Episode 3: Coping with the Unexpected

[MUSIC] Hi, and welcome to the Family Planning for All Podcast. My name is Dr. Brian Levine, and I'm a practicing reproductive endocrinology and fertility specialist in New York City. On this podcast, my guest and I will be sharing our knowledge and personal experiences in the hopes that anyone on their fertility journey may find it helpful and empowering. This podcast is sponsored by EMD Serono, where not promoting or discussing any specific products or medicines, and this content should not be taken as medical advice. You should always consult your own healthcare providers with many questions or concerns. On this series, we'll be having lots of open and honest conversations with a wide range of fertility specialists and patients that have gone through the IVF process. Patients that have worked with a surrogate anory donor, and of course, women who've chosen to protect or preserve their fertility, either through egg or embryo, cryopreservation. This episode is a two-part episode we're calling coping with the unexpected. The Family Planning journey can come with many twists, turns, and challenges that people may not see coming, figuring out how to navigate and overcome them is essential to getting through it all. In the first part of this episode, we'll be talking with Jennifer, a wonderful, strong woman who had to work through a lot of emotional and physical challenges to start building her family. In the second part, we'll be talking with my friend Dr. Jessica Reineck, an amazing fertility specialist who has helped many patients navigate rough roads to parenthood. I'm excited and grateful that they both have agreed to share their experiences with us. Welcome once again to Family Planning for All, now let's dive in. Today we're talking to Jennifer, who's a patient who's actually had to grapple with unexpected. First and foremost, thank you for being here for today. Thank you for having me. And second, tell me your story, like tell me everything. I would love to know how do you end up here today, and what is your story? Absolutely. I'll start where I guess most couples start. My husband and I started trying to conceive naturally. Took about a year and a half of us trying naturally before we decided to seek medical help. And then we did some research online to find the right place. I spent a few days doing that to make sure I understood where I was going and all the options available. And we went and met with a doctor and went through the basic tests that we had to go through to find out where there might be some sort of an issue or if there was an issue. So I went through all of that and it turned out that I had a very low account. It was very, very low especially for my age. But there was a small chance that I would be able to conceive through IVF. So we went ahead and tried the first cycle after securing financing. We started going through doing the medications and it's about a two or three week process that you actually go and start taking the medications and then start trying to see if your eggs are going to be able to be harvested. And then you go in and have them harvested. And the first time I did it on that first cycle there were we were able to get seven eggs. And typically I think it's usually above 10, maybe 10 to 12 is the norm, I think. But I remember. And so we were already a little low there. And then out of those seven only three were viable and only one fertilized. But we went ahead with the implantation. And we were, my husband and I were very excited. It was seemed like the first cycle was going to turn out fine. We were only going to have to do it once. But a week after the implantation, the numbers just weren't looking well. And my doctor said that it's a 50-fidget chance that it would work out. And throughout the whole process you're always told to keep your spirits up. Always keep your hopes going. And otherwise that might impact the process and how your body reacts and so on. So it's very hard to keep hoping and hoping when you're told that it's very possible. It's not going to work out. So that was difficult to try to keep myself going. Hoping that it was going to work out. But it actually ended up not working out. And I had a miscarriage. And that was difficult. And I still wanted to go ahead. It was very important to me to have a child. Since I was young, I kind of remember if I was probably born wanting a kid, I always wanted to have a child. So I never thought I would have any issues with it. But this was all very, very surprising. And after that, I went ahead and did a second IVF cycle. It was been a night. And throughout the first week or so of the medication, we checked to see how it was working and my body was not responding like it did the first time. And basically at that point, my body wasn't giving us any eggs. And my doctor told me that there was no chance of IVF working for us. And the only way that we would ever conceive is if I decided to go with an egg donor or serigacy or something along those lines. And that was very difficult for me. That was very, very difficult for me because you always think that you're going to have your biological child. You know that has your traits and looks like you and you can make them be a better you. So it was very hard for me to come to terms with that. In fact, it took me two years to finally come to terms with that. And a lot of talking and a lot