Now What Do I Tell Her?All The Things to Do to Use Donor Egg

Maria M Jackson MA, RN

Learning Objectives

Understand the emotional impact of infertility and the transition to using donor gametes

Discuss potential gender differences and societal influences on each partner

Identify concerns and obstacles that impede the transition

Explore strategies to help patients become more comfortable with this reproductive option

What is the nurse’s role in the donor egg process?

Role of the nurse in DE is multi-faceted Liaison Educator Sounding board Coordinator Counselor

~50% of SART member clinics have MHP on staff Grief counseling integral part of role

Failed cycles Miscarriages

Steps in the Process

Acknowledge their emotions Normalize their feelings Identify their concerns/ obstacles Give them resources Give them time

Case Study

Dr. Jones comes to your door with Mr. & Mrs. Smith in tow. They have done 3 IVF cycles and have been unsuccessful. Today’s consultation was to discuss next steps.

She is visibly upset and trying unsuccessfully to keep her emotions in check. He is looking at his watch and appears to be in a hurry to leave. Dr. Jones tells the couple he’s going to put them in your capable hands and you’re going to tell them everything they need to know about using donor eggs.

He has already given them a brief overview of the process anddiscussed other options including adoption and living childfree.

So how do you begin the conversation???

How do you begin the conversation?

“Mary, I see you’re upset. This process is difficult and challenging. It can feel like an emotional punch in the gut…”Raw emotions can be uncomfortable to witness

Crying is an appropriate response

Using donor eggs is not a cure for her infertility

Acknowledge the emotions

“Mary, I see you’re upset…” A diagnosis of infertility has been likened to Kubler-Ross’ stages of death and dying because it involves multiple losses on multiple levels

The emotional response to loss is mourning and grieving

Couples may not recognize it as such They may need permission to jump off the

treatment treadmill for a while and just experience the emotions

Unlike traditional mourning and grieving the child was never born…so how do you mourn and

grieve a dream?

Dream Reality

Case Study Continued…

The couple is seated in your office. Mary, an attorney is crying and her husband John, a bond trader is busy texting. She and John have been married for about 10 years.

Mary got pregnant in law school before meeting John and terminated the pregnancy. They decided as a couple to delay childbearing until they were established in their careers despite pressure from their parents to give them a grandchild.

Mary admits she never expected to be infertile; she has planned her life out with great care and was shocked when she didn’t conceive. She shares that the IVF process is having a negative impact on all aspects of her life and now Dr. Jones is recommending egg donation. She’s just not sure she can use someone else’s eggs.

Acknowledge the emotions

Common emotional responses to infertility Depression Anger Guilt Confusion Loss of control Questioning the meaning of your relationship Failure

Normalize Their Feelings

It’s normal to have fears, concerns, doubts when using a third party to conceive

This is a nontraditional form of family building No one expects to give over control of their

reproduction to strangers It may take some time to get comfortable with

the idea of using another person’s eggs Using donor eggs is not a cure for infertility

Lot’s of folks are using the donor egg option

SART Clinic Summary Report 2012Donor Oocytes (all ages)

Fresh Embryos Thawed Embryos

Transfers 9250 7608LBR/ET 56.6 37.2Avg # embryos/ET 1.8 1.8

https://www.sartcorsonline.com

Gender differences

Case Study Continued…

John has finally put down his phone at Mary’s urging. He reminds her this process is expensive so his job is important. Mary asks him how he feels about using donor eggs and he replies,

“I’m willing to do whatever it takes to have a child. We can choose the donor and you carry the pregnancy. It’s not what I expected but it seems like the best option. We’ll have a much better chance of conceiving.”

Mary continues to cry and tells John she feels as if she’s let him down that this is all her fault. He reminds her his sperm count wasn’t the best so he share’s some of the responsibility.

Gender Differences

Mary Role failure

Pregnancy is played out in a woman’s body Impacts self-image

Women practice playing Mommy from childhood

Experience more stress May need to talk (too much) about

infertility to cope with the diagnosis Social support is important

Peterson et al Hum Reprod 2006; 21: 2443-2449

Gender Differences

John Distancing more often used by men to cope

Not comfortable exposing themselves emotionally

May work longer hours May consume more alcohol

Self-control and problem solving typical He wants to fix this for his partner

His coping style does not mean he’s less invested

Identify Obstacles

Common Obstacles

Unresolved issues surrounding the couple’s infertility

Societal attitudes Religious restrictions Age

Fears about the donor Honesty Reliability Can I see a picture?

Concept of multiple parents Concerns about bonding with the baby Is it going to work????

Unresolved issues surrounding the couple’s infertility Grief work is an integral part of the process

Many losses Closeness as a couple Confidence in their ability to accomplish an

important life task Both must mourn the loss of the woman’s

genetic contribution Unsure how to help each other cope with the

complex personal & medical issues Unexpressed anger, fears or concerns about

using donor gametesMahlstedt & Greenfeld Fertil Steril 1989; 52: 908-914

Strategies

Mandatory pyscho-educational meeting with MHP before they can cycle They don’t know what they don’t know

In person or online support groups Resolve: http://www.resolve.org/support-

and-services/ The American Fertility Association: http://www.theafa.org/advice-support/

Societal Attitudes

“Her horrifying personal story about using a host of assisted reproductive technologies (ART), including in vitro fertilization (IVF) and egg donation, in an effort to have a child is part memoir and part exposé of an unscrupulous, high-profit industry. It’s a compelling read.”Book describes a 6 year struggle with infertility that ended with the couple adopting

Societal Attitudes

“Blood is thicker than water”Does society favor biological ties?

