SART Fertility Experts - Recurrent Pregnancy Loss

Candace discusses her experience with infertility, IVF, multiple pregnancy losses and ultimately a successful delivery with Dr. Julia Woodward, a reproductive psychologist. Hear their strategies for coping with the grief, anger and anxiety that many patients endure.

The information and opinions expressed in this podcast do not necessarily reflect those of ASRM and SART. These podcasts are provided as a source of general information and are not a substitute for consultation with a physician. Welcome to SART Fertility Experts, a podcast that brings you discussions on important topics for people trying to build a family.

Our experts are members of SART, the Society for Assisted Reproductive Technology, an organization dedicated to ensuring you receive quality fertility care. Hello, I'm Dr. Julia Woodward, a clinical psychologist, and I've served as the Director of the Patient Support Program at the Duke Fertility Center for over 15 years. As the representative of the Mental Health Professional Group of the American Society for Reproductive Medicine, I was really excited when SART asked me to record this podcast, Surviving Pregnancy Loss After IVF, A Journey of Grief and Healing.

As we were developing ideas for this podcast, I knew immediately that I wanted to interview Candace. I first got to meet Candace in 2018 when she joined the Pregnancy Loss Support Group that I lead here at Duke, and then later on we had a chance to work together individually. As you're going to hear today, Candace's family building journey has involved some really painful chapters that she never imagined.

And at the same time, she demonstrates a kind of resilience, flexibility, and wisdom that I thought would be really powerful for others to hear, especially those still struggling to process their experiences. So I just want to say again, Candace, how much I appreciate your willingness to join me today and share your journey. Thank you, Dr. Woodward.

I'm very grateful to be here. So start out by telling us a little bit about when you first started trying to build your family and some of the initial struggles that you were facing. Yeah, so my husband and I decided to start trying to build our family in September of 2015.

Shortly after I turned 30, I felt like that was the right age for us. And after about a year of no positive pregnancy results, we decided it was time to reach out to a fertility specialist to see if they could help us identify why we were not getting pregnant on our own. That first year that we were working with a fertility specialist, we went through several tests and through three unsuccessful IUIs.

And after our third unsuccessful IUI, we decided we were ready to pursue IVF. So in October of 2017, after having our first IVF cycle, we transferred our first of two embryos that we had as a result of that IVF cycle. From that transfer, I did get pregnant and we were so elated and grateful to finally be pregnant.

And even though we were over the moon excited about being pregnant, I have been always acutely aware of how early, especially early in pregnancy, how loss is miscarriage and stillbirth is something that happens. I have a lot of family and friends that have experienced loss. And so I went into that knowing that it was a possibility, but of course, holding on to hope that everything would work out well.

Unfortunately, when we went into our six week ultrasound, we found out that the baby did not have a heartbeat. We went in again at our seven week ultrasound and also were told that the baby still did not have a heartbeat and that I would miscarry. It was devastating to hear.

I think even knowing that there's that possibility for miscarriage, it never fully prepares you for that news. And so at that point, after I miscarried, it was just, I felt very empty at that point. It was a very tough time.

And very few of our family and friends knew what we were going through as well. And we had kept our IVF and fertility journey pretty close to our chest at that point. But we did start to open up later once that happened.

Yeah, I just want to highlight that I hear that so commonly from patients that they aren't talking about their fertility journey with anyone else or keeping it often very private between them and their partner if they have a partner. And that often helps them feel like they're sort of protecting their privacy and then leaves them feeling really vulnerable and unsupported when they need support from other people if something goes wrong. Exactly.

I think it was at that point that I realized that I couldn't go through that process alone. And I really started to reach out to family and friends and share our story. And that was incredibly helpful for us.

Yeah, I think that's so powerful. So tell us then sort of what the next chapter brought after this loss. So after our miscarriage, which we did name, I always felt that we were having a girl with my first pregnancy.

So we named her Lily. And so after we lost Lily, we pursued another transfer in January of 2018. And that's when I got pregnant with my son Graham.

