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A Holistic View Of Fertility Care and Perinatal Loss

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Join Dr. Loree Johnson, Ph.D, LMFT, Katheryn Gardner, LCPC, PMH-C, and Dusty Williams, LMHC as they discuss different methods of care when working with clients who are dealing with infertility and/or perinatal loss. 

Facilitated by Dr. Katayune Kaeni, each expert offers a unique approach to this topic. They dive into what you should be aware of when a client is going through infertility or pregnancy loss, how to help women who aren’t having luck with IUI or IVF, and ways you can support a population that has limited resources to care when dealing with infertility and/or perinatal loss.

In addition, this webinar will help advise you if you’re interested in working with families or mothers dealing with infertility and/or perinatal loss. This group of experts has the insight and knowledge on what to expect when you get started, and how to offer a holistic approach when offering care. 

  1. Introductions
  2. What areas of life do clinicians need to be aware of or sensitive of that affect the patient going through infertility or pregnancy loss?
  3. Are there specific ways infertility and perinatal loss are affected by race?
  4. How do you best support or assist the population that has limited resources, but are suffering from perinatal loss or infertility?
  5. What are top considerations and issues related to couples therapy when a couple faces fertility challenges?
  6. How do you work with women experiencing fertility issues when the partner is unsupportive or uninvolved? 
  7. How are each of you adapting and modifying your current practice due to the recent limitations of COVID-19?
  8. What specific trainings do you recommend to help clients struggling with infertility?
  9. What specific trainings do you recommend to help clients struggling with perinatal loss?
  10. What are the unique experiences that patients go through when currently undergoing medical treatments?
  11. How do I help women frustrated that IUI and IVF isn’t working, but who aren’t ready to lose their dream of conceiving a child?
  12. How do you continue to practice and counsel others when you, the clinician, are going through fertility issues or miscarriages?
  13. Can you give a tip or a pointer for anyone out there who wants to do this work?

1. Introductions

Dr. Katayune Kaeni: Welcome, everybody. Thank you so much for joining us on this webinar. We are really happy to have you here. These topics are very important, and I know some of you who are joining us know a little bit about these topics and for some of you, this is brand new information. So, we’re hoping to give you a really good, brief and informative overview of these really, really important issues in mental health.

So, yeah, it looks like there’s going to be quite a few people with us today. I am Dr. Kat. I am a psychologist and perinatal mental health certified clinician, a psychologist in the Claremont area. And I will be your host for today and jumping in occasionally with these experts to give you guys the information you’re here for. And I’ll have everyone else introduce themselves. And before we get going, we’ll give you some basic definitions for infertility and perinatal loss, so that we can all be kind of working from the same definitions. All right. Thank you for being with us. Dr. Johnson.

Dr. Loree Johnson: Hi, there. I’m Dr. Loree Johnson. I’m a licensed marriage and family therapist in Hermosa Beach. I specialize in women’s mental health and reproductive health. And I like to help women overcome and heal from infertility, trauma and grief. That really impacts their fertility journeys. I do a little bit of couples work as well, because we all know that infertility isn’t just something that happens to someone individually, it happens to the relationship. So, I do like to tend to that as well.

So, I’m really happy to be here amongst my colleagues and talking with you all a little bit about something that’s really important. And especially with today being Pregnancy and Infant Loss Remembrance Day, and a really special day in the community and the infertility community, it’s really nice to be here. Thank you.

Kathryn Gardner: Hi, there. I am Kathryn Gardner, I’m a licensed clinical professional counselor, a certified perinatal mental health specialist, and a certified health coach for pregnancy. Okay. So, what all those titles mean is that this is my passion. This is what I have done my education and my training in for over 15 years, I have a private practice in the Chicago area, and I have been running a support group in the local area at our hospital for perinatal loss, meeting with women through miscarriage, stillbirth, and infant loss.

So, when you hear the title perinatal loss today, that is the umbrella that covers all three of those areas of loss. My focus in my private practice is to help women coping before, during and after pregnancy. I felt like I was able to reach a lot of moms, and women, and couples in our area, but I wanted to do more. So this last May, in the midst of everybody going online, I started a YouTube channel to really increase the audience that can receive this kind of helpful information, tips and tools, techniques, and just education about what they’re going through, through pregnancy, postpartum and motherhood struggles. So, thank you for having me today.

Dusty Williams: Hi, there. Thank you so much for having me as well. I’m so excited to discuss this incredibly important topic that obviously we’re very passionate about. I’m a psychotherapist in private practice in Jacksonville, Florida. I see adolescents and adults with many different goals, but I really narrowed in on the niche of infertility, reproductive trauma and perinatal loss about 13, 14 years ago when I founded the Infertility Counseling Center of Jacksonville now named Thrive Infertility Counseling.

This is where I specialize in supporting those who struggle with the crisis of infertility, pregnancy loss, reproductive trauma, as well as alternative paths to parenting. I also support the LGBTQ community, who are undergoing fertility treatment and hopes to becoming parents as well. I also provide psychological services to reproductive endocrinology clinics and fertility agencies serving as a consultant and conducting evaluations for those undergoing third-party reproductive procedures and treatments, such as egg donation, sperm donation, embryo donation and the surrogacy process.