“At least one of us will be biologically connected”Are we as a society ambivalent about non-traditional family building?

Will the grandparents love this child the same? Will this child be accepted or treated differently?

My religion doesn’t condone the use of donor gametes under any circumstances

If God wanted me to be pregnant it would have happened

Strategies

In 2014 families are created in many ways We assume a biological and genetic connection

that may not be present A grandparent’s ability to love their grandchild is

not dependent on a biological connection Fear of parent’s rejection may be related to life-

long issues (rejection/criticism) rather than the child’s means of conception

Religious sanction for ART may never happen If God didn’t want people to have children these

technologies would never have been developed

Mahlstedt & Greenfeld Fertil Steril 1989; 52: 908-914

Is She Too Old For This?

“Old parents face a version of the judgment implicit here: They have no idea what they’re in for. More than that: This is just not right. A new child may be a blessed event, but when a 50-year-old decides to strap on the Baby Björn, that choice is seen as selfish and overwhelmingly prompts something like a moral gag reflex. “

How old is too old?

Concerns for the mother’s health Careful screening required Adequate counseling re: risks of

complications SET strongly recommended Discouraged/denied in women 50 and

over with underlying medical conditions & >55 regardless of health

ASRM Ethics Committee Report: Oocyte or embryo donation to women of advanced age Fertil Steril 2013; 100: 337-340.

How old is too old?

Ethical concerns for the donor conceived offspring Possibility that one or both parents could

die before the child reaches adulthood Stresses of parenting as an older parent Difficulties of meeting the emotional and

physical demands of parenting

ASRM Ethics Committee Report: Oocyte or embryo donation to women of advanced age Fertil Steril 2013; 100: 337-340.

Strategies

Ageism still an acceptable bias in 2014 Hypocritical given how many US grandparents

are primary care givers to young children today 3 mil (2011) Pew Research Center

Older parents often have more resources Age alone does not make one a good parent

Less parental stress reported by older moms ART children outperformed peers on

standardized test scores in a comparison study Older the mom the better the better they did

http://www.pewsocialtrends.org/2013/09/04/at-grandmothers-house-we-stay/Van Voorhis et al Hum Reprod 2010; 25: 2605. Paulson Fertil Steril 2007; 87: 1327- 1332

Fears about the donor

Fears about the donors

Who are they? Why do they do it? What are the

options? How are they

screened? What

characteristics should I consider?

Donors: Who are they?

21-31/32yo Motivation is a combination of altruism

and financial compensation Compensation amounts vary regionally They often know someone who’s

experienced infertility and want to help

Donors: Source options

Clinic recruited (Fresh) Couple is screened and matched by the

clinic staff Agency recruited (Fresh)

Couple selects donor to be screened Egg bank

Screened and stimulated

Source options: Clinic recruited

Advantages: Passed screening Donor is known to staff

Disadvantages: Couple is matched to the donor Identity release option not available May or may not see photos

Source options: Agency recruited Advantages:

Couple selects donor Can see photos May choose identity release

Disadvantages: May not pass screening process

Emotional let down Compensation may be higher Travel expenses additional cost

Source options: Egg Banks

Advantages: Convenient Affordable Timing is not an issue PR are comparable

Disadvantages: Fewer frozen embryos Inventory ebbs and flows Some still consider this experimental

Source options: Egg Banks

In 2013 ASRM Practice Committee published a paper entitled, Mature oocyte cryopreservation: a guideline Removed the “experimental” status

Impacted insurance coverage Made egg banks more accessible to

patients in states with mandated coverage for infertility

Fertil Steril 2013; 99: 37-43

Donors: How are they screened? ASRM Guidelines

FDA Genetic Ovarian Reserve General health Psychological

Fertil Steril 2013; 99: 47-62.

Donors: How are they screened? Psychological screening is as important

as physical screening MMPI/PAI Clinical interview

Ovarian reserve screening may be of particular importance to young recipients

Discuss the significance of blood type

Donors: Can I see a picture?

Policy varies from clinic to clinic Adult/childhood/

both Egg banks policies

may also vary Some recipients

find a picture comforting others a reminder of the donor

“She has to be young and pretty just like me”

Strategies

Reassure them: Donors are nice people In person forums very helpful

Give them a list of all the testing done Provide a genetics report Emphasize the thoroughness of the psych

evaluation Info re: ovarian reserve testing Significance of multiple measures D3, AFC,

AMH Discuss the significance of blood type

Concept of Multiple Parents

Whether the couple discloses the use of donor eggs to the outside world or not they know there is a third person involved

Genetic and biological relatedness not required to create a family

Framing the use of donor gametes in the context of society as a whole may be helpful Divorce Adoption

Concept of family is changing

Concept of Multiple Parents

Donor presence recedes over time but never really goes away

Focus changes over time from donor and recipient to the offspring Offspring are often the forgotten ones

Who is the real mother?

