Interlude: Not Broken
What happens when getting pregnant isn't the difficult part, but staying that way is? How do you hold yourself together when every miscarriage feels like you are broken in two? This is the face of recurrent pregnancy loss. We take a break from our stories to let an expert, Dr. Lora Shahine, guide us through what it means, how her center is helping patients, current research in the field, and most of all, how to find hope.
Dr Lora Shahine's book, Not Broken: An Approachable Guide to Miscarriage and Recurrent Pregnancy Loss, is available wherever books are sold.
From Left: Dr. Lora Shahine, Dr. Lorna Marshall, Steven Mavros, L.OM.
TRANSCRIPT
(transcripts are for purposes of searching and are approximations at best)
This is Waiting for Babies. I'm Steven Mavros. You may not have noticed but there is a running theme throughout the stories we've presented so far. Every one of them at some point involved a miscarriage. Each one was handled very differently universally and especially in our culture in America. They were grieved privately. Few outsiders knowing something that was possibly devastating going on in their lives. Now I want you to imagine not just enduring this once but two three and four times someone very close to me suffer through six of them. Can you even fathom that. Six of them.
Most people who are interested in having a child look at a positive pregnancy test with joy and elation. I've had patients bring me a piece stick wrapped in a tissue in their purse like they just found a gemstone and a crack in the sidewalk. But after losing a pregnancy more than once suddenly that joy becomes hesitation and a dreaded phrase in this field we refer to as cautious optimism. Ugh who wants to be cautious with their optimism. You just want to be hopeful and have no added weight to it. So even if getting pregnant for you isn't the hard part it's hard to know what to do when suddenly one miscarriage turns to two or more. And remember miscarriages are more common than most people realize.
We know so many women that have had miscarriages. One in four women will have a miscarriage. And if you have more than one miscarriage is considered recurrent pregnancy loss. But there are very few centers or providers that are really focused on this as a practice and that's what I want to focus on today.
The concept of recurrent pregnancy loss. We're going to take a quick break. From a personal fertility story and get the perspective of a physician in the field. I had the pleasure of interviewing a reproductive endocrinologist which is how we refer to a fertility specialist in the medical field. Dr. Shahine recently wrote a book whose title really struck me called not broken.
I am Dr. Lora Shahine and I practice at Pacific Northwest Fertility in Seattle. So private practice it's affiliated with the University of Washington were right down in downtown Seattle. I joined the practice in 2009 but I am originally from North Carolina so a long way from home but I'm really happy to call this home.
We I'm really touched on how some of the doctors get into this field and what their path is was like recurrent pregnancy loss something you knew you were going to get into with the time.
Honestly no. So we're kind of pregnancy loss is a part of training for reproductive technology and infertility which is a fellowship training or subspecialty training after residency. So even in medical school and then you figure out what you want to focus on. I wanted to focus on obstetrics and gynecology. I did that for four years and through that I realized I was really drawn to infertility and that field so I wanted to do that subspecialty. And because of a personal I'm not you know I it I just I was one of those people that just liked
everything in medical school. As soon as they did a rotation I was like This is what I want to do. I like surgery I like medicine. I really liked women's health and my very last rotation that I did was obstetrics and gynecology and I was like this just combines everything because it's women's health and it's surgery and it's long term care etc.. And then in residency I was just really drawn to the reproductive endocrinology department. I loved that technology. I of the people that I met. It was a really exciting time because genetic testing was really starting to come out and it was really controversial. And I just really was drawn to it.
And I like the idea of helping people at a time when they're really struggling. It's a really unique time. And infertility is a very humbling and it can affect anybody no matter what socioeconomic class you are or your background or your career. And I just really I was drawn to it.
Do you remember the first patient you had to tell that they were having a miscarriage like Do you remember what it was like in the beginning when you had what I really remember?
And I actually talk about this in the introduction in my book is how in fellowship you know we follow our own patients I would call them with their pregnancy tests. And I called this woman and I said hey you have a positive pregnancy test.
And I was so used to hearing people say like oh my gosh I'm screaming and yelling and so excited.
And it was dead silence on the other end of the phone. And she just sort of could hear this sort of deep sigh. And I was like you know hey what I thought this is good news. Oh thank you so much for calling me Dr. Shahine. For me this is really just the beginning. And she kind of hung up actually. And I really took a step back and I realized oh my goodness every time she has had a positive pregnancy test it has not ended well she'd had multiple miscarriages and it was a really humbling and eye opening experience and so that really sticks out in my mind and whenever I'm talking to people about how to care for patients with miscarriage I just warn
them that really the joy and innocence of a positive pregnancy test has really been taken away from these people. And so don't be surprised if you get an unexpected reaction and they really might want to be very guarded until they get further along and that's OK because you have to meet them where they are.
