Ep 37: Hope and Healing: Conversations on Pregnancy and Infant Loss
Fertility Friday Episode 37:
Today your host Rena Gower is joined by three guests who each bring their unique experience and perspective on the topic of pregnancy and infant loss. We have Dr. Lucky Sekhon, a reproductive endocrinologist at RMA, Nancy Berlow, a social worker who has her own practice and is a consultant for a pregnancy loss support group, and Jennifer Browder, an inspiring woman who shares her story. Listeners can expect to learn about this topic from medical, mental health, and patient perspectives, giving them a well-rounded idea of what families go through who have suffered a miscarriage or lost a baby. Dr. Sekhon starts the discussion by talking about the prevalence of miscarriage, the feelings of guilt that many women experience, the various biological reasons for miscarriage, and why it hardly ever is due to something a woman did. Pregnancy is a complex process that can evoke a great deal of anxiety, despite the fact that reproductive technology now enables us to reduce the risk of miscarriage and can facilitate some of the processes to make positive outcomes possible. Nancy joins the conversation to talk about the importance of a support network when working through the loss of a pregnancy or infant, highlighting the various ways in which couples work through trauma and deal with loss in different ways. On this topic, Jennifer shares her experience with a stillbirth, multiple miscarriages, IVF, and the breakdown of a marriage, confirming Nancy’s point about finding people to talk to and help you process your grief. Listeners will also hear how they can support others who are grieving the loss of a pregnancy or a baby, how you should talk to your partner about what you are going through, and when you know you are ready to try again.
Rena: Hi everyone! We are Rena and Dara and welcome to Fertility Forward. We are part of the wellness team at RMA of New York, a fertility clinic affiliated with Mount Sinai Hospital in New York City. Our Fertility Forward podcast brings together advice from medical professionals, mental health specialists, wellness experts, and patients because knowledge is power and you are your own best advocate.
Rena: Hi everyone. Thank you so much for doing this and being open. I know this is such a crazy time and everyone is so inundated, but I just feel so strongly about this topic. And I really wanted to make sure that we recognize this, especially during the month of October and just call awareness to it. You know, I think hopefully this will be helpful to so many people struggling either themselves or who have, you know, friends or family that have gone through a loss. So I'm really, Oh , sorry my work from home companion dog is going to be joining us apparently. So I'm really, really happy to have all of you here. So what I'm going to do is I am Rena and I am the clinical social worker at RMA and I'm going to be moderating this panel between our lovely and knowledgeable guests who will each bring a really different and unique perspective to this. And we have Dr. Lucky Sekhon, who is one of the reproductive endocrinologists at RMA. We have Nancy Berlow, who is also a social worker and has her own practice, as well as as a consultant for pregnancy last support group, which she will tell you more about. And then we have Jennifer Broder who is an amazing and inspiring woman who's going to share her own personal story. So we're going to share the perspective from medical, mental health, and patient and hopefully that will be a really nice discussion to help everyone kind of just get more understanding about this. So I think what I would like to do is we'll start with Dr. Sekhon. And so I’ll tell you guys a little bit more about her first. She's a reproductive endocrinologist and infertility specialist, a board certified obstetrician and gynecologist and assistant clinical professor in the Mount Sinai health system. She has particular expertise in fertility preservation, LGBTQ family building, and in vitro fertilization. She grew up in Toronto, Canada and moved to New York City in 2011 to complete her OB/GYN residency and fellowship training at Mount Sinai. While Dr. Sekhon maintains a busy clinical practice, she continues to publish and present cutting edge clinical research in the field of reproductive medicine. She's passionate about educating women about their reproductive health and family building options. Thank you so much for joining us. And it's so good to have you here because I think there's so much sort of surrounding the kind of lack of information about miscarriage. And I think oftentimes people hear about it, but until either it happens to them or someone close to them, they don't realize how common it is. So I would love for you to share with everyone the medical piece of this, what might cause a miscarriage? You know, I know oftentimes many of my patients will blame themselves, which is never really the case. So is there something you can sort of share medical perspective on what might cause a miscarriage and let's start there.
Lucky: Sure. Well, first off, thank you so much for including me in this panel. I think this is such an important topic regardless of the month we're in. I, you know, this is one of the hardest things that I deal with in my job, helping my patients through difficult situations like having a miscarriage and particularly patients who suffer with recurrent miscarriages, but even before I became a fertility specialist and I was doing general OB/GYN in my training, I remember being so shocked and surprised at how many miscarriages occur all the time and how common it truly is. And I think now it's becoming a well known fact because people are talking about it. We have a month to recognize it and really open the discussion and have a dialogue. But one in four is a very real statistic. And I think it's unbelievable to a lot of my patients when I tell them this. And I counsel all my patients, even if they never had a miscarriage, that this is something that they should have on their radar because it's largely a part of human reproduction. There's just so much inefficiency built into the reproductive system. And it has nothing to do with eating the wrong thing, being too active, not being active enough, a medication you took before you realized that you were pregnant or other exposures. Like you said, a lot of people want to find a reason and blame themselves. But a lot of miscarriages, the majority of miscarriages, stem from the fact that a lot of embryos form from our sperm and eggs that aren't really destined to result in a live birth because a lot of the times they don't have the right amount of chromosomes or DNA. Why these errors are so common, there's a lot of theories about it. We know that a lot of these errors are, tend to be introduced from the egg but they could be introduced from the sperm as well. And a lot of it stems from the fact that we, as women are born with all of the eggs that we're ever going to have, and we can't repair the eggs. Unlike your skin if you have a scratch, there's an automatic regenerative process. Our body doesn't have that regenerative process for our eggs. And so the machinery that's supposed to count the number of chromosomes and make sure that each obsoleted egg has what it takes often breaks down. And that breakdown tends to become more marked as we get older particularly over the age of 35. So it becomes more common to have embryos form that don't have 46 chromosomes, which is what they're supposed to have. And a lot of these embryos will stop growing before they can implant, but sometimes they'll start to implant and then stop growing. And I would say about 95% of miscarriages stem from that type of problem where there's an imbalance in the amount of DNA. But there are also a lot of other reasons why miscarriages can happen, including, you know, structural abnormalities in the inner lining of the uterine cavity, whether it's polyps, fibroids, or scar tissue, or having a septum, which is something you're born with. It's basically a wall in the middle of the uterus. That's a rare cause. Some women can have blood clotting disorders where there's a tendency for formation of blood clots in the small blood vessels that are connecting the implanting pregnancy to the circulation of the mom and that can stop an embryo from getting vital nutrients and oxygen. So those are just a few of a few examples and some patients have underlying immune issues and those are harder to diagnose, but they can definitely be contributors to miscarriage. And 50% of couples or individuals with recurrent pregnancy loss, you're going to do the whole workup and not find any real cause. And I think that's what makes this such a difficult problem because you're not always going to have an answer as to why.
