Transcript Now What Do I Tell Her?

Now What Do I Tell Her?
All The Things to Do to Use Donor
Egg
Maria M Jackson MA, RN
Learning Objectives
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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?
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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
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Failed cycles
Miscarriages
Steps in the Process
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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 and
discussed 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
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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
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Common emotional responses to infertility
Depression
 Anger
 Guilt
 Confusion
 Loss of control
 Questioning the meaning of your relationship
 Failure
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Normalize Their Feelings
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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 2012
Donor Oocytes (all ages)
Fresh Embryos
Transfers
LBR/ET
Avg # embryos/ET
https://www.sartcorsonline.com
Thawed Embryos
9250
56.6
1.8
7608
37.2
1.8
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
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Mary
 Role
failure
 Pregnancy
 Impacts
is played out in a woman’s body
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
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John
 Distancing
more often used by men to cope
 Not
comfortable exposing themselves emotionally
 May work longer hours
 May consume more alcohol
 Self-control
 He
 His
and problem solving typical
wants to fix this for his partner
coping style does not mean he’s less invested
Identify Obstacles
Common Obstacles
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Unresolved issues surrounding the couple’s infertility
Societal attitudes
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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
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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
gametes
Mahlstedt & Greenfeld Fertil Steril 1989; 52: 908-914
Strategies
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Mandatory pyscho-educational meeting with MHP
before they can cycle
 They
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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
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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?
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“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?
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Concerns for the mother’s health
 Careful
screening required
 Adequate counseling re: risks of complications
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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?
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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
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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
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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?
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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
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Clinic recruited (Fresh)
 Couple
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Agency recruited (Fresh)
 Couple
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is screened and matched by the clinic staff
selects donor to be screened
Egg bank
 Screened
and stimulated
Source options: Clinic recruited
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Advantages:
 Passed
screening
 Donor is known to staff
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Disadvantages:
 Couple
is matched to the donor
 Identity release option not available
 May or may not see photos
Source options: Agency recruited
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Advantages:
Couple selects donor
 Can see photos
 May choose identity release
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Disadvantages:
 May
not pass screening process
 Emotional
let down
 Compensation
may be higher
 Travel expenses additional cost
Source options: Egg Banks
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Advantages:
 Convenient
 Affordable
 Timing
is not an issue
 PR are comparable
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Disadvantages:
 Fewer
frozen embryos
 Inventory ebbs and flows
 Some still consider this experimental
Source options: Egg Banks
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In 2013 ASRM Practice Committee published a
paper entitled, Mature oocyte cryopreservation: a
guideline
 Removed
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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?
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ASRM Guidelines
FDA
 Genetic
 Ovarian Reserve
 General health
 Psychological
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Fertil Steril 2013; 99: 47-62.
Donors: How are they screened?
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Psychological screening is as important as physical
screening
 MMPI/PAI
 Clinical
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interview
Ovarian reserve screening may be of particular
importance to young recipients
Discuss the significance of blood type
Donors: Can I see a picture?
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Policy varies from clinic
to clinic
 Adult/childhood/both
 Egg
banks policies
may also vary
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Some recipients find a
picture comforting
others a reminder of
the donor
“She has to be young and pretty just like
me”
Strategies
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Reassure them: Donors are nice people
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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
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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
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Donor presence recedes over time but never really
goes away
Focus changes over time from donor and recipient
to the offspring
 Offspring
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are often the forgotten ones
Who is the real mother?
Strategies
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There is one mother
 Introduce
the concept of mDNA
 Empowering and restores a sense of control
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Anonymity infers no identity
 Donor
is real and will always be a part of their lives
 She can be a helper or a threat
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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
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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
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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?
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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%
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of embryos are euploid
Realistic expectations
 SART
data 56.5% THBR
Strategies
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Manage their expectations
 Give
them SART Summary Report for your clinic
 Discuss inherent loss rate in pregnancy regardless of
age
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Review normal reproductive physiology and rate of
attrition from follicle eggembryobaby
Be honest there is a leap of faith required
Increasing number of IRMS patients choosing aCGH
to maximize their chances
Patrizio P, Sakkas D. Fertil Steril 2009; 91:1061-1066.
Resources: Bibliography
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Give them all the information they need to make an
educated decision
 MHPG
Bibliographyhttp://www.asrm.org/uploadedFiles/ASR
M_Content/About_Us/Specialty_Societies/Professional
_Groups/MHPG/MHPG_Childrens_Bibliography.pdf
 Translated into many languages
 http://booksfordonoroffspring.blogspot.ca/
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Selective reduction
Resources: Donor Selection
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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
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Parents may be conflicted
 Fear
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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 positive
Golombok 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
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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
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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
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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