Dr. Shahene did her fertility fellowship at Stanford University working with Dr. Ruth Lathi who created a unique program back in 2007 around recurrent pregnancy loss bringing the expertise of many physicians with different specialties together around this one specific issue.
So I learned a lot being there. And then when I came up to start my practice here in 2009 really focused on just you know learning Seattle and doing really good fertility care but I realized very quickly that there wasn't anybody in the area that was really focused on recurrent pregnancy loss even though there are several reproductive endocrinologists. And I just had this unique background and I had this unique interest and so I started my own center for her parents who are here in 2011 and I've slowly watched it grow and it's been really a wonderful experience.
Now I remember recurrent pregnancy loss as a unique form of infertility and that sometimes getting pregnant isn't the hard part.
There are so many clinics and you know providers that this is the norm that somebody calls and says Hey I'm pregnant. And they're like OK we'll see you at 12 weeks you know and for someone who's had first trimester losses that's an agony it's a long time and so just seeing the patients for a couple of ultrasounds before they get out of the first trimester and having them know that if they do have another loss we're going to really care for them and to supportive care is really important as part of her center.
One of the unique things Dr. Shahine does is check for diminished ovarian reserve regardless of the person's age. Now we talked in our last episode about the concept of diminished ovarian reserve which is a fancy way of saying the ovaries and a woman are running low on the number of eggs left. This is diagnosed by checking blood levels like FSH, AMH, estradiol and doing a vaginal ultrasound to check in the beginning of a woman's menstrual cycle the number of antral follicles are pre follicles that are all around and they have the possibility to develop. So Dr. Shahine was noticing a pattern with patients with recurrent pregnancy loss. She thought that even her patients who were young that maybe there was a correlation between those with diminished of
reserve and those experienced recurrent pregnancy loss as women with some minister very reserved don't have as many good quality eggs remaining.
I have a very standard evaluation that I do for patients that have recurrent pregnancy loss. And I've always checked ovarian reserve tests and that's not a part of a standard recurrent pregnancy loss evaluation. If you look at the expert guidelines from ASRM which is the American Society of Reproductive Medicine or ACOG which is sort of governing we group. But I'm seeing patients that are struggling to start their family and I know that the ovarian reserve can you know dictate people's choices.
You know if they find out they have low ovarian reserve they might do more aggressive treatment sooner. It just seemed like a really important part of the evaluation to me even though it wasn't in guidelines. And so I've been doing that now you know since 2000 and 11 and I really started seeing a trend that a lot of recurrent pregnancy loss patients have diminished ovarian reserve meaning a high FSH and a low AMH. And when you start to see a trend you know and I started asking my colleagues like hey do you check ovarian reserve or are you seeing this trend. And it was pretty common. And then
a really great study came out in 2013 by Katz-Jaffe and Dr. Schoolcraft out of CCRM. And they were looking at the percentage of embryos or unbalanced chromosome number of embryos. In patients that were doing IVF and they compared patients with diminished ovarian reserve and normal a very reserve nothing to do with miscarriage but they saw that patients with similar ages who had diminished ovarian reserve they had a higher percentage of aneuploidy or abnormal embryos than you would expect.
And I sort of thought you know a lot of my patients are choosing to do IVF with chromosomal screening as a treatment option for recurrent pregnancy loss because the most common cause of miscarriage is a chromosome imbalance. So if you can do that selection before they get pregnant they have a lower chance of miscarriage. But a lot of these patients even when they're young they have a significantly higher percentage of abnormal embryos. I wonder if I kind of look at that but specifically look at it with recurrent pregnancy loss patients I wonder if I would you know kind of see the same thing.
And my hypothesis was yes I think even my patients who were at a young age with recurrent pregnancy loss if they have diminished ovarian reserve they have a really high chance of having a lot of abnormal embryos. And so I did I did look at that and it makes biological sense to me because I have this conversation with women every day. I really think that there is a link between advanced age diminished ovarian reserve poor egg quality miscarriage and any party which means abnormal embryos. And the way I explain it to patients is we're born with the same eggs we're going to have our whole life.
The eggs are literally the oldest cell in our body. And when we're born our eggs are frozen in a genetic state and it's when we obviously eat whether we are really when we're 20 or 40 that our eggs have to finish that genetic work. That's when they have to do all of that work and you have to get rid of half of their genetic content in order to accept the genetic content from the sperm and no cell in our body works the same at age 40 as it did when we were 20. And so it doesn't mean all of the eggs are going to make mistakes but it's just more common that older eggs are going to make more mistakes. So therefore as women age it takes longer to get pregnant because there are fewer good eggs. They have a lower chance of success with all fertility treatment and they have a higher chance of miscarriage because the most common cause of miscarriage is from a chromosome imbalance and 95 percent of the time that it's the egg that made that mistake. Sperm is not off the hook. Not every sperm is perfect it's just going to ask.
