After their first round of in vitro fertilization (IVF) produced a single embryo and did not result in a pregnancy, Amanda Jensen and her husband decided to use a donor embryo. While this option was their best chance for achieving a pregnancy, that doesn't mean it was an easy decision.
"I started seeing [a psychologist] after we realized having kids that were not genetically ours was in our future," says Jensen, 28, from Des Moines, Iowa. "That was something I had to really work through given how much we'd just spent on our failed IVF attempt. I had hit rock bottom and wanted to get help."
At the Jensens' fertility clinic, patients with extra embryos can donate them anonymously to other clinic patients. The first donor embryo didn't implant, but the next one did. Last December, they had a baby boy.
"Infertility is stressful in many ways that I never anticipated," Jensen says.
Fertility counseling is no longer only about helping people come to terms with infertility or deal with the stress of fertility treatment. As Assisted Reproductive Technology (ART) advances, the psychological issues surrounding it proliferate. That means guidance from a counselor or psychologist during treatment is increasingly vital.
Here are some of the questions you might encounter when getting fertility treatments: How do you feel about using a sperm, egg, or embryo donor or surrogate? Should the donor be a friend or a stranger? Should you choose the sex of your child? Should you screen your embryos for abnormalities? Should you reduce a high-order multiple pregnancy? What will become of any leftover embryos: Will you pay an annual storage fee, donate them to another couple or to research, or have them destroyed? How do you feel about freezing your eggs for future use? Will your religious beliefs affect these decisions? How will you feel about these decisions five years from now?
Until we were able to take reproduction (temporarily) outside of the body, none of these choices existed. Fertility doctors and patients alike may focus on achieving pregnancy and birth by any means available, without considering the potential social or psychological ramifications of various treatment options.
"Decisions that may be a routine part of treatment can be ethically and morally troubling for many people," says Sharon Covington, psychological support services director at Shady Grove Fertility Clinic. "Different issues and nuances come up in regards to choices." For instance, "we have to prepare people for how they'll talk to their children about their origins, or how they feel about having a child that is not biologically theirs."
Doug, 35, and Andrea, 32, of Lawrenceville, New Jersey, started trying to get pregnant back in 2012. After three miscarriages and surgery to remove uterine scarring, the couple turned to IVF. The only embryo that tested chromosomally normal was implanted, but that pregnancy also ended in miscarriage. Doctors weren't sure if Andrea's uterus would ever be able to maintain a pregnancy.
During the procedure to remove the miscarried fetal tissue, Andrea hemorrhaged and required a blood transfusion. The couple decided it was too dangerous to attempt pregnancy again.
"At first, we saw our psychologist because we needed support to make it through a particularly stressful time," Andrea says. "After that, when the news kept getting worse and worse, and we were facing more difficult decisions, it was helpful to have a safe place to talk things over. We were experiencing this long-term trauma over months that turned into years."
A friend expressed interest in being Andrea and Doug's gestational carrier, so they underwent two more IVF retrievals, resulting in four healthy embryos. After passing medical and psychological evaluations and spending months finalizing the legal contract, the friend backed out of the agreement. Andrea and Doug are currently working with a surrogacy agency to identify a new gestational carrier.
They stress how helpful it was to their relationship that both of them sought therapy—sometimes together, sometimes alone. Andrea says counseling helped them "address what we would do if there is never a baby."
The American Society of Reproductive Medicine recommends that all participants in third-party reproduction (the use of donors or surrogates) receive counseling before undergoing treatment. Covington explains that in these arrangements, as many as five people may come together—intended parents, sperm donor, egg donor, and surrogate—generating "a complex psychosocial minefield to maneuver during the counseling process."
The medical director of the Center for Human Reproduction, Norbert Gleicher, tells the story of the patient who shaped his fertility clinic's approach to using donated eggs. After being told she would not be able to get pregnant with her own eggs, the patient followed the doctor's advice to use donor eggs, despite her Jewish Orthodox religion considering it controversial. She gave birth, but ended up rejecting the child. She believed that if she had only tried harder to get pregnant with her own eggs, God would have given her a baby. She eventually required a psychiatric intervention.
"This case emphasized the importance of not taking patients into egg donation cycles if they are not psychologically ready," Gleicher says. "My colleagues think they are doing the right thing by giving patients the best chance of getting pregnant by suggesting the use of donor eggs right away, but it has to be the patient's choice."
Some research points to fertility treatment increasing the risk of postpartum depression. Additionally, a small study found that after fertility treatment, one in ten women experienced delayed-onset or chronic stress that "predicted serious mental health impairment 11–17 years after treatment." The authors say this illustrates the importance of profiling patients at the start of fertility treatment to identify those at risk, and tailoring support to promote healthy adjustment during and after treatment.