Strategies

There is one mother Introduce the concept of mDNA Empowering and restores a sense of control

Anonymity infers no identity Donor is real and will always be a part of

their lives She can be a helper or a threat

Prepare them for resemblance talk Innocent remarks can be a painful reminder

of the donor’s presence

Concerns About Bonding

http://www.nurture.co.za/wp-content/uploads/post-secret.jpg

Concerns About Bonding

“I fell in love with my son the moment I saw him for the first time on the ultrasound. I will never forget how it felt to see his tiny heartbeat flashing on the screen before we could even hear it.”

“I know that he is not genetically related to me. But he still is, and always will be, MY SON. I'm the one he snuggles next to when he's hungry and wants to nurse. I'm the one he cries for when he wakes up in the middle of the night and can't sleep. I'm the one he crawls to with a big smile on his face when I come home after a long day at work. He is MY SON and I am HIS MOTHER. I love him so much it makes my heart ache. I have never felt disconnected from him and I don't ever really think about the fact that we don't share DNA. “

http://anonymousus.org/stories

Concerns About Bonding

“I am pregnant with a donor baby and basically have butterflies in my stomach the whole time time. I don't feel like I am bonding with it al all. I wish it would miscarry and go away because it just doesn't feel right. The clinics don't go through this do they when they take your payment of $8,000 None of this is discussed. The whole thing just feels wrong to me. I did this for my husband. He so wants to be a dad. People do have a right to know where they come from. It's a natural human instinct to want to know. But it's also a natural human instinct to want to pass on your jeans and have children. But if this cannot happen for couples, then that should be it. IVF fine, but using other people's eggs and sperm is wrong and a step too far. I feel what we have done is wrong. My husband has no idea how I feel. I feel very alone and isolated with no to talk to. Everyone expects me to be happy but I am putting on a brave face. I have been off work for weeks with terrible morning sickness and just want this baby to go away so that we can live a clean life.”

http://anonymousus.org/stories

Strategies

Concerns are real and appropriate It is normal to have concerns Not everyone will embrace the DE option and

we shouldn’t talk them into it 23 chromosomes exert a lot of influence

Child will never have Dad’s ____ or Mom’s ____ Maternal DNA is also being passed to the

child during pregnancy Responsible for far reaching epigenetic

modifications

Is It Going to Work?

Investment of time money and emotions are worth it if…

Some are not prepared for negative outcomes no matter how much they’re counseled 40%-60% of embryos are euploid

Realistic expectations SART data 56.5% THBR

Strategies

Manage their expectations Give them SART Summary Report for your clinic Discuss inherent loss rate in pregnancy

regardless of age Review normal reproductive physiology and

rate of attrition from follicle eggembryobaby

Be honest there is a leap of faith required Increasing number of IRMS patients

choosing aCGH to maximize their chancesPatrizio P, Sakkas D. Fertil Steril 2009; 91:1061-1066.

Resources: Bibliography

Give them all the information they need to make an educated decision MHPG Bibliography

http://www.asrm.org/uploadedFiles/ASRM_Content/About_Us/Specialty_Societies/Professional_Groups/MHPG/MHPG_Childrens_Bibliography.pdf

Translated into many languages http://booksfordonoroffspring.blogspot.ca/

Selective reduction

Resources: Donor Selection

Health and family health hx most important

Blood type: disclosure decision impacts donor choice

Education often confused with intelligence

Open identity option? Influence of staff on donor choice

They trust you and your opinion matters

Braverman et al Fertil Steril 2011; 96: S10; Braverman et al Fertil Steril 2010; 94: S67.

Resources: Disclosure

Parents may be conflicted Fear the child will want to find the donor

Some make legitimate reasons for non-disclosure

Fear stigmatization if DE goes against cultural norms

Timing is important Research comparing DE, DI to adopted

and naturally conceived positiveGolombok et al Hum Reprod 2002; 17: 830-840

Case Study

Mary and John have opted to use a fresh donor from our program. They had looked at multiple profiles and asked for input from the DE team re: the best donor. They are not sure if they are going to disclose the use of donor egg to their children. It has taken Mary a few months to get comfortable with the idea of using donor eggs. She asked if she could talk with another recipient who has already cycled and seemed more at peace after doing so.

Give Them Time

Reproducing with someone else’s eggs is not the same as using one’s own

Waiting list can offer the gift of time when the couple is on the treatment treadmill and can’t get off

This is a process that requires assimilating a lot of information

Final Thoughts

Be aware of your personal feelings re: third party reproduction

Your opinions matter We communicate both verbally and non-

verbally and may be influencing patients My personal philosophy is to be as

unbiased as possible Give them the resources and let them

make the decision

Summary

DE is not a cure for infertility Patients often have many concerns and

obstacles transitioning to DE The nurse’s role is multi-dimensional and

significant There are many resources available to

patients to help them make informed choices

IRMS at St. Barnabas