Yes. Like it sounds like you're kind of throwing women out of the boat. No. So there is a difference in fertility with age.
So as men age fertility is affected as well. And there's so much more research. Thank goodness that's coming out with men. We still have so much more to learn. Everything been so focused on women but we are learning that you know as men age you know there's there are effects on the sperm and fertility but it's just not as dramatic because guys make sperm every single day doesn't mean they're all perfect but they just aren't sitting in the body for years and years and years and dangerous difference with so if you have someone with diminished ovarian reserve who's like 29 or 30 the same thing happens like you're still saying more and you're still saying like it almost
the deal is almost the most relevant thing that's happening.
Yes so. So age is irrelevant in that case.
Right. I think I think that diminished a very reserve can be a reason or a cause of unexplained recurrent pregnancy loss. So in these young patients we make sure that their uterine lining is perfect and their genetics is oak are OK and their hormone levels are OK and you kind of rule out anything that you can test for and the parents that are causing miscarriages. That is very often an a quality issue. And I think that recurrent pregnancy loss can be an early warning sign of diminished ovarian
reserve. Not always but that's why I check it because I don't want to miss that.
Now I don't know how many of you caught that but to me there was a positive ray of light that Dr. Shahine just shared and what she said so far is diminished ovarian reserve and her current pregnancy loss.
If somebody has diminished her very nerve those tests are not great at really predicting whether someone's going to have a baby. Those tests predict how someone's going to respond to fertility treatment. So especially patients who have unexplained recurrent pregnancy loss. If you assume that the reason they're having losses is because they have you know poor quality eggs or are they getting pregnant with embryos that have a chromosome imbalance. Well one of the treatment options is what one is to just keep trying and the other is to do IVF and to test the embryos for chromosome
content before they get pregnant. And that's a really interesting conversation to have with people either just try naturally. And these people are conceiving. Right. Or you know a significant investment not only financial but emotional with IVF. That is not 100 percent guarantee. And so when people are trying to think through that if they have really low AMH or high FSH. If they have diminished ovarian reserve their chances of success with IVF are really low.
And there are some times where the chances of success with their next pregnancy might not be that much improved with IVF which is a crazy concept to get because we hold IVF up on this pedestal and we think it can kind of fix everything. IVF is amazing and it's wonderful. And the success rates just keep getting better and better. But our biggest limitation is eggs and sperm. So IVF is great if we can find good eggs and we can find good sperm but we can't make the eggs and sperm better. What we need is to find a way to make the eggs better or
make the sperm better or we need a way to know before someone even starts their IVF cycle. Is there a good egg in the cycle. We don't know that yet. We kind of try and we gather and we say you know we hope. But if somebody really truly has significant diminished ovarian reserve I really talk to them about trying naturally. And really alternative family building if they're really ready to do something different because I can't really fix the eggs or change the eggs but their chances of success with donor egg for example can be as high as 80 percent.
So I just want to make sure they know all the options and kind of go through really carefully.
One of the cool things that you had said was that it was just in a hopeful way was that it sounds like people who are going through recurrent pregnancy loss can still get put like there. They still have just as good a success rate just with the next pregnancy. Yes.
You I mean I think one of the most important things that I try to leave people with is hope because when they come to me their only frame of reference is every time they get pregnant they don't have a baby. Right so their miscarriage rate is like 100 percent. But every time they conceive it's a brand new chance. And if it really is that they haven't found that right embryo to conceive with the very next time. Guess what. It's a brand new embryo it's a new egg and it's a new sperm and it truly is a new chance. And so one of the
best studies and probably we're never going to be able to replicate this study is a study that came out in 1999 by a first author is Brigham and they basically looked at about 700 patients who had recurrent pregnancy loss and just sort of saw what happened with their next cycle and they didn't. Our next pregnancies use me and they didn't do any intervention you know or testing or anything they're just like OK you've had this many losses this is your age what happens the next time you get pregnant. And in that if a patient was 40 years old and they had had five previous miscarriages and their
six pregnancy there was a 50 percent chance they would have a baby that's really high.
I know.
And that seems a little bit overly optimistic but that is the only study that we have that really looked that kind of long term things. And it really doesn't feel like that with patients. And you know it's kind of how you look at it like some people might say wow a 50 percent miscarriage rate that's really high. And then other people might say wow 50 percent chance of a baby that's really high.
So it's kind of how you look at it.