Rena: So is there any way to predict for miscarriage?
Lucky: Well, yes and no. I mean, there's definitely things that we look at when we're following early pregnancies that might be certain red flags that indicate that a pregnancy may not be healthy and be at high risk of a miscarriage. If we're monitoring patients from a really early stage, we could be clued into this by the hormone level, beta HCG, not rising appropriately or on ultrasound, if we're measuring the pregnancy and it's looking like it's behind what we would think that it should measure according to when we think a woman ovulated, or if we know that we put an embryo back on a certain date, we have expectations of how the pregnancy should be developing. And if it's falling short of those expectations, then you know, we'll have to tell the patient that this is a potential outcome of this pregnancy, but it's hard because there's always outliers. And so, I think pregnancy in general is a very complicated and stressful journey and it's filled with these milestones and having gone through pregnancy myself, I can say it's very anxiety provoking and I feel like you're always moving the goalpost. So at the beginning, you want to make sure your beta HCG hormone level’s doubling. Then you want to make sure you're seeing a heartbeat by six weeks. And so there's just this series of goals and milestones that you're just trying to get through and it it's, it's hard. I mean, you have to just kind of wait and see how things develop and that's the same for diagnosing a miscarriage. You can't always make the diagnosis right away. You kind of have to wait and see how things develop over the course of days or weeks.
Rena: And do you think that using any sort of assisted reproductive technology, be it IUI, IVF, whatever, can that help quote unquote prevent miscarriage or not related?
Lucky: It definitely can. You know, we talked at the beginning about how chromosomal errors or imbalances in the amount of DNA accounts for a large majority of miscarriages that happen. That's why one in four pregnancies are affected by miscarriage. A lot of the times we know, even beyond age-related causes, we know that even in a woman's twenties, if we were to take all her eggs, turn them into embryos and genetically test those embryos, I could expect about a quarter of those embryos to be affected by these chromosomal errors. So it's that common and that's kind of as good as it gets, right? That proportion rises as we age. So that's the number one cause of miscarriage. And there is a way to test embryos and actually quantify the number of chromosomes that each embryo contains . So if that's the underlying issue, you know, particularly in women in their late thirties, early forties and beyond if they're having recurrent miscarriages and we think it's just because of this higher frequency of observations involving an egg that doesn't have the right amount of DNA, they could undergo IVF and we could use technology to screen or test the embryos and count the number of chromosomes and embryo has and only put back an embryo that has 46 chromosomes and that we know is genetically normal, and that's going to greatly reduce their chance of having another miscarriage because it's getting around the issue, the core issue at hand. If there are other known causes like uterine factor, you know, if someone has a septum that wall, the uterus, there are simple procedures that can be done to rectify that and make the uterine cavity more hospitable to an embryo that's trying to implant. If someone has known blood clotting issues, we can give them blood thinners. So if you identify the cause it's usually very reassuring because there tends to be an action that can be taken to rectify the risk of future miscarriage and to prevent it. But the problem is, like I said, you're not always going to find a known target. So a lot of times, sometimes we're blindly treating and basically we're going with our gut instinct. Like sometimes I'm going to start baby aspirin or blood thinner on certain patients. If I have a high suspicion, a high degree of suspicion that there might be something going on with blood clotting that we can't necessarily test for. And same with immune causes, there aren't really any good tests for immune causes of miscarriage. And a lot of times, if we have a high degree of suspicion about that we might treat with steroids. But again, I'm very clear with my patients about the things that are really targeted treatments and proven by well-designed studies and the things that maybe don't have as much proof or backing to them, but maybe they're worth trying.
Rena: But I think - thank you so much for all that information - I think it was so great because we're able to see it just by listening to how much of this really is science-based. I have so many patients who will come to me and they'll blame themselves and say, well it's because I stood on my feet for too long or I went on an airplane or I didn't get a good night's sleep. And it doesn't sound like, you know, people want to make sense of things. They want a cause and effect, but it doesn't sound like any of those things lead to miscarriage. It's not because you stood on your feet or went on an airplane. It's because of all the things you discussed which are pure biology,
Lucky: Right. And there have been many studies that have looked at impact of stress, exercise, diet, and there is no single lifestyle-related causative factor other than we know that there are certain risks, at-risk behaviors like heavy cigarette smoking is definitely associated with miscarriage. And that's something that is not up for debate. But aside from that, I would say there aren't very many lifestyle factors and stress definitely is the number one culprit that everyone likes to blame and I think it's human nature. We all have a tendency to want to search for answers. And I feel like women in particular are very quick to want to find a reason because it makes them feel like it's something that they can avoid in the future, but there is a lot of self-blame and I don't think any of it is backed up by science.