I’m a very active member of the American Society of Reproductive Medicine’s Mental Health Group. It’s a very vibrant and dynamic group within that medical society. And I’m also trained in Alice Domar’s Health Psychology, Mind, Body Behavioral Program for Infertility. So, that’s what I do most days and absolutely love it. It is some of the most rewarding work that I could have ever imagined getting into, supporting this much, much needed population, that’s often silently suffering. So, thanks again for having me.

Dr. Katayune Kaeni: Absolutely. Thank you to all of our experts for introducing yourself. As you guys will be able to hear, who are listening to us today, we are all extremely passionate about this work, and have our hands not only in supporting people individually and through psychotherapy, but belonging to many organizations and heading very important missions within those.

So, yeah. Great. So, we’ll move on to our questions and get through as many of them as we can today. All right. Question number one. What areas of life do clinicians need to be aware of or sensitive of that affect the patient going through infertility or pregnancy loss? Dr. Johnson, let’s start with you.

2. What areas of life do clinicians need to be aware of or sensitive of that affect the patient going through infertility or pregnancy loss?

Dr. Loree Johnson: Absolutely. So, infertility is all-encompassing for the individuals or couple that are going through this process. So, when you think about mental health, we think about higher instances of anxiety and depression that go along with, just that correlate with the length that they are in treatment. We know that the more treatment or the longer the treatments are extended to, those rates are higher.

We’re dealing with feelings of isolation, issues with how women and men, depending on if they’re male factors or female factors that are contributing to the fertility issues, affect their sense of self. We know that infertility can affect people’s relationships, not just with self, but with their partner, relationships with families and friends, their family members and friends, and then also their career.

The other thing that I see in the infertility community is a lot of grief, because of there’s a loss around not being able to formulate the family the way that we had intended or might’ve expected. So, there’s a mourning process that usually goes along with, I think, people in this community. Then, also with our loved ones, not necessarily knowing how to respond when they see someone struggling with infertility, that’s in distress.

So, it’s really an all-encompassing, I think, issue to struggle with and I think one that really requires a holistic approach. So, those are just some areas that I would like to touch on and I’ll leave my colleagues to talk about some of the others.

Dr. Katayune Kaeni: Sure. Just as a framework is I forgot to mention earlier, in terms of definition for infertility that is typically looked at as the inability for a couple to conceive after trying without reproductive support or birth control of any kind for about a year. So, when we’re talking about infertility, that is generally meaning inability to conceive within a year. For some populations and ages, that can be a little bit less than a year.

Then also definition for perinatal loss, it covers quite a timeframe, and that can be a miscarriage at any weeks in pregnancy for multiple reasons, as we may hear today, there’s a lot of reason for miscarriage to happen. Miscarriages up to 20 weeks gestation, stillbirth is considered 20 weeks and on, and neonatal loss is after birth up to about 28 days. So, when we’re talking about loss and infertility, those are the timeframes that we’re discussing, and obviously how that’s impacting mental health. So, sorry, I forgot to add that in earlier. So, Kathryn, we’ll go to you, if you can answer this question.

Kathryn Gardner: Great. I felt like this was a great place for us to start. So I’m glad that Laurie wrote it in for the program. When you look at the areas, I really visualize it like a web. And for many of the clinicians watching today, and to our viewers, they may be seeing populations that they’re unsure of how this topic may touch them. But I, myself, and many of my colleagues have been surprised by how many areas have been impacted. You could be a counselor for children, for adolescents and seeing a lot of family discord. Well, when you dig and get a little background on the family, you may find out that the parents are suffering through a pregnancy loss and grief is part of this household.

You may be a couples counselor, and the couples counselor is recognizing that there’s old history of pain, years of conflict between communication and intimacy that have stayed with them for long-term damage in the marriage.

So, many of our viewers are going to see that there is anyone in the childbearing years, maybe experiencing some of the areas that infertility and perinatal loss touch. Everything from self-esteem and how she views herself, how the partners view each other, they may differ as to how they handle grief, we’ll talk about that in some of the upcoming questions, their difference in that may be a battle for them. It may be that extended family are not understanding the modern world of fertility. There may be spiritual, religious challenges, family members judging, or commenting. “Well, that’s not what we did in our day.” And coming up with ways to communicate and coming to the counseling process, to be able to learn tools, to handle the communication with friends who are becoming pregnant, how to navigate social media when announcements and baby showers are all over social media. So, the web effect of how these losses, this type of trauma and grief is very large.

Dr. Katayune Kaeni: Great. Thank you, Kathryn. And Dusty, please give us your perspective.

Dusty Williams: Sure. Thank you. So, just to add to something that hasn’t yet been mentioned by my colleagues here is even just the web includes this piece of spirituality for a lot of people. It can play a big factor in either support, but oftentimes distress. Clinicians working with individuals and couples who are struggling with infertility and pregnancy loss, they should determine if there’s any spiritual or religious beliefs influencing the client’s decisions regarding medical intervention.

I often find that even if they themselves are not practicing a certain kind of religion or a dedicated spiritual practice themselves, they came from a family of origin, that might have some strong opinions sometimes about that path, which then can cause conflict. It’s important for us to assess, does the client experience their religious teaching or spiritual practices and community support as helping to bear something that feels unbearable or as a source of judgment, a set of limitations, or a mix of both?

