grief

16. Men have feelings, too  Men frequently think about the lost child, the unfairness of the situation, have difficulty concentrating, and experience periods of anger  Men feel as if there is no room for their feelings because they view their role as only being supportive of their female partners  “We can’t both fall apart.”  Men frequently think about the lost child, the unfairness of the situation, have difficulty concentrating, and experience periods of anger  Men feel as if there is no room for their feelings because they view their role as only being supportive of their female partners  “We can’t both fall apart.” Janet Jaffe, Ph.D. “How Do You Grieve a Reproductive Loss” February, 2008

17. The hardest part about reproductive loss Saying goodbye to someone to whom we never said hello

18. The fantasy child  Most people have a very concrete image of the child that they have been trying to bring into the world.  Gender, age, personality, looks, talents  Most people have a very concrete image of the child that they have been trying to bring into the world.  Gender, age, personality, looks, talents

19. Healing exercise  Write a letter, or painting, or book or…  Bring the child to life  Say goodbye  Write a letter, or painting, or book or…  Bring the child to life  Say goodbye

20. Create a ritual Do something with the letter  Plant a tree or bush and bury the letter under the plant  Put it in your favorite shade tree where you hike  Read it to the ocean and feed it to the fish  Attend a place of worship, light a candle, say a prayer  Purge it  Share it with someone Do something with the letter  Plant a tree or bush and bury the letter under the plant  Put it in your favorite shade tree where you hike  Read it to the ocean and feed it to the fish  Attend a place of worship, light a candle, say a prayer  Purge it  Share it with someone

21. The release  The relief is usually palpable  Patients feel better  Not a panacea, but helpful to give words and meaning to the painful feelings that they have been experiencing  The relief is usually palpable  Patients feel better  Not a panacea, but helpful to give words and meaning to the painful feelings that they have been experiencing

22. What staff can do to help  Acknowledge the loss. Don’t diminish or dismiss.  Understand it is similar to a death in the family, but the loss is invisible  The patient does not have the words to describe the feeling, or doesn’t believe anyone will understand  Don’t try to fix it  Refer to mental health professional for educational consultation and/or counseling for all genetic or gestational losses  Acknowledge the loss. Don’t diminish or dismiss.  Understand it is similar to a death in the family, but the loss is invisible  The patient does not have the words to describe the feeling, or doesn’t believe anyone will understand  Don’t try to fix it  Refer to mental health professional for educational consultation and/or counseling for all genetic or gestational losses

23. Postpartum help  Understand there are unspoken expectations and fantasies of the baby and connection to the baby  Normal developmental processes and stumbling blocks are questioned  Understand there are unspoken expectations and fantasies of the baby and connection to the baby  Normal developmental processes and stumbling blocks are questioned

24. What not to say  Once you hold your baby, you won’t even think about it.  No one needs to know.  You will have another baby.  It will look just like you.  You’re still young.  Once you hold your baby, you won’t even think about it.  No one needs to know.  You will have another baby.  It will look just like you.  You’re still young.  Maybe it will still happen. You never know…  It is all for the best.  It is God’s plan.  Don’t feel that way.  You’ll get over it.

25. Experiences of adolescents and adults conceived by sperm donation  Age of disclosure is important in determining the feelings of donor-conceived persons about their donor conception. Golombok, S., Kramer, W., Freeman, T. and Vasanti, J. The experiences of adolescents and adults conceived by sperm donation: comparisons by age of disclosure and family type: Hum. Reprod. (2009) 24 (8): 1909-1919.

26. To tell or not to tell?  Family secrets are destructive  Importance of medical history  Right to know one’s own genetics  Risk of accidental disclosure  Family secrets are destructive  Importance of medical history  Right to know one’s own genetics  Risk of accidental disclosure

27. Healthy families  Are created by people who know and understand the ways in which non- genetic families are the same as, and different from, families created the easy and cheap way  Understand how donor conception is similar to, and different from, families formed by adoption  Have said goodbyes and resolved grief  Are created with pride and excitement  Understand the difference between secrecy and privacy  Are created by people who know and understand the ways in which non- genetic families are the same as, and different from, families created the easy and cheap way  Understand how donor conception is similar to, and different from, families formed by adoption  Have said goodbyes and resolved grief  Are created with pride and excitement  Understand the difference between secrecy and privacy

28. They don’t stay babies forever…  Parents need to understand how to address long term issues  Difficult to envision a child as an adult  Needs change over time  Parents need to understand how to address long term issues  Difficult to envision a child as an adult  Needs change over time

29. Resources  PVED-Parents via Egg Donation; www.pved.orgwww.pved.org  Donor Sibling Registry; www.donorsiblingregistry.comwww.donorsiblingregistry.com  American Fertility Association; www.theafa.orgwww.theafa.org  Resolve; www.resolve.org  Donor Conception Network; www.dcnetwork.orgwww.dcnetwork.org  PVED-Parents via Egg Donation; www.pved.orgwww.pved.org  Donor Sibling Registry; www.donorsiblingregistry.comwww.donorsiblingregistry.com  American Fertility Association; www.theafa.orgwww.theafa.org  Resolve; www.resolve.org  Donor Conception Network; www.dcnetwork.orgwww.dcnetwork.org