Rena: I'm so glad you also touched upon the stress and exercise and diet because I think that's something people commonly look to also or if they've had perhaps recurrent loss, they become almost paralyzed with fear. And so then they restrict everything for themselves and they're afraid to exercise and they're afraid to kind of live their life because they're afraid that's what led to a miscarriage. And I don't think that's the answer either.
Lucky: I also think there's a lot of unsolicited advice out there from well-meaning friends and family members. Right? I remember being pregnant and my mom telling me that I shouldn't be working out and I should be doing this and I'm like, I'm an OB/GYN. I got this! But it's definitely, I think society can make it easy for us to blame ourselves because there's a lot of misconceptions about the link between miscarriage and certain behaviors.
Rena: Sure. And I think too, especially as women, you know, and it's our bodies and that's what we go to. And I'm so glad we're having this panel to hopefully shed light on this. So I want to move on to Nancy Berlow to share the kind of mental health side to balance that out. So first off, tell everyone a little bit more about Nancy. She has been the consulting social worker for the pregnancy loss support program of the national council of Jewish women since 2011. In this capacity, she trains and supervises the volunteer counselors who provide support to PLSPs bereaved clients which includes facilitating support groups and one-on-one telephone counseling sessions. Prior to her PLSP position. Nancy ran the pregnancy and infant loss support program at Northshore University Hospital on Long Island for 12 years. She maintains a private practice counseling patients who have suffered perinatal losses and other bereavement issues. Thank you so much for joining us, Nancy. I'm so happy to have you here as someone who really specializes in specifically miscarriage and loss and the mental health side, do you want to start maybe by telling us a little bit more about PLSP and then we'll go from there.
Nancy: Sure. So thank you so much for the opportunity to talk about pregnancy loss and the opportunity to talk about the mental health aspect and to let everyone know about the pregnancy loss support program, PLSP. As you said in the introduction, PLSP is actually, there are several professionals who oversee the program, but the actual work is done by trained volunteers who are peer volunteers and they do the work and what we offer is a nation-wide telephone counseling for free. And we also offer support groups that used to be in place at our office in Manhattan, but now we are doing virtual support groups so people can join from all over. And then we have two different types of support groups. We have the first trimester support group that meets once a month. And we have later term losses that meet for six consecutive sessions weekly. And those are closed groups. The first trimester loss is an open group and people can join. We ask them to contact us, but to let us know that they're going to be participating. But the six week is a six week group is a closed group and people sign up ahead of time and it's facilitated. All of the work is done by our trained peer volunteers. And then I supervise their work. The social worker supervises their work. And it's a very, very comprehensive program in that people who are actually doing the work as trained volunteers are people who have received support from us and then once they are at a stage where they're ready to where they want to give back where they feel like they are past their loss or have had a subsequent good outcome, then they come back and ask to be trained so that they can help other people. It's about kind of a full cycle type program. We also offer pregnancy after loss support and that's via telephone counseling as well. And we also have a lot of resources, so people can contact us for resources. We have online resources and, you know, we always try to give as much help and support as we can or direct people to what they might need.
Rena: That's wonderful. And I think, you know, all this stuff that you guys offer is incredible. And I think hearing about everything you do offer, I think really makes it so apparent that support is so necessary during this. You know, you offer all different kinds of support and it's really important that you get support. That's why there are organizations like yours out there because this isn't something someone should have to go through alone. And I think support is a really key part of the process.
Rena: So I guess going back a little to what Dr. Sekhon and I were talking about before sort of women blaming themselves, I'm sure that comes up a lot in your work. So can you maybe speak to the mental health perspective on that and how you would talk to them and through that kind of self-talk if they have had a loss and they're blaming themselves?
Nancy: Sure. So that's a very common experience that people will express that they feel that they, you know, as human beings and as particularly as women, we all look for what we could have done differently and what we could do to change an outcome. And so the work that we do at PLSP is we try to give support and let people know very similar things to like Dr. Sekhon said, and you've said, Rena, is that it's not anything that anyone could have done to change the outcome. So we give a lot of support the most, we enable people to tell their story and recognizing that each story, each one is unique and everyone has their own experience that they're bringing to, whether it's with their counselor on by phone or whether it's in the support group. But we really recognize that. And we do a lot of listening without any judgment. And we think it's really critical that people, that their stories get to be heard and that we give them space to express themselves and to grieve and to have the opportunity to feel that they’re what they've gone through is legitimate. And one of the things our program does is we offer support at any gestational age loss and we recognize that someone who may have had a first trimester loss might feel just as devastated at someone who has a later term loss and we don't make any judgment to it. But we have done is, like I said, we've divided the support groups because we have found that women who've had first trimester losses feel that they can identify more with those types of losses. And people have had later term losses feel much more connected to those experiences. All our support is provided for men and women and so we encourage the women to, they usually reach out to us, but we encourage them to invite their partners to either be on the telephone counseling, or we can pair them with a different counselor. It could be a male counselor, or we also counsel same-sex partners. And we also encourage people to come with their partners into the support groups, but it's not required. But we do recognize that a loss can have a big impact on a relationship and it really depends a lot on how the couple has been communicating prior to the loss and how their, what their functioning has been. But the loss can really be very uniting. It can bring a couple together, but it can also really tear them apart because they might feel guilt. They might feel inadequate. They might feel that they haven't explored every option. And then they also, if they don't feel comfortable talking, there can be a lot of tension between the couple. So we also recognize that partners grieve differently and it can really impact on how they move forward, move through the loss experience. And we call this kind of grief incongruent grief and it's not something that's bad necessarily, but it's important to be aware of it because it's really, it's really vital that we give people the space to communicate about their experiences.