And the pregnancy with Graham went was going very well. And I was, again, we were just so thankful to be pregnant and to have that opportunity again to become parents. And at our 20 week ultrasound, we were told that there were some concerns that came up from his anatomy scan.

However, that over time it could resolve. And so we did some further genetic testing just to see if anything could be linked to what they saw on the anatomy scan. But everything came back positive.

So then at 24 weeks, the concerns that they had on our anatomy scan were no longer there. And so we felt we were out of the woods and felt and hoped that our baby was healthy. At 27 weeks, I noticed that I wasn't feeling him move.

And I went into the hospital and they confirmed that he didn't have a heartbeat. And that was the worst day of my life. And I, again, nothing will prepare you for that kind of news.

Later that week, we delivered him. And it was simultaneously the most special day of my life and also the worst day of my life. It was, I'm just so glad that I was able to meet and hold our son and have that brief time with him.

But it was incredibly hard. I remember talking to about what a holy and sacred time that felt like and how proud you were to be his mother, like how beautiful he was and that sort of maternal bond that you felt with him so strongly. And simultaneously just being hit by incredible waves of heartbreak and grief and loss because he wasn't going to be able to grow up in the same way.

Yeah, it's a strange feeling to have such strong feelings of love and being so proud to have your child there with you. And it truly did feel like I delivered a child just as anyone else does in a traditional sense, a living child. And, but then it was coupled with that immense grief and knowing that I had a very brief time with him and that as the minutes went by, it was, I knew that there was a time where I had to say goodbye and, and leaving the hospital was one of the hardest things I've ever had to do.

Yeah, these, these moments are, are so they're, they're devastating and they're so confusing because they involve such a strong rush of both positive and negative emotions. It's like such a whirlwind. Okay.

So tell us what came next in this season then of healing and sort of preparing for additional treatment. So after Graham died, I spent many months grieving. I still grieve the loss of Graham, but I was deep in the trenches of grief at that time.

And eventually we felt ready to pursue another IVF cycle. And from that IVF cycle, we had two embryos and we transferred one of those embryos and we did get pregnant. And we now have our son, our living son Harrison from that transfer.

And we yeah, we were again, very thankful for, for that opportunity and thankful that everything went well in that pregnancy. But it's, it's been a journey to get here. And I yeah, I, I think too, it's just it's been, it's been interesting to mother children that are not with me and also mother, a living child.

I love that, that description that you continue to mother Lily and Graham, that they are, will always be a part of your life. And that, that relationship is enduring, even though they're not physically with you and that kind of contrast between mothering them and mothering your living child. That's really interesting.

So sort of bring us from Harrison's birth to the moment that we're, that we're in now. Tell us, just kind of round out the story for where we are now. Yeah.

So after I delivered Harrison, I did have a postpartum complication, which was very scary and life-threatening, but it was something I went through and thankfully everything turned out all right. And since then I've been enjoying motherhood and enjoying raising our son. He is now 18 months and we are also recently pregnant with our, well, not recently pregnant, but we are pregnant with our fourth child and we are due next month.

And this pregnancy was different than my other experiences before. We were very fortunate to get pregnant naturally. And it was an unexpected surprise.

We were very grateful for that. And so we'll be just looking forward to having another, another child that we can bring into this world. Yeah.

When I reached out to you about the possibility of recording this podcast with me, that was the moment that I got to learn about this pregnancy and the fact that it was a natural conception. And so what I thought was so important about that part of your story is that you experienced lots of unwanted surprises along the way in earlier chapters of family building, and that this was a really lovely and beautiful surprise. And that that's so much a part of the family building journey for so many patients.

Just how unpredictable it is, how many different twists and turns there can be along the way. So this is an awesome twist and turn. And another reason I was so grateful that you were willing to do this just right before your next delivery.