of therapy and a lot of soul searching. And I just got to the point where I still wanted a child so badly that even though it wasn't going to be ideal. In fact, it was the last way in the world that I ever wanted to have a child. It was the only option. It was still a viable option. And I couldn't just walk away from something that could still work. So we went ahead and decided to do that. We went back to my doctor, let him know that we were going to pursue that path. And so we started getting on all the going down through the process of that. And there are multiple ways that you can find an egg donor multiple ways. But we decided to go with a bank. There's a donor bank. There's multiple donor banks throughout the country. You're able to go onto their site and see what they have available and so on and so forth. And so I have researched again and I found the one that I like. I don't know if this is really important, but the only real important thing for me was that the donor had red hair because I wanted to have some red hair in there. And there's only five, only five donors with red hair out of a thousand or something like that. But I was able to find a donor and we went ahead and started that process as well. And we did the first cycle and just it didn't work out just because of timing of fertilization. I didn't have it all put together correctly, but it wasn't anything that didn't work with my body or my husband's body or anything like that. But the second fertilization went well, really well. We ended up with three perfect glass of sites and we went ahead and implanted one. And I became pregnant and three months later after the first trimester, I was, they told me I was good to go and after that, you know, first section of continuing to worry is whether or not it's going to work out. So finally got past the first trimester and was able to somewhat lessen the worry of, you know, making sure that it was going to go smoothly. But I did, the rest of my pregnancy went pretty smoothly. I had to be on bed rest towards the end just because I had a situation going on, but it was a normal pregnancy thing. But yeah, my hope my son was born at 557 in the morning, October 30, 2020. Wow. So you have experienced the lows, it sounds like some of the darkest lows of the process and come out the other side at probably the highest moment, which is getting to change your name from Jennifer to mom, which is the story that everyone wants to hear as possible. But it sounds like a longer way, you went through a lot, you went through a lot of struggles. How do you do it? How do you actually get through that when you feel like everyone around you's getting pregnant? And all you want is this simple thing that everyone else gets to experience. How'd you do it? Hmm. I thought and thought and thought a lot. I spent a lot of time walking and sitting on the beach and writing. I was very angry, very angry for that specific reason that you said, you know, so it seemed seemingly people can easily get pregnant. You know, that's the way it looks, right? But, and it's frustrating when people have no problem whatsoever. They have no clue that it can be a struggle. And, and so it's, it's, it caused, it made me very angry. I was very angry about that. And then why do I have to struggle when others don't type of thing? That was hard. That was the hardest. One of the harder parts to get over just being angry that I had to even go through into any of this. But the most thing, the best thing that helped was I found a psychiatrist that was, that specialized in infertility support. And with her help and with my husband and some family members and my, my friend support. So again, a lot of talking, just literally months and months of talking and lots of crying, just allowing myself to cry really and just allowing myself to, to feel it and not act like it wasn't happening. I think that was helpful because I've, I continue to push it away then it was just going to get worse. So, and that's also something that my therapist is helping with as well. So I wouldn't have been able to do it without support. I would not have been able to do it. I know if I was only by myself, it would have been, I would have had a much harder time mentally and I don't know if I would have been able to move forward. But with that support, I was able to, to find the light. What scared you? Ah, what didn't scare me. All of it, what scared me was, you know, I guess the things that I've heard before or seen on TV, you know, the whole process of having to take the shots and, you know, all the medication and all the stress and the worry and all of that. And then also going through, just actually just going through that and then whether or not it was going to work. That, that was the biggest thing. You're going to go through all of this and it still may not even work. You have no idea whether or not it's going to work and you're just taking a big leap of faith. And that was, that was very scary. So I talked to patients all the time about the three costs of fertility treatments. There's the obvious one, the financial costs. Sometimes for some patients, this is the largest single allotment of cash they've ever had. And the physical cost, it hurts, it's uncomfortable, shots are not pleasant. The process is invasive. And then there's the third, the emotional cost. It feels unfair. It feels like something you were, you said it best. You were