Rena: I'm so glad you touched upon the partner aspect because that was definitely something I wanted to bring up. You know, we spend a lot of time talking about just the , the carrier, but what about the partner, if there is one and sort of what role, you know, we don't want to forget about them because they're very much a part of this and it's so important, I think for them to seek support also.
Rena: And I think it's something you touched on too . The incongruent stages of grief as something I know I work with on a lot with my patients, helping them to understand, you know, there are five stages of grief and if you're in a stage of denial, but your partner's in a stage of anger, then you guys aren't aligned . And it doesn't mean that you're both not grieving, but you're grieving differently. And that can cause a lot of tension. And it sounds like that's something you guys really work on to help people understand and work through, because I think that can be really, really difficult.
Nancy: Absolutely. One of the things that I, before I even introduce stages of grief, I like to also talk about that perinatal loss in particular is what we would call disenfranchised grief. And that disenfranchised grief is a grief that's not acknowledged by society. It's really kind of an invisible grief. It's very misunderstood and people really feel alienated. And that can cause, that disenfranchisement can cause even further stress on the woman and her partner and on finding ways to recover and heal as people go through the experience.
Rena: Yeah. And I think that's something I talk about a lot with my patients too. I guess I usually call it intangible loss, but same like, yeah. And that in our society, if someone passes away, we have societal things to do, right? We have a wake or a shiva, a funeral, whatever society is dictated and people understand how to mourn that loss. And even during COVID, we saw that that was even taken away from us. And so people were faced with how do I, if I can't go in person and I can't be there. And so more, I think of the general population was experiencing this, like, wait a second, our coping mechanisms to grieve what we know are taken away. And I think that is very parallel with a miscarriage. And that, unfortunately right now in society, we don't have like a playbook of, okay, well, this is what happened now here, family and friends, this is what I need you to do. We don't have that. And I think that's why so many people suffer alone. They don't talk about it and they don't really know how to walk through it. And so I think understanding it and coming up with ways to mourn that feel right to you I think is a really important part of the process.
Lucky: I also think it's a particularly isolating problem because in my field, when patients are going through fertility treatments, a lot of them don't want the added pressure of friends or family members asking them about the outcome of their cycle that they were going through. And so a lot of times, no one around them knows that they're pregnant other than if they have a partner, they probably know. So when they experienced a loss, I think it's so isolating for them because they haven't really had that normal support system of family or friends that would normally be very checked in and tuned into whatever's going on in their life.
Nancy: Yeah, absolutely. I also like to mention, I, when I talk about the perinatal loss, I also, I think it's important for us to acknowledge, especially in this forum, that a failed cycle of IVF is also a form of loss and people who get to the stage of even as they as they've approached all the testing that they might've gone through and then, or have had prior losses or just unexplained infertility and then they get to the stage of IVF and the cycle is not successful. That's another form of loss. And I think sometimes we even forget to acknowledge that as patients are going through it.
Rena: Sure. I mean, I think that's , that's something I talk about frequently with my patients. It's sort of loss after loss, after loss, whether you want to call it disenfranchised loss or an imtangible loss, but even the last of not being able to conceive naturally in your home. Whether you are getting, going to the doctor to get your blood drawn, you know, or do IVF, it's still a loss because you're losing that picture you had for yourself that you'd conceive at home, you pee on a stick, you'd have the element of surprise. That's all taken away. And so I think it's really important to recognize that and allow yourself to grieve those losses as you go throughout the process. But I want to actually bring Jennifer into the conversation too. Let me, um , introduce her bio really quick, because then she'll be great to weigh in also on the loss factor. So I'll tell you guys a little bit about Jennifer first. She is an infertility warrior, a pregnancy loss survivor, and a PLSP participant and volunteer. She is the senior vice president at a New York City event design and production firm where she works with various brands on product launches. When Jennifer isn't working with her team, you can find her spending time with her husband, Dustin and pup Roxie in their Park Slope backyard or catching up on the latest binge worthy series on Netflix. So thank you so much, Jennifer, for being so brave to come on. And Jennifer is actually the person who told me about PLSP so I thank her for bringing PLSP to my radar. So I would love for you to kind of jump in and as someone who's experienced loss yourself and, you know, weigh in on the conversation, that sort of anything we've been talking about, because I think your perspective will be so important to add to this.