So thank you for that. So let's turn a little bit to kind of interacting with your loved ones along the way as you're having these losses. How did your loved ones react? How did family and friends react? And what were some of the most difficult or painful things folks said, as well as some of the best ways that people supported you? Yeah, so after our miscarriage, since very few family and friends knew about that pregnancy, we didn't have quite the same support as we did after Graham died.

But those that did know were incredibly supportive and loving and caring. That's something that we have found that we're just incredibly blessed to have is just a group of family, friends, colleagues that have just been so supportive through the loss of our son and in Lily as well. And so some of the things that we found extremely helpful from family and friends through that process was just having someone there to truly listen to and acknowledge what you've gone through.

I had so many conversations with family and friends where they didn't say a word and I just spoke at length ad nauseum about how I was feeling and what I was going through and how much I missed my son. And they would just listen and they would just reiterate what I was feeling. Repeat to me what I was feeling or trying to acknowledge that.

And it was just helpful because I felt like they were really acknowledging the pain that I was going through. And I know that for someone that hasn't gone through that experience before, it can be very hard to try to relate in a way. And so I think that by just acknowledging the other person, how they're feeling, that can do so much more than trying to relate or compare your situation to another person's situation.

What I hear so commonly is just allowing the person to share that they are suffering without trying to make it better, without trying to say there's a silver lining, without trying to say you understand fully. But just what you're saying, just make space for this. Just listen.

They didn't say a word, but they almost didn't need to say a word because they allowed you to say your words. Exactly, exactly. And we also felt that other things that were said that we found that were incredibly helpful were asking about our son.

So acknowledging that he lived and he died and asking small questions like what color hair did he have? You know, who do you think he looked like? Do you think he looked more like you or your husband? And what was the meaning behind his name? All of the things that you would normally ask someone when they have a living child or have delivered a living child, asking those same questions. Because for me, it was the same. I felt that even though my son was not living, he was living at some point and I delivered him and he was there.

And so it just felt special when others ask those types of questions because I felt like they truly acknowledged his presence and that he was here. Yeah. Acknowledging that he was real and his life was important.

Yeah. I think that's just critically important type of validation to share for folks. So can you reflect on some of the things that you found to be most useful in getting through these very difficult times, strategies that you used to cope with your grief? Yeah.

So I found that my strategy has really changed through my fertility experience. So in the beginning, when I was going through fertility treatments, I really focused on things like exercise, learning more about fertility through podcasts, the literature that's out there, trying to optimize my health in all ways, taking supplements, eating all organic foods, all of those things. And I'm sure there's a lot of people listening who can relate to that.

Yes. And for me, it felt very natural because it was something tangible that I could do. I tend to be a very, I don't know, data oriented person.

And so I guess I just felt like, okay, if I do X, Y, Z, this will happen. And so I did that throughout my fertility treatments and although we had success through our IVF transfers, we suffered several losses and that type of loss, it just makes you question everything and, or it made me question everything. And I think that my strategies for coping with the grief at that time changed.

I felt like I could no longer rely on the things that I did before to help me with the grief because I didn't trust that they would work. And so after loss, I found myself reaching out and talking more with close family and friends, sharing our story, I'm connecting with groups of people who had shared experiences. So I'm reaching out to miscarriage and stillbirth support groups.

I'm speaking with you or speaking more generally with a psychologist or a therapist, someone who's trained in that field, I think is so helpful because they really have that knowledge base and perspective and can help you navigate that season in your life. And other small things that I did just at home were things like meditation, taking time to just reflect on what was going on instead of pushing it to the side and moving forward by taking more actionable steps on things. I think that by meditating, I was able to just acknowledge what I've been going through and how I feel.

Other small things that I did were baking. I love to bake. And so it was a great outlet for me and being out in nature.

So going on a lot of walks, doing more introspective activities that allowed me to process what I was going through journaling. And then even some little things like using essential oils. I felt like those were helpful because just like the sense helped me.

I can't explain. It's very grounding. And so those are some of the things that I found most helpful through the grieving process after my losses, which was very different than what my coping mechanisms were when I was going through fertility treatments.