Yeah, I think it’s oftentimes even within couples, there can be some conflicts when it comes to these spiritual beliefs that need to be taken a look at. It often creates a spiritual crisis of some sort. Like the dark night of the soul, God has abandoned me. How does this fit into belief of karma? Justice? And how unfair it feels feeling like they’re being punished?

So, even at some of these deeper, deeper levels, things that they may have not felt or thought about in years from their family of origin, can also rise up. So, that was one thing that hadn’t been mentioned yet as a big area that I see as well not to mention the major financial strain that then affects everything else involved.

Also, I think, to sum up that the social, familial piece is just, it’s almost an existential identity crisis that many women go through, where do I belong in my peer group? At a certain age, women and the social milieu around women can often be dominated by talks of motherhood. And it can make people feel very, very left out. So, I think that that’s another big piece as well.

Dr. Katayune Kaeni: Yeah, absolutely. Thank you for all of that. Only one other thought that I had to add is that what is unique about infertility and pregnancy loss is that what the person who’s pregnant or trying to become pregnant is dealing with is that this is all happening within their body. That makes it feel extremely personal and it can often… It can come with a lot of self blame, and judgment, and negotiations with themselves. “Well, if I hadn’t done this, then it would have happened.” It can become really embroiled in their sense of self and their trust in their bodies.

So, these two topics, infertility and pregnancy loss, we could talk about each one of these for hours separately. So we’re just giving you some really, really good, important bits for now. So thank you to our experts for that question. And we’ll move along to question number two. Are there specific ways infertility and perinatal loss are affected by race? For example, less access to care for women of color? Dr. Johnson.

3. Are there specific ways infertility and perinatal loss are affected by race?

Dr. Loree Johnson: So, I do think that there are ways that infertility and perinatal loss are affected differently by race. I will say this, that approximately, at least one in four individuals will suffer from a pregnancy loss. And one in eight couples generally will struggle with infertility. What we know is that there are racial and cultural disparities in terms of just the prevalence of infertility, and also loss as well.

Research actually states that black women are twice as likely to experience issues with infertility than our white counterparts. That is actually some new data that hasn’t really, and I think that we’re still learning from, because some of the ideas that I think were present in some of the communities really suggested that fertility issues didn’t impact the black community as such.

And we don’t have this clear data with some of the other cultural groups as yet, but there’s just this veil of secrecy, I think, that encompasses talking about infertility. It’s not something that a lot of cultures talk about and not just talking about women of color, meaning black women, but within the Latinx culture, or Asian culture, or Hispanic culture, or Asian, it’s just, there’s just differences in terms of how it’s perceived.

Then when we get into infant loss as well, we still see there are some disparities in terms of just what’s happening with black children being, transitioning too soon versus what’s happening to white kids or Hispanics and Asian babies. So the data is really letting us know that there are some disparities. And I think we’re still trying to figure out and clarify what’s contributing to that. But access to care is just one element, but I think there are other factors too, that we’re still examining.

Dr. Katayune Kaeni: Sure. Yeah. And I’ll add a little bit to that as well that some of what we’re starting to understand is how racism, and systemic racism, and implicit bias, really do affect the care of women of color, people of color in general, but very specifically in the perinatal period of time. So, for instance, women of color not being believed about their pain or what they’re experiencing in their pregnancy. Old ideas about, well, they’re just complaining or they’re strong and they can figure it out and stuff like that.

So, there are some interpersonal things that really do impact that from care providers sometimes, but also systemically and just things that are in the water, so to speak, about how things have been done for years while the science is still trying to bear that out in terms of numbers, you can ask someone individually and they’ll tell you that that’s the case for them sometimes.

Along with all of the news around higher infant mortality rates and higher maternal mortality rates, people of color going into pregnancy and birth, knowing that those statistics are higher, sometimes also brings on obviously the stress, and that’s really what it comes down to is higher levels of stress because of many of these factors. Plus a lot of stuff we haven’t figured out yet. Yeah. Okay. Thank you, Dr. Johnson, question three. How do you best support or assist the population that has limited resources, but are suffering from perinatal loss or infertility? 

4. How do you best support or assist the population that has limited resources, but are suffering from perinatal loss or infertility?

Dusty Williams: Sure. Yeah. I think it’s really, really important to understand that the financial strain involved and just even having access to so many of these treatments is real. I mean, tens of thousands of dollars is often spent trying to achieve pregnancy. Oftentimes, there is a lack of access to coverage through insurance. A lot of employers do not provide any type of fertility coverage for medications, procedures. So, personally, for my practice, I always dedicate a certain amount of slots to doing some pro bono work or a sliding scale fee when I’m able to, that’s definitely a priority, in order to see people who do not have any kind of coverage, for not only their fertility treatments, so the paying out of pocket and already very short on extra cash for the kind of self-care that they desperately need with counseling.

But since I am, I do not take insurance or all insurances, then that can be very helpful to people. So personally, that’s what I’m doing. But it is, it’s a major problem. I’ve run many support groups in the past for free. There’s several out there through RESOLVE and other organizations that can be very helpful as well. Low cost groups that might be just a few dollars a session to be able to get in the door, get some support, get some skill building and tools can also be wonderful. Today, I think we also have access to some online platforms of support through doing things like webinars and workshops, and then just online forums for support that are helpful as well.