Jennifer: All right . I'm well, thank you for inviting me to join. I will just start off by giving a little background into what I've been through. I've kind of touched on, experienced a few things that we've talked about. So back in 2014, I was diagnosed with PCOS as well as Hashimoto's, a thyroid disorder. And I was able to successfully get pregnant on a third IUI and that subsequently ended in a stillbirth. I was a little over 23 weeks, which that then don't think it was the only reason, but it did lead to my marriage ending in a divorce about a few months after the loss. So a lot of what you've talked about, I've experienced with incongruent grief, making sure that you have communication. And then since then, though, I've been able to find joy. I am now married, as you mentioned, and we are on our journey still to start a family. I have experienced two miscarriages since my loss and we are working through IVF. So I have kind of a, a little bit of experience with everything that we've talked about. I think one of the biggest things that we've discussed that really stands out is making sure you have that support. It is so isolating. When I had my stillbirth, I didn't know anybody that had gone through that. We had really been the first of our friends. I think 12 people got married the same year we did. And we were the first of our friends to get pregnant. And then after my loss, it was kind of a domino effect. Everybody announced their pregnancy. So I didn't really have many people to go to. And the one thing I remember being really helpful right away was the hospital I was at mentioned PLSP. I reached out right away. I also contacted a therapist. And then also one of my best friends, I guess she knew somebody who had gone through a loss and put me in touch right away. So that's something as I look back on my journey, that's been really important, is connecting with people. And I'm at a point in my journey where I talk a lot about my stillbirth. As far as IVF and the miscarriages, that's something I feel like it's very current. So it's something that I don't discuss as much, but I have found core people, including a therapist, two therapists, to discuss it with. And without that, I think it would be very difficult. I also, in what Nancy mentioned, I did go through the phone counseling from PLSP as well as the in-person late term support group. But what makes my participation unique is because I went through that divorce I was focusing on multiple traumas at once. So I didn't really think I was ready to go to an in-person support group where probably everybody was partnered. So it wasn't until I reached out, I believe it was last year, to volunteer and see how I can get involved to where they told me, you know you can still participate? And I did. And it was really eye-opening because I think there were a few things that were really unresolved for me, that hearing from other people in the group really helped me wrap my head around.
Rena: I think it sounds like you're building out your supports and that was so helpful. And you are so brave to take that step and pick up the phone right away. I think that's incredible and speaks so much to your strength. But I'm wondering too, what about someone who isn't feeling that brave? You know, I think oftentimes asking for help and taking that step is the hardest. So what about someone who is scared to do it or doesn't feel like they can? Is there anything, you know, anyone on the panel, thinks would be helpful to say to that person?
Jennifer: I would say for me, a few of those things I didn't do on my own, it was really kind of a, every like, get everybody in my life, like assign something to help with. And so somebody else found that therapist for me, um , somebody else found PLSP. And the one thing that I would say, even if you're not ready for support, for me coming home from the hospital, the biggest thing was finding I needed to have something to do because I had identified so much with being pregnant, getting ready to have a child, even though I was only 23 weeks, perhaps, maybe not going back to work, all of these things I had so identified with that, I left and I was like, I don't really even know who I am. And so I didn't know what to do. So I just, I came home and it was like, I needed one thing to do a day. And so sometimes I would go to that therapist that someone else contacted for me. And I would just sit there because that was my thing to do for the day or walk to Starbucks and try to get a coffee, which that sounds so easy. And now it baffles me that that was a struggle walking around, being around people, people seeing you, um , especially I was I was showing and I lived in a doorman building. So those things are hard. You just want to hide, but you have to find somebody whether whoever that is, or, or even if you have to do it on your own as far as like one thing a day. And that was really, I think what helped me put one foot in front of the other.
Rena: Well , I love that you, you said like even going to Starbucks, which seems like it should be easy. Like, it's not. And I often tell my patients, like you got out of bed, you're here. You had breakfast. That in itself - gold star because it's not easy.
Nancy: Absolutely. If I can just add, I also think when we try to help patients know what to ask of family and friends one of the things or family and friends ask us, what can we do? One of the things is just to be with the person, just let them be and let them be, even with finding comfort with silence, if they need silence, but making sure that they know that you're there to give support. And also as a family or a friend could say, I'm bringing you dinner, but you don't have to speak to me, but I'm here for you just letting them know that you are there for them and that the person who is grieving knows that they have a safe space even if it's there in the presence of other people who can give them the support.
Jennifer: And to that point, letting them know that you're there. I vividly, I remember coming home from the hospital. And one of the first packages I got was a little grocery box from a friend who lived in another state and there was a yogurt In there, a brand that we always talked about liking and five plus years later. That's what I remember. So even, and I try to remember that when I'm providing support to other people now is just a text of thinking of you. And that's usually enough to say, if, you know, if that person's ready to engage, they will. And if not, they know that you haven't forgotten what's happened. And I think that's really important because as time passes people move on and they forget and you're like, wait, why is the world moving because my child is still not here with me. And I think that's really hard.
Lucky: I also think there's an element of avoidance. A lot of people don't know the right thing to say. So they'd prefer to just kind of brush it under the rug. And maybe they make the assumption that the person going through it wants a distraction and doesn't want to focus on it. And I think that sometimes might be true, but it can also be really hurtful to that person if their friends or family members aren't acknowledging what they've been through.
Nancy: Absolutely in our society there's a lot, even in what we call normal, a normal grief, there's, there's a lot of discomfort with loss. There's a lot of discomfort with grief and people not knowing the right thing to say. And like you said, Dr. Sekhon, people will avoid it or they'll try to distract the conversation to something else because they have discomfort with it. And I actually even think that it happens in certain, even with, I used to do some training with the medical teams. And, you know , I think that even doctors who they're in business to provide a healthy outcome. And so if their patient has had a loss, they sometimes are at a loss of what to say. And so we try to help them understand that just by being with the patient and saying, I'm so sorry for your loss. That can mean so much to the patient to hear something like that.
Lucky: I think you're totally right. I think as doctors, a lot of us are programmed to be fixers. It's really, it is really uncomfortable and difficult, especially if you can't diagnose what the underlying cause is, that can be a really hard thing for a doctor to reconcile, to not have an answer.