Yeah, I think I really watched you move from using strategies that involved kind of data gathering and control into strategies that involved more acceptance, emotional expression, reflection, self-nurturance. Some of those kinds of tools were really beneficial and useful as you were carrying that really heavy load. I think you said when you were deep in this trench of grief.

Okay. So tell us a little bit more. You are someone who you're very social media savvy, and you would come in talking a lot about the communities of support that you had found somewhere in person.

You did come to the pregnancy law support group at Duke in person. And I know that there was another group that you found locally that you met with in person, and you also had lots of sort of online communities. So say a little bit more about how you found those communities and what you gained from those connections.

Yeah. So after Graham died, I was at the hospital and they had given me a packet of resources to reach out to for all different stages of grief and things that you would find helpful during that time. And one of the things that was in that packet was a list of support groups local to our area that were for families that had lost a child.

And so I reached out to one of those support groups. It was one that met monthly and we went to a church and met with a group of other families that had been through similar losses and just shared our story. And through that support group, I was able to connect with families that had either been through something similar that we had, or we just had a connection.

And at that point, we would start seeing each other hanging out outside of the support group and doing things together like going on memorial walks or just getting together for lunch to talk about what we were feeling and what we were going through. And that was immensely helpful through that, especially the very early months after we lost Graham. It's just really helpful to connect with someone who's been through a similar situation because you don't have to, I didn't feel that I needed to share or explain as much as I would to someone who hasn't been through that experience.

They innately knew what I was going through because they themselves had gone through something very similar. And so we immediately had that connection that you wouldn't normally have with someone that you had just met. And other areas that I found communities were through Instagram.

So there's a lot of infertility Instagram accounts that I had followed previously, and you see their journey and their family building process and what they've gone through. And so that's something that just, even if you're not with a support group that day or seeing someone from your support group, you're able to go on to Instagram and just see what someone else is going through at that time, if that's something that you would find helpful in that moment to try to connect. So it's a different way of connecting with someone, but I found it to be helpful.

I remember you saying that these experiences of connecting with other women and families who have lost children, whose children have died, made you just feel so much less alone. Because it was like everybody else in your social network had these more traditional experiences and were seemingly so easily pregnant and having such uncomplicated pregnancies. And so being with other people who were like you, just like you, normal, professional women, but whose hearts have been broken by these kinds of deaths, it just made you feel so much less isolated.

Yeah, exactly. I think it's something that you don't hear about often. Even after Graham died, I had so many colleagues and friends that came to me to share with me their experiences that I had no idea that they had gone through.

And so I think that it's something that it's hard to talk about, but it's very healing for someone who is going through it, not only in the early stages, but even years afterwards. It's just, I wish it was something that was talked about more openly in general, I think as a society, we keep those types of things closer to the chest. And so that's something that I myself have been working on because I tend to be, you know, a very, I keep a lot of things to myself.

I am not a very open person, at least with personal matters. And so that's, but that's something that I've learned through this process, but it's just so helpful, not only for myself, but for others to share your story and to help someone else through through that time. Yeah, I think we're beginning to see slow evolution in our culture to talk more openly about these kinds of losses.

And I think the group of patients that I see struggle the most are those who are trying to process their pregnancy loss or the death of their child just by themselves or with their partner. Those people's experiences tend to be the heaviest and their recovery tends to be a little bit slower. And so finding some outlet, whether it's in person or online, you know, through journaling, like lots of different ways, but being able to kind of share more and connect with other people, I think is a really powerful intervention and strategy.

Okay. So Candace, say a little bit more about how you and your husband honor the lives of Lily and Graham. You mentioned a memorial walk before, but I know there's been some really special things that you guys have done.

Yeah, we try to honor them in any way that we can. Some of the things that we've done, we have a local park that we would go to quite often, and I would run around that park when I was going through my fertility treatments. I would walk around that park when I was pregnant.