Kathryn Gardner: I agree with what Dusty is saying. I think sometimes it can be frustrating for women and couples that they have to find that they have to dig to try to find supports for them. But one of the pros and cons of 2020 and so many things going virtual, it has broadened the ability to be serviced in, maybe if it’s not in your town or your area, you can go outside of your area, perhaps even out of your state.

For resources, for low-income or low-socioeconomic families, we do want to recommend starting at their local hospital. For perinatal loss, starting at the pastoral care website for that hospital, you’ll see a listing of what type of bereavement services are offered, any memorial services that are held now in the month of October for Pregnancy and Infant Loss Awareness Month, the hospital may also then be able to direct you to any, yeah, sliding scale, low-cost therapists and counselors in the area, social work agencies that offer those services as well.

I’ll encourage women to look through organizations like grief.com, David Kessler’s website. He has a wonderful directory of a sliding scale and free services. Now, in COVID, he also offers, at grief.com, virtual support groups as well. So, to go on and pick the subject matter that would fit the participants.

Returntozerohope.org is Kiley Hanish’s organization. I’m going to talk about her more and her experience, her personal experience with stillbirth. Then she moved forward to want to not just educate and train clinicians on this topic, but also open up as many retreats and services. And she offers free and low-cost support groups as well on her website. So, supports can be received there.

Then, certainly there are books and information that could be found at the local library to feel educated on the topic. I find that that helps a lot of women and couples to be able to understand what happen? What are the things to ask their medical team sometimes even months after the loss? What happen? Can you explain it more to me? I’ve been doing some reading, I got educated on it and I want to hear a little bit more about what happen? So, the library, as well as many podcasts and YouTube channels that are geared specifically for education and wellness information for couples after perinatal loss.

Dr. Loree Johnson: I love the resources that have been mentioned so far, and I would also offer, RESOLVE is also a really nice resource for people struggling with infertility. And that might be another starting point. The IVF Warrior is another website that could be helpful to understand and gain more support about the IVF process and for people, individuals and couples to feel connected to the infertility community. But community is key. Like Kathryn said, with everything going virtual, it’s really increased our access to support in ways that we never imagined. So, it’s nice to see a lot of these online… These platforms that are really allowing us to reach people who are suffering in silence when before we didn’t have that option in this way. Yeah.

Dr. Katayune Kaeni: Right. Thank you, everybody. Question four, what are top considerations and issues related to couples therapy when a couple faces fertility challenges? Dusty, would you like to start?

5. What are top considerations and issues related to couples therapy when a couple faces fertility challenges?

Dusty Williams: I’d be happy to. I would say that the sexual relationship is typically greatly affected. So, doing a lot of sex therapies typically needed in order to get these couples reconnected. Also, able to keep trying even naturally at home in-between treatment cycles and things like that, infertility often affects males in a way where they can struggle with erectile dysfunction, because of the pressure involved in this non-spontaneous, timed intercourse where it is performed literally within this 30-minute period of time at home. And it is daunting for many to have that, the pleasure, the fun, the spontaneity taken out of it, and to feel like it all rests on them. So, I think that we do a lot of work around that.

Endometriosis is a common fertility diagnosis that causes very painful intercourse, which that alone makes it more difficult to become pregnant if you’re avoiding intercourse due to pain, not to mention the other implications of endometriosis.

So, we do a lot of work around pain management, through psychotherapy and methods of mindfulness. So, sex therapy and advanced training in that, if you’re working with infertile couples or couples going through treatment, is essential in my opinion. Communication skill building in the partnership is also very important, good old-fashioned active listening and empathy skill building, which many people are not very proficient at. So, they need some coaching around that in order to get on the same page.

The two biggest reasons couples fight is finances and intimacy. And infertility has a really big way that it affects both those areas of a couple’s lives. So, lots to work on there. I personally find EFT, Emotionally Focused Therapy, to be a very effective model in identifying the couple’s relational patterns, their conflict dances, that are going to get put on play here in a big way during fertility struggles.

We do a lot of grief work together as well. Couples cope differently oftentimes, whether it’s a same-sex marriage or a relationship, or a female-male relationship, most people cope differently with stress with loss. When they can’t learn how to come together, communicate through that, give each other what they need, create boundaries, that can cause a lot of [inaudible 00:27:19]. So we also do a lot of grief work together in regards to that.

Dr. Katayune Kaeni: Great. Thank you very much. All right, we’ll move on for time to question five. How do you work with women experiencing fertility issues when the partner is unsupportive or uninvolved? 

6. How do you work with women experiencing fertility issues when the partner is unsupportive or uninvolved? 

Kathryn Gardner: This is a tough one. And I do, I always am sharing with the female that has come into counseling, how courageous she is, because she knew something was lacking and she wasn’t getting the support that she was needing, and she was hoping that perhaps professional health and having a better script, having better tools to bring to their relationship, to bring home and discuss that will help.