Rena: I sometimes talk with my patients who they want to disclose something, you know, be it a loss or that they're doing IVF or whatever, but they're afraid to do it because they're afraid that if they tell a family and friends, if the response isn't going to be supportive. And so we often sort of walk through an exercise where, you know, I say, I know this is unfortunate because it's another thing you have to do and you're already the one dealing with all this, but you have to set someone up for success. So you have to think, okay, here's what I'm going to tell them. And then you need to give them an action plan. So I'm going to tell you this difficult news, and then I need you to check on me every day, or I don't want to talk about it after this so please don't ask me. Or just text me a heart emoji every day. Whatever you're thinking that you need because that way you're setting yourself up for that support and not to then be disappointed because you feel like, well, I told my friend and then she never asked me about it again. Well, it's not necessarily because your friend doesn't love you or care about you. Your friend probably just doesn't know how to handle it and thinks, well, if you wanna talk about it, you'll bring it up. And so I think communication is so important, both checking in with yourself to find out, okay, this is what's going to feel supportive for me right now. And then being brave enough to share that with others. And I think that's how you'll get what you need when you reach out for support. And I think it's hard and I think what you might need one week, isn't what you might need the next week. When we, you might want someone to check on you every day. And then after that, you're going to feel like, okay, woah that’s too much noise. I don't want you to check on me next week. I need a break and that's okay too. But I think it's a constant sort of checking in process and communication process.
Nancy: Absolutely and what you said is right to the point of that. Sometimes it's , it's upon the patient to kind of be the ambassador to, to get what they need and we feel burdensome, but ultimately it will improve what the support that you're going to get, but it can be very difficult at the same time.
Lucky: I think that's good advice for couples too, because we talked about this earlier, but I treat many couples and you can tell everyone in the couple might have their own way of reacting to trauma. And some people suppress and sometimes the suppression can be misconstrued as you don't care about this or this isn't affecting you as much as it's affecting me. So I think knowing that your personalities and the way you process and deal with stress is different. I think it's important to be proactive about telling your partner what you need. And I know Nancy, do you have recommendations? I know I'll tell my patients to try and kind of curtail how much they're talking about something like this with their partner. You want to make sure that it's not 2/7, because then you're only going to associate this grief heavy stuff with your partner. And you want to, that's why it's so important to have other people hold space for your grief. Nancy, do you have similar recommendations?
Nancy: Yeah. We actually have this. I don't know if you wanna call it an exercise or a recommendation that we call the 20 minute rule.
Rena: Oh yes. Me too.
Nancy: And so yeah, 30 minutes. It can be 20 minutes. It can be 40 minutes, but you want to designate, so each person gets 10 minutes, let's say in a couple. And then they will talk about where they're at with the loss, the grief, what their feelings are, how they're reacting to it. And the other person has to listen, remain silent and no judgment, no judgment can be made. And because people are at different places. And so if each person in the couple can hear where the other person's at, it can be very effective. So a 20 minute rule that you do once a week or you do twice a week or you do, but that way it's contained so that it doesn't envelop your entire life. And I think initially after a loss, some people are just so immersed in their grief that they might not be able to contain it to a specified amount of time, but over time, especially to help communication within a couple, within a relationship, it could really be very effective.
Rena: That's exactly what I recommend too. And I say, look, of course, in the aftermath of something, sure, you're not going to be able to talk about it 20 minutes once a week. But as time goes by, I like to have people send each other calendar invites and put on the calendar, come up with something fun to call it and that's it. And then after that, you know, again, you go to your other supports, you let other people hold space for your feelings. Journal. Journaling is really helpful. And then you try and do things consciously with your partner that you enjoy so that you're, you're not, you know, only associating your partner with the heaviness of this. And what about timeline for grief? You know, I , I'm sure you also, you know, I get people who say, well, will I ever get over this? Is there a timeline?
Nancy: Well, before I answer, Jen, do you want to talk about your experience first?
Jennifer: Sure. Gosh. I would say yes and no. So I remember some actually I think it was my PLSP phone counselor. She said to me one day and I started talking to her probably the week after I came home from my loss and from the hospital. And she said, one day, it won't be the first thing you think about. It'll be the second. And then it'll be the third. And as frustrating as it is time, it helps. That's all. I there's really no, sometimes no formula you have to put in the work, but I think really time does play a big role. But I think what's really sometimes triggering and frustrating with grief, especially related to this loss is sometimes it just comes back and it pulls you, I would say, probably not right back where you were that very first day or very first week, but it can pull you pretty hard back to where you were. And I think that's really shocking. And I think that's one thing through PLSP that I learned and it made me aware that like this could happen. It's not a straight line. It's kind of squiggly and you could have a trigger. It can be something you're watching on TV, which until you've experienced some sort of loss, you don't realize how much it's on TV, um , and how there's nothing that's safe sometimes, but it does, it really can bring you back. But I will say like, as far as a form of hope, it does get better. Sometimes I think back and I'm like, I don't know how, I don't know how I made it, how I'm here other than time and the right support. But it's important. I think it's sobering for people to hear that some days are going to be bad even five years later, but I'm able, at this point, speaking from my experience at the beginning, if I was, if something triggered me and I was upset, I'd be down for the count. I'd cry. And that would be it. And I'd probably be out of commission for the day. Now I can recognize my feelings, honor those feelings, and get back on my feet and keep moving, which I would never expect that to happen, but it does. But it's, there are a lot of triggers, especially if you continue to try to build your family and you're putting yourself back there in the same appointments, in the same environment. And there's a book that I read that is about PTSD and infertility specifically. And I think it's a really good read and it reminds you, this is real and it's not in your head, which was very helpful for me to know.
Rena: Are you talking about PTSD and infertility the Uncharted Storm?
