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

What is donor conception?

Sperm Egg Embryo Known Open Identity Anonymous

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

Source: 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.

Source: Center for Disease Control, http://www.cdc.gov/art/ART2010/section4.htm

Percent of donor cycles by age of patient

Age 39 Age 40 Age 41 Age 42 Age 43 Age 44 Age 45 Age 46 Age 47 Age 48 >48

10.1 12.918.1

24.131

45.2

58.1

72.2 75.6

87.5 91.2

Psychological impact of infertility

Frustration Anger Depression Anxiety Isolation Relationship conflict Sexual dysfunction

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

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

Source : Patricia Johnston, Adopting after Infertility , 1994

Why don’t you “just adopt”?

Older patients Not selected Same sex couples Singles Failed adoptions

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

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.

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?

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

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

Isolation happens

When others don’t know about the loss More commonly, others don’t understand the loss

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

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.”

Janet Jaffe, Ph.D. “How Do You Grieve a Reproductive Loss” February, 2008

The hardest part about reproductive loss

Saying goodbye to someone to whom we never said hello

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

Healing exercise

Write a letter, or painting, or book or… Bring the child to life Say goodbye

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

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

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

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

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.

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.

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.

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

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

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

Resources

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