It is an unsupportive partner, male or female, could be fear of being judged right in the most intimate and delicate relationship that you’re in. So, it is helping the partner that is seeking out the counseling to be validated for what they feel and how difficult this is. They may feel isolated from their friendships and from others who are successful in becoming pregnant. So, now it really can be a source of deep pain that their partner, who they’re in this with, for various reasons and in various ways, it feels like they are not supported.

I go through various types of ways to encourage them to work as a team. That may be encouraging the partner to go with to the doctor’s appointments. Some partners say, “Well, maybe it’s me. Maybe it’s how I’m explaining it. But maybe if my clinician explained it to my partner, there will be deeper understanding and better acceptance of what’s going on.”

Also, we’re trying to help these couples to look at, well, then what are other support ways that you can involve your partner? Is it that they’ll read some of the books with you or watch some of the videos to just become more educated, and join in, and feeling like this is a team effort that we’re alongside each other and can bring back that emotional intimacy that’s needed.

Dr. Loree Johnson: So, I think what they’ve said so far has been great. I think the other part too is just really empowering the partner who is coming to therapy, much like it’s been said already, and honoring what she has control over. And just focusing on what the medical plan is, what makes sense for her emotionally in terms of just feeling like she’s getting the support that she needs. I really want to honor that what she’s doing is hard. Maybe that her partner’s reaction and trying to understand her partner’s reaction as her partner’s reaction and not really a reflection of her, I think is another part in therapy that’s important.

Sometimes that creates space in the relationship and for her, or whoever is coming, excuse me, I think, to treat this person who’s being unsupportive maybe a little bit differently, and to see that person differently. Sometimes just that reframing, I think, can be helpful.

Dusty Williams: Everything that they’ve already said, but a couple of things that I would add is, in my experience, many partners who might be labeled as unsupportive or uninvolved are just uninformed and they don’t have the tools to really support in the way that they want. When I can finally get a lot of husbands in the room, they will feel, they will report feeling like they’re failing. And that they’re also, excuse me, highly uncomfortable, excuse me with the sun coming in. Okay. Highly uncomfortable in seeing their partner’s pain. They don’t feel like they have the skills to hold space and provide what she needs in that moment.

So, they avoid, or they deflect, or they hide, or they try to fix it. We’ve all heard time and time again… I’m going to shut these blinds here, one second. There we go.

So, I think it’s really helpful to frame up for the guys that all it is, is skill building, that he has the power to support her, it just takes a little bit of coaching and learning. I use some sports analogies to be Frank, to say, “Listen, do you love to play golf? Do you love… Did you grow up playing a sport? Of course, you always need a coach.” And that fits for a lot of males. Or try to appeal to them in their career. They’re working hard. They’re getting certifications. They’re going through school. They are going through trainings to keep getting stronger and better within their professions. And in order to have a great marriage and be able to walk through really hard crises, like infertility and reoccurring pregnancy loss, we often need a coach to help us take a look at what we might be doing by default and give us some tips and tricks and skills to be more effective in supporting our partners.

I find most are willing if it’s framed up for them in that way, and they feel more acquit. I also think women, unfortunately, can sometimes historically be bad at really being able to identify what it is that they need and then communicate it effectively. So, we do a lot of work around those kinds of communication skills. And then, also help the female partner have empathy for what her partner is also going through, because it’s not that the man is not affected, they actually are very effected. They just have not been socialized typically to be able to express that, to let those feelings out.

So, whenever she can see that it is not personal, that it’s really his way of processing that will help give her a little bit more tolerance for his reactions. And I think that that’s always helpful as well. But the sad truth is that I find that infertility is the type of crisis that often magnifies issues that have always been ever present within our own individual lives, as well as our relationship with our partners. So, sometimes this does reveal major, major dysfunction that can’t be fixed with just adjusting expectations or skill-building individually or within couples therapy sessions. And so it can create an impasse that then we have to switch gears for and see how we can support her moving forward.

Dr. Katayune Kaeni: Great. Thank you. Question number six. How are each of you adapting and modifying your current practice due to the recent limitations of COVID-19? Dr. Johnson, would you like to start?

7. How are each of you adapting and modifying your current practice due to the recent limitations of COVID-19?

Dr. Loree Johnson: Yes. So, I think the most obvious adaptation is I’m now seeing clients virtually as opposed to face-to-face. And that’s for a couple of reasons, obviously, we’re following the mandates from the CDC and their respective professional organizations that have suggested that this is what’s safest for the community. But also, because I consider, I work with a lot of women who are undergoing treatments for IVF or wanting to go, and at that point wanted to go under or had their treatments kind of paused, and when they resumed, it was really important to make sure that everybody was safe. So, we do know that exposure and even coming into the office, even on one-on-one, the risk might be lowed, but you also have to be really mindful of just your office space and being able to create a space that’s six feet apart.

And I know some clinicians are still seeing people, but now they’re using masks, or they might have some kind of filtration system. And I just personally didn’t feel like that. I didn’t want to take that risk for my clients because, as what has been said earlier, there’s a lot of investment going into the IVF process and there’s a lot of money, a lot of emotion. So, I’d hate to be that vector point in somebody’s coming down with this virus and potentially disrupting their treatment even further. So, the online format has worked really well. And I actually do some EMDR work, and I’ve gotten some additional training about what to do online with clients, and to make sure that that’s still impactful with some of the issues. So, that has been, I think, the main adjustment for me.