Rena: Okay. Yeah, we can post that . That's a really good book. I'm glad you brought it up. It's called PTSD and Infertility the Unsighted Storm by Joanna Clemens . And we're actually, we're going to release this as a podcast also. And see if you go to the fertility podcast, we actually interviewed her on our podcast. So she's one of the episodes. You can find that too. It has really good. I'm so glad it was helpful for you. I definitely recommend it to a lot of my patients, really good exercises, as well as I think a really easy to understand text and information like, okay, wow this is what I'm experiencing and this is why. And I think probably the combination of the two are really helpful.
Jennifer: Yes. Absolutely.
Lucky: I definitely see symptoms of PTSD in a lot of my patients who've had a history of miscarriage. And I find that it's so heightened when they're pregnant again, especially in the weeks leading up to that time point where they experienced the loss. And I think until they can get past that time point, it doesn't get better. It kind of intensifies as they approach it and then there's like a sense of relief, which washes over them the further they get out from that time point. But like I said, I think there's just this, it's a series of milestones and that's how people, a lot of people approach pregnancy, especially in the face of prior losses where you're just kind of holding your breath and waiting till the next appointment and then feeling relieved momentarily. But then you're anxious about the next goal post and it can be really hard. And so I think it's, it's not a sprint, it's a marathon and you need to surround yourself with all the supports possible to get through that because it's, it's an ongoing process.
Rena: I'm so glad you said that. And I think Nancy, I'm sure you can speak to this too, but I definitely, for my patients that have a history of loss, you know, I always talk about, I always want them to continue their care once they're discharged from RMA, because I do think they're at an increased risk of perinatal anxiety and depression, and as well as postpartum. And those are often my patients that will say like, you know, I hear from them and they'll say, I'm not enjoying my pregnancy. I'm so anxious. I cannot enjoy this. We don't want that for you. We want you to be able to go on and nest and look at the apps at what size fruit your baby is and start to feel joy. And it doesn't mean that it's going to be easy and it doesn't mean that, you know, you wake up and you're pregnant and poof . Everything's great. It's an ongoing process. And I think it's really, really important to continue to get the supports because I think it's certainly is possible to get to a place where you can enjoy your pregnancy, but it's hard. And I think as Jennifer touched on, everyone's sort of touched on all these things, all these milestones are triggering and it's bringing up PTSD and trauma. And so to understand how to deal with that and cope with it is really important in helping you get through to a place where you can feel like, Oh wow, I'm actually really enjoying being pregnant. You know, there's always going to be anxiety about something, but it doesn't have to be so debilitating that you feel like you can't breathe for, you know , nine months. And so I think that's really important.
Nancy: Yeah. I just want to add that really. There's no formula that we can say, if you do this, then this. It's finding support. As you said, Rena , and, and knowing that you have some safe spaces where you can be held, whether it's in the aftermath of a loss or as in a subsequent pregnancy. And there's something that we call shadow grief, which can be the rekindling of grief based on what could be due dates or conception dates or the anniversary of the loss. And it's natural. And it's the same way we react to losses of our loved ones. We react when it's someone's birthday or an anniversary or something like that. So it's natural for people to have these experiences. And that's one of the things that we're very conscious of at PLSP is that now that we do offer pregnancy after loss support and it's, it's actually once a month counseling, telephone counseling and it's, but it's particularly available around the date or the experience of what that previous loss had been. So if someone had had a loss at 15 weeks then we make sure that that person is getting extra support around that time, but the support will continue up until they deliver and have a healthy outcome. And that would be really kind of more of an on a once a month basis, not like our initial telephone counseling, which is once a week. And once a week telephone counseling is actually three to four sessions is how we structure it. And we try to help then encourage people to get into a support group, because what we're doing is not offering professional counseling. It's, they're professionally trained peer volunteers, but they, then we need our volunteers to counsel other people. And we also want to make sure that the client counsel-e is getting professional support if they need it.
Rena: I think that's so great. And I am so happy PLSP has these services. You know, I think, you know, as Jennifer said, it's so important to honor your feelings and it's okay to honor your feelings and feel sad about your miscarriage or a loss, but also be moving forward in your journey. And I think a lot of times people have a really difficult time with that and they feel almost like they're not honoring the loss and how can I move forward? And that's almost not honoring the loss and not taking that into account. And they really struggle. And I think it's possible to work in parallel and mourn your loss and process that while trying to move forward. And I think, you know, again, it's, it's honoring your feelings and saying that it's okay to feel sad about something, but also excited about something else. And I think that's something can often be hard to reconcile. And I know we have to wrap up soon. I feel like we could talk for a long time about this. I guess one more question I have for Jennifer that I I'm sure a lot of people are, are wondering is how did you know that you were ready to try again? Was there some sign from the universe? A feeling you had? I mean, you're so brave to share your story and what you went through is so difficult and then to get back out there and try it again. How did you know it was the right time?
