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

1. Now What Do I Tell Her?All The Things to Do to Use Donor Egg Maria M Jackson MA, RN

2. 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

3. 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

4. Steps in the Process • Acknowledge their emotions • Normalize their feelings • Identify their concerns/ obstacles • Give them resources • Give them time

5. 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 otheroptions including adoption and living childfree. So how do you begin the conversation???

6. 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

7. 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

8. Unlike traditional mourning and grieving the child was never born…so how do you mourn and grieve a dream? Dream Reality

9. 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.

10. Acknowledge the emotions • Common emotional responses to infertility • Depression • Anger • Guilt • Confusion • Loss of control • Questioning the meaning of your relationship • Failure

11. 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

12. Lot’s of folks are using the donor egg option SART Clinic Summary Report 2012 Donor Oocytes (all ages) Fresh Embryos Thawed Embryos Transfers 9250 7608 LBR/ET 56.6 37.2 Avg # embryos/ET 1.8 1.8 https://www.sartcorsonline.com

13. Gender differences

14. 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.

15. 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

16. 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

17. Identify Obstacles

18. 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????

19. 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

20. 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/

21. 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

22. 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

23. 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

24. Is this the new normal? New technologies and cultural shifts have created a booming cohort of wrinkled moms and dads with newborn babies. So why do older parents make so many people uneasy? By Lisa Miller

25. 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. “

26. 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.

27. 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.

28. 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

29. Fears about the donor

30. 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?

31. 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

32. 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

33. 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

34. 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

35. 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

36. 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

37. Donors: How are they screened? • ASRM Guidelines • FDA • Genetic • Ovarian Reserve • General health • Psychological FertilSteril 2013; 99: 47-62.

38. 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

39. 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”

40. 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

41. 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

42. Concept of family is changing

43. 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?

44. 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

45. Concerns About Bonding http://www.nurture.co.za/wp-content/uploads/post-secret.jpg

46. 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

47. 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

48. 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

49. 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

50. 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.