Dr. Katayune Kaeni: Great. Kathryn, any other adjustments you’ve made?

Kathryn Gardner: No, I think Dr. Johnson hit on the top ones. I’m also virtual one-on-one. Our local hospital did turn the perinatal loss support groups into virtual support groups. So, I have encouraged families to continue to reach out to those agencies and clinics that were offering groups, because they may be doing it just in a modified way. That we’re trying to get as much help as possible to as many. But yeah, most of the focus is now just going to telehealth and being in the basement, doing sessions.

Dr. Katayune Kaeni: All right. Is that about the same for you, Dusty?

Dusty Williams: It sure is, yeah, I’m 100% virtual as well, thankfully through simple practice, it’s made it quite easy to transition, but yeah. Same here.

Dr. Katayune Kaeni: Yeah, same here. Great. Then, we’ll move along to question seven. I know that a lot of people, like I said before, who are new to this might be now interested in getting more training. So, what specific trainings do you recommend to help clients struggling with infertility? 

8. What specific trainings do you recommend to help clients struggling with infertility?

Dusty Williams: I can definitely speak to this question and it’s really important to have the extra training in order to serve this population well and for us to feel really confident in being able to do that. Thankfully, there’s a lot of great training out there for clinicians. The American Society of Reproductive Medicine is where I would start, they actually have a three-part comprehensive certification course now. They didn’t, 14 ago, when I was getting involved. But over the last five years, they’ve developed a great program, it is fee-based, but it is something that I think would fully equip a clinician that is pretty green in this area to feel very confident and it’s only for mental health professionals.

It goes over the foundational understanding of biology, causes and medical treatment of infertility, ethics, psychological treatment interventions, fertility preservation, and research around that, third-party reproductive issues, such as the egg, sperm, embryo donation, surrogacy, special populations that are affected and genetics. So, very comprehensive, highly recommend that. Lots of CEUs that we’re always trying to find. So, it also would give you those.

I got out my trusty old handbook to show you guys too, this is the gold standard here. It’s the Fertility Counseling Clinical and Case Study Guide written by Sharon Covington. It is something I highly recommend to get, even if you never decide to go through a clinical training program, if you read this back to front, you would be very, very informed about many of the main aspects that are involved in treating this population well.

Also I highly recommend Ali Domar’s Mind, Body, Fertility training program. She is up at Boston IVF and Harvard Medical School. It’s an excellent way to learn the scientifically-validated psychological interventions that have been shown to significantly decrease anxiety, depression, physical pain, marital distress, and also increase pregnancy rates when going through IVF. So, wonderful, wonderful place to start as well.

Dr. Katayune Kaeni: Great. Thank you. We’ll move along to question number eight. What specific trainings do you recommend to help clients struggling with perinatal loss?

9. What specific trainings do you recommend to help clients struggling with perinatal loss?

Kathryn Gardner: So, I wrote down three different organizations that have the top, as Dusty said, just have the top trainings in perinatal loss. We do encourage, it’s not just our social workers and our counselors, our psychologists that can get the trainings from these organizations as well. I have seen a full nursing staff come in, labor and delivery nurses being educated, OB-GYNs and midwives coming in and receiving perinatal loss training in the room. What’s wonderful about all of those groups coming and receiving the training is learning the language, learning some of the psycho-emotional areas that may not have been addressed in their medical training. So really having them, if you’re a hospital-based clinician or if you’re a large clinic, it’s yourself and your colleagues coming into these trainings.

But the three organizations I wrote down. So Resolve Through Sharing is our largest. And that’s ResolveThroughSharingOnline.org is their website. Return to Zero: H.O.P.E, H-O-P-E, rtzhope.org is the Kiley Hanish. And her organization that, again, has trainings and sometimes they’ll come, she and her husband were here in Chicago a couple years back. It was just wonderful to meet them in person and receive the training from them. And then grief.com, David Kessler’s website. He has trainings and he is traveling around with his latest book, Finding Meaning, which is his step six of the grief and loss journey, after he and Dr. Kubler-Ross worked together on grief and grieving after her original book of On Death and Dying. So, some great resources for perinatal loss training.

Dr. Katayune Kaeni: Great, fantastic. I believe we’re going to be able to have these resources and maybe a couple of others for you guys available after the training. So, we’ll move along to question number nine, is EMDR appropriate for targeting negative core beliefs related to infertility? Dr. Johnson.

Dr. Loree Johnson: I definitely believe that EMDR is an appropriate treatment modality. When we think about infertility in general, it is a traumatic experience. And the experience of what happens when you go through a process of repeated disappointments or repeated medical processes that keep you in this wave of emotion that really translate into this lived experience that registers in such a way, where there’s this really intense negative charge. So, when you use a trauma framework, that really is about helping people reprocess their experience of these painful events, it makes sense to use EMDR or another trauma modality that maybe fits for you clinically.

But some of the cognitions that I see with some of the women that I work with are, there are probably two main ones, but I’m sure there are other ones too, but there’s something wrong with me or I must have done something wrong. It goes back to that self blame that I think we talked about before, when we’re trying to really create space for understanding a woman’s experience of what’s happening to her. So, I think that that’s, it’s one of many, but I do think that EMDR is an appropriate modality. For sure.