And so it was very special to us. And so what we did was we planted two trees in that park in memory of Lily and Graham. And most recently we moved and so our house is now located just about a block away from the park, which I'm so thankful for because we can go there and visit more often than we could before.

And so we'll go and visit those trees many times during, you know, on Mother's Day or Father's Day or just any day really. But it's just really nice to have a place for them. And other things that we do are each year we celebrate Graham's birthday by going to the beach.

We go to the same beach house, the same location, and we celebrate his birthday. We have a birthday cake scented candle that I got from, it's called Laurel Box. It's like they make these very sweet curated boxes for families that have gone through losses.

And it's just very special. And so every year we'll light that candle and sing happy birthday to him, which is very tough, but it's something that we like to do for him every year. We'll also do memorial walks with the Tears Foundation is specifically the memorial walk that we do, but there are many others.

We'll also talk about them any opportunity that we have. So I love when others ask about him and I get the opportunity to talk about him because it's not often that I do. And when our son Harrison was born, we gave him the middle name of Graham to honor his brother.

And I also wear a ring with Graham's birthstone and I have other jewelry to honor Graham and Lily as well. So I think having those pieces and just trying to incorporate them in any way that we can throughout our daily life has been really helpful because they're part of our family. They are our family.

And I always just want to make space for that wherever we can. Yeah. I loved all of those very sort of tangible reminders and those those experiences that you've woven into your family life that really continue to honor the fact that these children are part of your family.

And I thought those ideas would be really helpful for others to hear about as well. So as we're sort of winding down in our time here, and now that you are sort of further along the pathway and parenting a living child and pregnant again, do you have any kind of reflections on your fertility journey and your losses along the way? Yeah. So, you know, I think it's when I think back on our fertility journey, it's still very painful to think about what we had to go through to become parents to a living child.

And I know that our family will never feel complete because Graham and Lily are not with us. And so there is a big part of my life or a big part of my heart that's missing because of that. And I remember after Graham died, I had a close friend and colleague of mine come to me and and tell me that grief, she compared grief to waves in the ocean.

And she said, you know, at first you'll feel like you're drowning. But then over time, the waves will come by less and less, and you'll be able to breathe in between the waves. And they'll never fully go away.

But you'll be able to learn how to live in between the waves. And although I'm only three years out from the day that Graham died, I have found this to be true, that I will always carry the grief of our experiences and losing Lily and Graham with me, which at times can feel overwhelming. Thinking that I'll have that, I'll be carrying that for the rest of my life.

But it's also something that I don't ever want to lose, because it, it feels like if I lose that I would lose another piece of them. But also, the silver lining to that grief is that I realized that grief comes from an immense amount of love. And I wouldn't be feeling this way if I didn't have the amazing opportunity to feel that kind of love.

And even though I wish with like every fiber of my being that Lily and Graham are here today, I'm also incredibly grateful for the love that I have for them. And the love that they showed me is all around us. Because it's not just the love that I have for them.

It was that going through those experiences and, and, and having the love and support of others around us showed us just how, how incredibly blessed we are to have friends and family that would support us through what we've been through. And I think ultimately, at the end of the day, that's what life is all about, is those connections that you form with others, whether they be family or friends or, you know, someone that you just met on the street. It, it just has given me a whole nother appreciation for how I live my life and what I find to be important and what I prioritize.

And I, I'm just very grateful for that. I'm grateful that I have been able to experience that kind of love. Oh, I'm so glad I asked you that question.

That was a beautiful response. And it's exactly the kind of wisdom that always characterized our work together. I think that your ability to sort of take this very intense pain and, and use it to inform your whole view of your life, your whole perspective on what's important and really what's at the center of it all being our connections to other people and that, that sense of being loved and loving others.

I think that is just so powerful. So I just want to say thank you so much for your time, for sharing your wisdom. I am honored to have been able to work with you over these years, and I cannot wait to see the next chapter as you welcome your daughter into the world next month.

So thanks again, Candace. Thank you for having me. Thank you for listening to SART Fertility Experts, your resource for information on IVF.

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