born ready to be a mom. And then all of a sudden your vision has been changed of what that mom definition looks like and how you're going to get there. Talk to me through each cost. So the first one, financial. What was going through your mind when your doctor said IVF is the way that we need to proceed? Hello, start of wondering where we were going to get the money. Yeah, we had some savings and so on and so forth. So we had a starting point, but definitely wasn't going to last all the way through. So we had to figure that out. And then we were in a position where and there's and I was glad to find out that there are actually companies, finance companies specifically for fertility. So that's one great thing about that as far as a little bit of a safety net. But yeah, so and there were other part parts of that program that made it very accessible and easy to be able to do. But it was it was expensive and you know, it was obviously it was alone. So we had to pay on it and that was a toll, you know, on our normal bank finances. We figured it out. It was hard and I can see how and I have other friends that, you know, there's no way that they're going to be able to get the money, you know, and that's just that's not great. We also received a grant for our fertility to support our fertility efforts and that obviously it made it very a lot more accessible for us. That I actually think although I'm not saying it wasn't a huge cost, it was, but comparatively that was the lower of the seas. And talk about the physical aspect of trying. What did it feel like? Well, of course, obviously the medications, no fun. They hurt and that was, I think twice a day, once in the morning and once in the evening for part of it and then you kind of switch it around in little and it's not just the shots. There's also other medications that you have to take along with that depending on the part of the process that you're in. Because the medication, of course, impacted me, my emotions, my moods, you know, so on and so forth. I was already in a heightened situation because of what we were going through, but then also that was, I feel like the medication, you know, up that up by a thousand percent basically and just made me feel very intense and very back and forth emotionally. I had major mood swings, you know, and I got a lot more scared, I think. And I don't know if it was just if that was an impact of the medication or just going through the process of getting shots or whatever, but it made it more real and it made the possibility that it wouldn't work more real as well. So yeah, it was a struggle and also, I mean, just physically, I was just kind of a lot in pain and like uncomfortable, very uncomfortable from, you know, during the process and during that. Just my body would just feel kind of wacky. Who is your source of strength throughout your process? As hard as it is to say this and I'm realizing as I'm saying it, I think it was me. I love that. Thanks. I had support. My husband was very, very supportive and I, family and friends of course, but throughout my whole entire life, I always, if there's something I want, I'm going to get it, you know, and so I've always been the one to push myself and even though I continuously tell myself, I'm not strong. I don't know how I'm doing this, but I somehow do it. So I just kept pushing myself and you know, really it was just this intense feeling inside me. I couldn't, I couldn't make it go away. I had to do something. So take us through getting that phone call that you were pregnant after having your embryo transfer. Where were you? What was going on? Tell us everything because I imagine that day is a day that you'll never forget and probably next to hearing your baby cry, hearing your son cry, that was probably the second happiest day in your life. Tell us about that. I actually missed the call. My doctor left me a voicemail that I still have on my phone. I was working from home, you know, and I had, I think I was on a phone call of a conference call for work or something. And of course I missed my phone ringing. And then I got off the conference call for work and checked my voicemail and it was my doctor and he left me this amazing message. You know, and he said, of course he said, I'm so sorry I missed you and I can't tell you in person, but you are pregnant. And it was, it was a very, very, it was like, it's, I've always tried to find the right words to express that feeling, but it's so hard. And it was my whole body filled up with joy, you know, and I was at home just sitting in my office at home and by myself and I just, you see this voicemail and just, all my dreams finally came true. It felt like that, you know, like finally something that I had been trying to get done and wished about and dreamt about was like really actually happening and it looked good. And you've been pregnant from your first IVF cycle. So what does it feel like to be told this time that you're pregnant? What were you thinking? Oh goodness. Again, at first I was extremely late and I, and very quickly I was scared. Having gone through a miscarriage before, of course, I was afraid that something was going to happen that would cause that to occur again. And all the different things that could happen during a pregnancy, especially during the first trimester. So that elation quickly turned into anxiety as far as like, am I going to get through the first trimester? And