Presentation on theme: "Now What Do I Tell Her? All The Things to Do to Use Donor Egg Maria M Jackson MA, RN."— Presentation transcript:
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 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
Unlike traditional mourning and grieving the child was never born…so how do you mourn and grieve a dream? DreamReality
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 2012 Donor Oocytes (all ages) Fresh EmbryosThawed Embryos Transfers9250 7608 LBR/ET56.637.2 Avg # embryos/ET 1.81.8 https://www.sartcorsonline.com
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
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 gametes Mahlstedt & 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 happen ed
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 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 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 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 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.pdfhttp://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/ 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 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 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