Dr. Katayune Kaeni: Dusty, would you like to add to that?

Dusty Williams: Sure. I’ll definitely quickly add. I totally agree with everything that Dr. Johnson just said. I think it can be a great modality to help treat, not only just many aspects of the traumatic experience of infertility, like Dr. Johnson explained, but also there are some deep emotional learnings that gets magnified and bubble up. The ones that she just mentioned, some other ones that I often see are, I’m a failure. There’s an issue of worthiness that often gets revealed, if they are deeply rooted attachment issues and schemas that are rooted in those issues. I often find a couple of other modalities even more effective than EMDR for specific ones that are, again, more attachment-related, such as internal family systems and coherence therapy.

So I think that it’s important for us to be able to dive deep when we need to. I often find that, again, these tenacious emotional beliefs and schemas that we may have been managing and battling for a lifetime get really, really, really exacerbated during this crisis of infertility. So, in treatment with my clients, we often veer off of just focusing on the trauma of in fertility, but going deeper and to transform these tenacious parts that have been causing some trouble and been around for a long time.

Dr. Katayune Kaeni: Okay, fantastic. Thank you. We’ll move on to question number 10. I think this is a big question. So, maybe if we can get some kind of brief listing of what are the unique experiences that patients go through when currently undergoing medical treatments? And just for time’s sake, if we can just give a listing here. 

10. What are the unique experiences that patients go through when currently undergoing medical treatments?

Dusty Williams: I think the big list is that with treatment now people find that they are in this whole new category of feeling broken. So, something that’s supposed to have been so natural, that their body was made for, now feels so artificial. So we’ve got to work on grieving the loss of just that alone and that layer to this process of grieving the loss of this happening in a natural, fun and free way.

I think the invasive nature of fertility treatment, with the intense medical appointments schedule, the rigid and painful medication protocols that the female typically has to go through, often makes them feel like their life is on hold. That they’re held hostage to their treatment calendars. Also, being very disruptive to her career. Many women do not have the flexibility in their workplace to attend the dozens upon dozens of appointments that are required going through a treatment like IUI or IVF, not to mention surgery.

Then, I think the other unique piece about treatment is that the way that a lot of women care for themselves and relax and have fun, they’re told that they have to stop, many types of exercise has to stop, which can be an incredible coping resource for women that they no longer have access to. They can’t drink coffee, they can’t drink alcohol, some have to stop taking their anxiety and depression medication that’s been supportive for them and they need it more than ever. But it’s contraindicated for moving forward with pregnancy, that’s big. And they’re often put on restrictive diets, especially with PCOS, which can be incredibly, incredibly stressful.

Dr. Katayune Kaeni: Right. And there are quite a few, many, many things in this question. It’s a great question. And certainly there’s a lot to know there. So, for time, we’ll move on to question 11, this question, how do I help women frustrated that IUI and IVF isn’t working, but who aren’t ready to lose their dream of conceiving a child?

11. How do I help women frustrated that IUI and IVF isn’t working, but who aren’t ready to lose their dream of conceiving a child?

Dusty Williams: Sure. A quick list that I have is, encourage her to seek a second or third opinion, if they haven’t already. Fertility and reproductive endocrinology is a fast moving area of science and many different providers have different approaches. Second thing is, explore all the other alternative paths to parenting, but here’s the big hang-up, when she is ready. That’s a very delicate thing that we have to be able to discern through the rapport of our relationship. Build resiliency in the areas that can help her persevere to keep on trying.

Research shows us that the number one reason why patients drop out of fertility treatment is not because of finances at all actually, it’s emotional and marital distress. So, if we can really build that grit and resiliency through a lot of good skill building, then they can typically keep pushing forward with more treatment and never rush her into giving up, stopping fertility treatment is one of the most difficult decisions a person can make. It’s a deeply personal one that we, as providers, cannot make for them. So just to never rush them and to hold space and help them get through it, if they’re wanting to continue.

Dr. Katayune Kaeni: All right, Kathryn.

Kathryn Gardner: Okay. I love that we look at it as their dreams. When we really talk about a fantasy and what we picture about ourselves growing up, we picture about the family that we came from, what we imagined about falling in love, or having a partner and really imagining this future. So, the dash of those dreams is so important to acknowledge in the counseling process. They may say to you, “I’m so high achieving in my career. Anything I put my mind to, I achieve. But yet here I am personally, and maybe very privately,” she may not tell colleagues, she may not tell others around her for the sake of her own embarrassment or shame, whereas we’ve talked about her own personal blame.

So, her desire to have a child and to share that dream with her partner, we want to talk about that. It can lead to frustration. Frustration is a very difficult emotion. Some women are told not to have that emotion and not given permission to talk about the things that bother them, talk about things that are not going well for them. So, it’s giving her the script, and the language, and really the empowerment, we talked about, Dr. Johnson used that word earlier, and I love it in all of this, it’s that empowerment. It gives her the coaching and encouragement that behind her, she is not alone and what she has done, she can find resources, and she can find her way through this path.

Dr. Katayune Kaeni: Okay. Thank you. We’ll move on to question 12. Dr. Johnson, how do you continue to practice and counsel others when you, the clinician, are going through fertility issues or miscarriages? Can you please speak to that?