Jennifer: So I guess I'm in a little bit of a unique situation. So right after the loss, once I got cleared to try it again, that's all I wanted. You would think that you're too afraid. You don't want to do it, but for me, and from what I've heard from a lot of people who have experienced a loss, as soon as they can get clearance, they want it because you think like once I have that baby, that's going to fix me. That's the only thing that's going to make it better. So I was ready. We got that clearance and I was like, let's go then life took a different turn. And I think I tried one IUI and then my marriage shattered. And so I was forced to stop. So all of a sudden everything was taken away and I think it was probably a good pause for me because all I wanted to do was get pregnant again. But I don't know that I was ready for that. From hearing other people's experiences where they didn't have a forced stop, I think it's just talking to your partner, knowing what you're comfortable with and realizing that having a live healthy outcome doesn't necessarily mean it's the only way that you can be okay. I think I hopefully show a little bit of hope for that if someone is in a position where they can't try again right away, or perhaps they're not going to be able to where they're not ready and that's okay too. I think people feel guilty about not being ready and needing time. And I was able to work through things and feel joy and continue on with my life. And then until I was in a healthy and positive situation to where we are ready to try and we are going through that. So I don't know that anyone ever knows a hundred percent if they're ready, but I think it's, it's okay to just honor how you feel. And I think no matter what, it's going to be scary through my two miscarriages, like, Dr. Sekhon said, like, I held my breath so tight that my doctor would say, you have you have to breathe. I haven't even started the exam yet. So you have to be ready for that. And I think the pregnancy after loss support is really important and continually talking to somebody. And I think a therapist is definitely important to talk to someone who knows about this subject matter because I've had both. And I think it's been a lot more beneficial with someone who really understands this and to speak with them about your feelings and cause they might help be able to help you navigate if you are ready because it is stressful. And it's you think it's going to be the only thing that cures you, but it's also, it's, it's really hard. It's hard and it's anxiety producing, but
Rena: Thank you. That was really so great to share and I think probably helpful to so many. I know this topic is heavy and difficult, but I'm so happy that we could get everyone together. I'm hoping this will be really helpful to people. And we'll share all the information after this for Nancy's practice, PLSP, Dr. Sekhon’s info, my info, you know, we're all here and can offer various types of support. Jennifer’s fantastic and so brave. So I like to sort of end things if I say something like this, which is so heavy on an uplifting note, so something positive. So I'd love for us to each go around and say something we're grateful for something positive to leave everyone with after such intense conversations . I don't know if someone wants to volunteer to go first?
Jennifer: I can hop in. I will say that this is a club that nobody wants be a part of, but it's filled with the most supportive women that you will find. I have met some really, really great people through discussing this topic. And I think that's people that I speak to more than friends I've known for years. And I think that's been a really great experience and yeah, I mean, that's really, I think uplifting and my therapist has put me in touch with someone that she thought that I would jive with and I speak to that person via text message every day. And it's funny, we've met each other in person once, but we have such a connection and about infertility and loss, but also other things in life. So this has been something that yes, I would prefer not to have gone through, but it certainly opened me up to people that I wouldn't have met otherwise.
Rena: I love that.
Lucky: I can go next. I feel really grateful to be working in this field. I'm really passionate about women's health and I feel like as a fertility doctor and OB/GYN, you're part of a really special and oftentimes private journey for a patient or a couple. And I think it's just a real privilege and I really feel grateful to not only be in this area, but to be practicing with alongside professionals like you, Rena, and taking a multidisciplinary approach. You know, I'm always bringing up the need for support to my patients and the fact that you were with me at RMA, I'm really grateful for and appreciative of all the support you offer my patients. So I just am really feeling fortunate to work at a place like RMA because I feel like we have a great team and people coming from different walks of life with different skill sets but I think having that support of a clinical psychologist and having you there as one of our mental health specialists as well is just so valuable.
Rena: Thank you. That's so nice. Nancy, do you want to go?
Nancy: Sure. I just kind of reflect back on my own personal experience with IVF which was many, many years ago informed my then professional choices. And I'm kind of so grateful to reproductive technology for what it has afforded not only afforded me and the family that I was able to build, but to the patients that you're all working with. And I also want to, I want to give people hope that there are many different ways to have a family and it can be with a partner. It can be with your family of origin. It can be in so many different capacities, but what's important is to be able to move through this with support and also know that if you do go on to have a subsequent positive outcome, that there nothing from the loss should prevent you from being able to love another baby.
Rena: I love that. I think really important words for people to hear. And Nancy, I didn't know that you'd also had gone through treatment, which gave me chills when you said that because, you know, I'm so blessed in my career to, to connect with people, um, in all aspects of the field. And it's pretty much, I've been working with so many strong women and most people that I meet got into this field because of their personal experience. That's how I got into it was my own personal experience. And so many of the women I meet who are working in the field in some capacity got into it because of their experience. And I think as Lucky said, I also feel so lucky to work with such an amazing team and people that really care so much. And I think I'm so hopeful that everyone lending their voices to topics like this. And just fertility and fertility at large is really going to help change the stigma, break the barriers, make this something that is more talked about, that society has a better understanding of so that there aren't so many people suffering in shame and isolation and silence. And so I'm just so grateful to be connected with such strong women and so impressed, you know, Jennifer coming forward, to be so brave to share her story. So I just am so thankful to all three of you for taking your time and giving it to us. You know, that's a valuable gift. So thank you so much. We'll post everything after this. We're going to release it on the Fertility Forward podcast as well. Any questions you will get the contact info from myself, Nancy and Dr. Sekhon any questions for Jennifer, I guess you could filter through me and thank you everyone who came, I hope this was helpful. And as always feel free to reach out to us with questions. And we just got a message. Someone said, thank you so much. This was very inspiring. And I'm so thank you so much for saying that, because that was really my goal with this. I wanted to do a panel to provide information, but also give people hope and make this not so sad and be inspiring and uplifting. So thank you. Thank you to all of our panelists and our guests. And we're so grateful to everyone and have a wonderful night.
Nancy: Thank you so much.
Jennifer: Thank you.
Lucky: Thanks for having us Rena.
Rena: Bye everyone.
Dara: Thank you so much for listening today. And always remember, practice gratitude. Give a little love to someone else and yourself. And remember, you are not alone. Find us on Instagram @fertility_forward. And if you're looking for more support, visit us at www.rmany.com and tune in next week for more Fertility Forward.