is everything going to go okay? Pass that? You know, it's just, isn't going to go okay. And I was worried. I was anxious, pretty much my whole pregnancy, even though after the first trimester, everything was looking fine and pretty much everything was, it was until the end, pretty very easy pregnancy. I was still really worried that something was going to happen because I had experienced, you know, lost force. So, and I'd met and talked to many people that had gotten to six or seven months and still lost their child. Help us understand what it felt like when you picked that donor. What was that moment like? Hmm. It was, it was too faced. I was very glad that I found someone that resembled me, you know, and had a lot of similar characteristics and actually similar, um, heritage and so on. But it was also like seeing the mom of my son, a ventral son, you know, a ventral kid. So it was very, I had to constantly talk to myself and keep telling myself that she's not the mom. She's not the mom. She's not a, it's a different type of biological situation, um, but I had to talk to myself a lot through that. But I really, I was very excited about the, the one that I chose again because she had a lot of similar characteristics. And, um, I just, you know, it was interesting. I felt, I just felt like it was, it just felt organically right, you know, there's sometimes in our lives when he actually gets to feel something naturally, organically, just come together. And I felt like it just, it was just kind of that like, ah, we're supposed to be together type of thing. But, um, but it was, I still to this day, I still struggle thinking, you know, what if she thinks of him as her son or something along those lines. So one of my first patients of my career, I remember her vividly, like I will never forget it. We had to pursue donor egg for her as well. And she said something super powerful to me once, which was, I thought about the words donor egg every single day since you said it. And then I forgot them when my child was born. Tell me about that. Did that something you've experienced? Absolutely. Before my son was even born, I started to feel a connection and, um, now I actually also learned about epigenetics, where you're my DNA or my, you know, genetics would influence his as well. So, I, uh, that connection started really soon. And, which was surprising, actually, I thought it was going to, I thought I was going to have a hard time even when I was pregnant. But it was almost immediately that I felt a connection and that was like, what? And donor. I don't know what you're talking about. This is my kid. I, I'm pregnant and I'm having a kid, you know. It was a little weird to say like, I got pregnant because, yeah, I got pregnant, but it was like a planned process, a medical procedure type of thing. So it's different than when you think naturally got pregnant. So that felt a little weird, um, but other than that, like I did, I forgot that there's an egg donor for a while. It's always in the back of my head, of course. But, yeah, he was, I was pregnant and that was my baby and that was that and that's how it's been. So the strength that you have is incredible. And the fact that you stuck with it is commendable because a lot of patients give up. And what's amazing about your story is that you're so brutally honest that you had to fight yourself at points to get what you wanted. But if we had a time machine and you can go backwards the day one in your doctor's office when they told you that unthinkable truth that the egg count was low and the risks were high and the chances of success were low. What would you tell Jennifer back then? What do you know today? Foo. That's a good question. Um, I think you, I'm for saying I'm strong. I don't feel like it. So it's hard to say I would go back and say you have the strength. Obviously somehow I found it. So I would think that I would have to say that. You know, you do obviously you have the strength. You're going to get through it and all those things that you've heard or people say all the stigma around, you know, infertility, none of that matters. Just forget all about all that. Because I did think about it and I still do think about all of that sometimes. But um, if I could have told myself, none of that's real, you know, none of that actually matters then I think that would have really helped. So this amazing five year old son that you have now, tell us about him. He's awesome. Um, his name is RJ Robert Jr. but we call him RJ. He just turned five. He's just started TK as well. He's very outgoing, very social. Um, you know, whenever we go anywhere, he's talking to people. He says hi to people. When we have, you know, family reunions, he'll grab people and bring them out onto the dance floor to try to get people to dance. When nobody else is dancing, um, he's always, he's always smiling. He loves transformers. He loves science. He'll sit there and watch a documentary about the planets or black holes and stuff like that. It's crazy. I learned about planets because of him. He's, uh, you know, as he's very physical and likes to run around and all that stuff like a, any five year old boy. Um, actually he has a hemophilia. So he, there's some limitations to that. So, um, we have to keep kind of keep him from doing some things, but he loves. If he could, he'd jump off a cliff and so on and so forth. He's very brave, not afraid of anything