12. How do you continue to practice and counsel others when you, the clinician, are going through fertility issues or miscarriages?

Dr. Loree Johnson: Yes. So, we know that being a therapist doesn’t stop us from being human. And there are a lot of us therapists who have gone through infertility issues while treating people who are in the community as well. So, I think the same practices of self-care that we really coach and encourage our clients to adhere to, are the same things that we need to do for ourselves. So, I think making sure that you have your own personal space to process therapeutically what is coming up for you, any countertransference and any countertransference issues.

But also if things are becoming a little bit too difficult or too challenging, it might be working with consulting, and working with your therapist around, maybe adjusting your caseload depending on where you are in your journey to make sure that your experience isn’t… Or how it is impacting your work in the room with clients. So, sometimes there are points of identification where I think we can identify maybe a little bit too much, because of what’s being mirrored, but at the same time, it’s important for us to make sure that we hold those boundaries. I like making sure that we use that in therapy, in personal therapy, our own personal therapy.

Dr. Katayune Kaeni: Fantastic. Dusty, would you like to add to that?

Dusty Williams: Sure. I think that sometimes you can continue to see a full load of this population and sometimes you can’t, and sometimes we don’t even know that we’ve reached that limit until we’ve gone past it. So, it’s about just really continuing to check in, do your own self-work, highly recommend having your own therapist. We are human and I encourage clinicians to, if your emotions can, they gently come up in the room, as your client is discussing their pain and you are deeply feeling that with them and even more so, because of your own experiences, you can use that, but be careful to not center yourself in the room.

It’s deeply personal work that most of us have, what we’re even drawn to, because of some personal, being touched personally by it. In some ways, clients love that, because they feel truly heard and understood by someone who gets it. But I think just even a very practical thing is just, you tear up a little bit in the room just to say, “I get it. I’m feeling that with you.” And wipe the tear away and focus on them and move forward. We’ve all had to do it.

Dr. Katayune Kaeni: Right. Thank you. Just in terms of time, I’m going to move on to question 13. I will wrap up there. I guess we are out of time for the rest of our questions today, but there are so many more that everyone out there might have, for sure. I think we are all available to you to send you to resources, ask questions, look for consultation around these issues, which we highly recommend. We’ve listed several really, really great resources for you here, but there are more. So certainly there might be some localized resources from local experts in your area as well. Yeah, I would just add in any final thoughts, any quick thoughts from the rest of our experts on getting into this kind of work. Dr. Johnson, can you give a tip or a pointer for anyone out there who wants to do this work?

13. Can you give a tip or a pointer for anyone out there who wants to do this work?

Dr. Loree Johnson: I think that when, like Dusty had mentioned, infertility or pregnancy loss has probably been something that has touched us all. So, in some ways I think it’s honoring the passion that you’re bringing to this. We get into this work, this field to begin with, because we love providing space and helping people. Yet, we find our niches, because of where life takes us. And I think there’s a lot of beauty, and honor, and power that comes from that. And I just love hearing other women talk about how to empower other women, especially during a time that can be so dark. So, I think just really honoring that energy and bringing that to the field or this niche is important and nice to see.

Dr. Katayune Kaeni: Thank you. Dusty, any final thoughts?

Dusty Williams: Not particularly other than it is truly some of the most rewarding work that I’ve ever been able to be a part of, to be able to walk someone through the path, and navigate such pain, and help them reformulate and discover their dreams that they never even maybe thought that they had as they continue to walk through this, it’s incredible. We need more clinicians doing it. I started my practice in Jacksonville, Florida, Northeast Florida, because there was no one owning this incredible need for my area and location. There’s still not enough.

My practice is full and I’m constantly seeking referral sources. So, I encourage people, if you have an interest, we want you, get into it. There’s plenty to see here. The other piece too, we didn’t get to the question on how do you handle becoming pregnant, therapists who become pregnant and supporting clients experiencing infertility issues? I know I was the one that was supposed to speak to that. I have a lot of good notes. So, if there’s any therapists listening today that are scared of that, that are unsure of how to handle it, email me, and I will just shoot you my notes on some very practical ways that I found helped me navigate that 10 years ago, that I think would be helpful for you too.

Dr. Katayune Kaeni: Great. Thank you. And with our minute left, Kathryn, do you have anything you’d like to add for final thoughts?

Kathryn Gardner:Thank you. No, it’s been an honor to be here today. I agree with my  colleagues here. We are in this field in our hearts. So, clinicians that are seeking rewarding work, we have all felt the respect and know the vulnerability of the clients that we see in this area. And we’re thankful that they have trusted in us to come through this darkness and to know that there is hope and that we are, we’re trying to have more of the community be aware of these topics. So, from hospital administration down to what’s happening in labor and delivery, what’s happening in fertility clinics, we hope that the referrals will continue to grow. So, yes, if you’re interested in this field, please seek out the training, because I’m hoping that more and more referrals are currently being created right for you.

Dr. Katayune Kaeni: Right. Absolutely. Thank you so much to our experts today. Thank you for being with us, being interested in this topic. We really do hope that you go get training and go and support this population. You are very needed. Thank you very much.

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