Some IVF programs require a mental health consultation as part of the orientation process, but there remains no consistent philosophy regarding such screenings. Even if fertility doctors are sensitive to their patients' ethical concerns or psychological needs when outlining treatment options, most appointments tend to be too short to really dig into these topics.
"As with many things in health, mental health is considered almost as an afterthought," said Ariel Shumaker-Hammond, a therapist at Porch Light Counseling in Asheville, North Carolina, who specializes in the reproductive, pregnancy, and postpartum experience.
"ART is a relatively new field that is changing dramatically every year. Reproductive endocrinologists are really just starting to realize the huge psychological impact of infertility, and recognizing the benefit of including mental health in treatment," Shumaker-Hammond says.
In terms of helping guide patients' decision-making, what do counselors provide that fertility doctors don't? Shumaker-Hammond says it's not her job to make decisions for patients or present them with statistics or likely outcomes. "For me, it's about helping clients process the emotional implications of going through ART, explore various sides of each decision and how they will be impacted, and adjust to the outcome, whether positive or negative."
Between 2010 and 2012, Jen Smith of Baltimore, Maryland, underwent five full IVF cycles plus three frozen embryo transfers. Smith, now 40, says her doctors didn't offer much in the way of emotional support. "The medical teams didn't do us any favors by remaining purely clinical with their advice," she says. Smith was seeing a family therapist, but says "she wasn't equipped to handle my particular set of challenges."
When she and her husband realized that "conceiving, carrying, and birthing our way into parenthood was probably not going to happen," Smith connected with a therapist who specialized in infertility via their local chapter of RESOLVE, a national infertility nonprofit.
"The guidance she provided was huge," Smith says. "She helped by setting me down a path to make my own decisions about treatment, and when to call it quits. Coming to terms with the fact that I'd never become pregnant or carry my child … that was life-altering." Smith believes therapy is "immensely helpful" for anyone "facing the many uneasy, hard, agonizing decisions that come with treating infertility." In December 2014, the Smiths adopted a son.
After learning she was lacking in estrogen, Annie Warshaw, 28, endured two years of fertility treatments before finally becoming pregnant on her fifth embryo transfer procedure. In total, Warshaw had approximately 72 eggs retrieved.
Like Smith, Warshaw was already seeing a therapist when she began fertility treatment, but switched after the first retrieval failed to produce any eggs. Her new therapist specialized in medical trauma and had undergone IVF herself. She helped Warshaw identify questions to ask her doctor, leading her to better understand her options while managing her stress and anxiety.
"Infertility is not easy. It is mentally and physically draining. It is lonely, long and difficult," Warshaw says. "Having a professional to help throughout the process is critical to surviving."
Many fertility patients may not be getting the mental health treatment they need. A survey of patients at five California fertility clinics published in the July 2016 issue of Fertility and Sterility shows that few were offered counseling. Despite more than half of the women and one-third of men displaying clinical-level depression symptoms and 76 percent of women and 61 percent of men displaying anxiety symptoms, only one-quarter of patients said their clinic offered them information on mental health resources.
Shumaker-Hammond says most fertility clinics don't offer in-house counseling services, but do maintain a list of therapists to refer patients to. "There are some clinics that consider this a priority and have therapists in the clinic; I just don't think it's the norm," said Shumaker-Hammond. "I do think—and hope—that this is changing."
Finding time for therapy is one barrier to receiving care, and so is covering the cost.
"ART is already so expensive because most insurances do not cover it," Shumaker-Hammond says. So, if their insurance also doesn't cover mental health treatment, or even if it does and the copay or deductible is high, then it's yet another cost that feels frustrating and unfair—for good reason."
Other barriers include stigma, lack of understanding about how much fertility treatment can affect mental health, and a misunderstanding of how many aspects of treatment therapy can help with. Shumaker-Hammond says often, "clients don't know to seek help," or believe "seeking help makes them 'weak'."
She says one of the best ways to really start lowering these barriers is for more insurance plans to cover ART and "for reproductive endocrinologists to recognize how big of an impact infertility has on mental health and encourage patients to seek help."
Whether a patient's decision-making difficulties are of a moral, ethical, or religious nature, mental health professionals can help patients work through them. Given the stressful nature of the procedures and the ever-growing complexities of treatment options and their ramifications, it's vital that fertility patients be given access to mental health resources.
Because in the end, Covington believes that while "technology changes, feelings don't."