and, um, very smart. He really is very smart. He tries to hide it, but he's smart. I don't know. I don't know. I don't know. Kind of basically. I've learned through a number of sources that. It's best to tell children early of their origin stories. Best that way because it just becomes part of their story. You know, and then hiding things and telling them later in life causes other issues. So, um, I've just made it a part of the conversation. I've, his birth story includes the fact that mommy didn't have a piece that she needed. And somebody else helped her and get a piece that she needed. And then also we have, um, you know, books that we read. There's a lot of books out there. And, um, like, you know, nighttime books, perfect for him in our situation. And I use, I do that a lot. And he likes hearing his birth story. I tell him a lot. And what I love about your story, which is really his story is that. He gets to find out that there are these two people, his parents, who fought so hard to bring him here against every odd possible. And he's here because no one gave up. Which is the most incredible story. As this podcast talks to potential parents or people who are thinking about having a kid in the future. Or maybe people who are supporting people on their own infertility journeys. Your story is so important for them to hear. Because people should know that if you want this, you can have this. Can't tell you how you're going to get there. But you're living proof and so is RJ that if you don't give up, there's a family to be had. So thank you so much for your time today. And thank you for sharing your story. Dr. Jessica Reineck. It's so good to see you again. And thank you for joining us for this episode. Where we're going to really go wide and deep into the emotional exposure and the emotional experience of what patients have when they go through their fertility journeys. Let's start the conversation with how you. start the conversation. How do you talk to patients about the emotional weight of going through fertility treatment? I think that one of the most important things that people need to be ready for is kind of how all consuming this process can be and also the waiting. Because I think that's probably the hardest part of this process is the waiting. You've already been waiting six months to a year or however long you've been trying before getting to a fertility doctor. You see a fertility doctor and you're ready to do treatment but they're still waiting to be had after that. So the testing and different treatment options. And I think that a big and important piece of my job is kind of setting expectations because I think that the most, the people that have the hardest time and the most difficult thing is when their expectations don't line up with my expectations. And so I find it really, really important from an emotional and mental health support standpoint to make sure we have a conversation about all of that upfront about how long we think the journey is going to take understanding that that can change and things happen unexpectedly. But you know, what I think for them might be the process and then also kind of frequently checking in with them. But making sure they know upfront that there is still more waiting and we're actively working towards that goal with or without the bumps that come with it and making sure their expectations are set at each point. How do you help patients understand the emotional and psychological challenges that they're going to face through their fertility treatments? Absolutely. I think I see it in both ways probably as a as a fertility provider. You know, I think that a lot of people come and expect fertility hormones and drugs to make them kind of very emotional and you know, have a lot of mood swings and some people don't experience that. But I always say like this is an emotional process building your family, you know, having a baby is such an exciting but also kind of overwhelming part of your life. And you can be really happy and joyful at some outcomes. But there can also be profound sense of loss. And I think that you're sometimes can be surprised at what you experience in a negative way. You know, little things can sometimes be feel more impactful to you. And I've seen the range of it, you know, extreme joy, extreme sadness, profound loss, exhilaration, and excitement, rage and anger at the fact that you're here. And so there is really no wrong emotional experience for people. When patients go through fertility treatments, more often than not, they're successful. But that doesn't mean that everyone is successful. How do you define success as a physician of an IVF cycle or a transfer outcome? And how do you handle one in their not successful? That's a really tough question. You know, I think that there is the measurable successful outcome of walking away with a baby or walking away with the family that you want to have ultimately. And that as you said, is not what everybody gets to have. And so I think in that scenario, success is going to be the patient walking away, knowing that they did everything that they could, knowing that they gave it their all, knowing that it's not them that is a failure, but the treatment and the process and the medicine, because I think that that is going to color how they look back on things the rest of their lives. You know, I really want to make sure that they felt they did every cycle they could. They felt they did every intervention that they could. So that down the road, whether they have a baby or not, you know, they have closure around it and they feel like they gave it their best because let's double click on the opportunity to work with collaborative care providers. Who is health there from both professional and I'd say even power professional resources and communities to help our patients when they're struggling. There are many, many resources right now. And so there are psychiatric physicians that focus and provide care specifically around fertility and infertility and grief and loss in this field. There's also psychologists and other counselors that can help kind of support people through this process. Social workers are amazing part of our field of medicine, both for this kind of counseling and support, but also kind of helping understand when people do need to kind of think outside the box and pursue like third party reproduction and things that someone never really grew up thinking that they would be doing in their life. But now are, you know, I think social workers are a wonderful resource from that perspective. And then, you know, there are online coaches, there's online communities. Those can be really wonderful as well. I think you have to be a little bit careful in finding the right fit for you, but there are people that are really well trained in this space and a lot of them have gone through infertility themselves. So they can uniquely understand what you're going through. As someone who's provided care to thousands of patients at this point in her career, you seen the good, the bad, and the ugly. Help patients and patient advocates who are listening today understand what you wish everyone knew when walking to your office for their first patient consult about the emotional roller coaster of going through fertility treatments. I wish the people knew that going through fertility treatment and IVF and being successful doesn't necessarily mean being positive all the time. I think in our society, we are really kind of predisposed to be putting on a happy face and sharing the good and sharing the happiness. But this is really hard and you can experience all the emotions that I mentioned before, grief, loss, anger, blame, guilt, and the guilt can come in multiple different ways as well. And you got to let yourself kind of honor those feelings. I think that people do better when they are open about the emotions that they're feeling and recognizing that everybody goes through these emotions. I don't think I've ever seen a patient who's gone through fertility treatment, have a completely positive journey. Even if it goes from A to B and baby within three months, I think there is so much that comes into this. And most importantly, I also wish that people knew that their experience through IVF and their either walking away with a baby or not with a baby does not say anything about their worth. What advice would you give to a patient or a family member who's supporting a patient going through their IVF cycle where they feel like they're failing? If you are in that moment where you feel like you're failing or you're losing hope, I would hope that you would bring it to your physician or your team so that they can empower you and support you to take a break if you need it. Focus on some other things that both would benefit you from a fertility perspective but also from an experience perspective. So getting really good sleep, I think, is always forgotten. Everyone always asks me what lifestyle things they can do to improve their outcomes and sleep is always the first thing that I say because that's something we don't really focus on as a society. Drinking lots of water, moving your body in some way, which doesn't mean necessarily running a marathon, but we know that exercise brings endorphins. So moving your body in some way can physically make you feel better. Find the support networks that you know would benefit you, reach out for different resources. And sometimes it is taking some infertility free time, which could be either a moment, a half a day, an hour in the week that you are completely on focus on fertility and reaching to this goal, which can be so difficult because it is all consuming, but maybe just saying, okay, on this hour, I'm going to go play tennis and that is like what I'm doing. I'm just playing tennis. That's my moment to do this or go get a massage, do a facial whatever you feel like. And then ultimately it may be taking a break from treatment. And while we know that time and age can definitely impact your success, usually a month or two here and there isn't going to be the make or break, whether you're successful. And so if you give your body that time both physically and also emotionally to just be yourself and be away from it all, that can make all the difference in your emotional and mental experience through the process. Well, Dr. Jessica Rina, thank you so much for having what is truly an important and difficult conversation, which is about coping with the unexpected as some others do their fertility treatments. Thank you for the care that you provide to your patients, but more importantly is thank you for having our listeners understand that we're all aligned with our patients and that their success is our success. So thank you again for your time. and thank you for your knowledge and wisdom. Yeah, thank you.