But I think it's important to say that there is there's always a chance and there are women who come to me that have had multiple miscarriages and might have significant diminished ovarian reserve other providers might have said there's no way that you're going to you know have a baby on your own but it can still happen as long as you are having periods. You're most likely obviating you have eggs and there's always a chance.
If I could do one thing with this podcast is to take away the fact that on average one in four pregnancies can end in a miscarriage though that fact is unfortunate. It's a reality I feel like we should all figure out ways to acknowledge and support each other with and be open about whether we should be taking cues from other cultures and how they deal with miscarriage or just creating our own. Thankfully even popular culture is starting to spread the word a little bit.
The conversation is starting to change people are being a little bit more open about it. Beyonce shared it with her last album that she had a miscarriage between her two pregnancies. You know Mark Zuckerberg from Facebook that 2013 July 2000 I remember that Facebook post very clearly because I had just you know it's been two years into my recurrent pregnancy loss program and he and Pam wrote that me.
I'm acting like I know them I don't know them. You know Pam and Mark. But they wrote that really wonderful statement.
I put that in my book to just sort of saying you know hey we're so happy to make this birth announcement but we just really want to let you know that we had three miscarriages before we got to this point. And we believe you know sharing is important and we hope that this might help other people. And I think the more people share then fewer people are going to feel so much shame and stigma.
And I think we can learn a lot more people are more open and help each other.
We're back with our first interview we discussed the concept of rituals and how Japan has this wonderful tradition of helping those grieve and deal with miscarriage.
And in the United States there's such a stigma around miscarriage a little bit of shame a little bit of guilt especially women are really good at blaming themselves. I'm sure it's because I was stressed or I had a glass of wine before I knew I was pregnant. And people have losses most often in the first trimester before they're showing or before they've told people. And so they haven't told people that they're they're pregnant and then they're grieving on their own and they don't really have an outlet. And I think that this support of someone is one of the most important
things as a provider that I can do and provide in our recurrent pregnancy center because a lot of times we don't find an answer why someone's you know having miscarriages and know a lot of times we're kind of giving bad news. But what we can always do is support people through. I think it's just really important to acknowledge what a loss this is. And that it's OK to go through all the stages of grief including anger. Frustration sadness and just give them permission to sort of say hey this is OK this is normal. Talk about it.
What do you feel like through all of this. I mean this feel changes like every day I feel like it's totally different. What do you feel like. It's like a one or two things that is pushing you in a direction to make this kind of better for everybody and like make this more successful or just even a more a better process.
The ability to test embryos for chromosomal issues and learn so much more about what percentage of embryos are abnormal and all that we've done through IVF and that technology has drastically changed the care for patients with the current pregnancy loss because we've known forever that the most common cause of first trimester miscarriage is a chromosome imbalance. And now we're learning from women who are you know going through IVF and testing embryos that this really is the trend. And so that dramatically changes how you counsel patients because up
until that point miscarriages have been all the woman's fault. Write it's it's her body.
She's broken her baby is not body friendly you know. And you know the partners you know blaming the women the women blaming themselves the family blaming the woman. And now we really realize that it's the embryo and that is the whole premise of this book. I'm so tired of women coming to me feeling broken. It's my fault. I'm doing something wrong. My body is broken whereas I know that if we just find the right embryo or if they just try again they always have hope for it.
I mean that's huge.
And that's why I want to change the conversation for women because you know the science is showing that the majority of the time it's not their fault. They hopeful and let's do this together.
One of the things that struck me about Dr. Shahine’s book was the cover on the cover of not broken is a piece of pottery with Golden Lines highlighting where cracks had been joined together. This is the Japanese art of kintsugi, literally meaning golden joinery and it's a method of fixing broken pottery with lacquer resin dusted or mixed with powdered gold. It brings out the idea of embracing or or our brokenness. The legend goes that in the late 15th century the Japanese Shogun Ashikaga Yoshimasa sent a damaged Chinese tea bowl back to China for repairs when it was returned. It was repaired with these ugly metal staples. And that prompted him to get
Japanese craftsmen to find a repair method that was more aesthetically pleasing. It became treasured and popular enough that artists were even accused of deliberately smashing valuable pottery so they could be repaired with the gold seams of kintsugi. Suddenly the pristine became less beautiful than the broken. The philosophy and concept is embracing the flawed or the imperfect. That repair requires transformation and those cracks that mark our difficulties should not be in shadows but should in fact be illuminated for they are what make us what we are. Think of it as olden day mindfulness, a reminder to live in the now where you are and what you are not attempt Going back to what you were before. This concept is also what Dr. Shahine and why she chose it for her book.
I went to Japan about a year ago and it was always going to a back. I love the culture and it was something that I was exposed to when I was there. And actually on the plane ride home from ASRM with Stephanie Gianerelli I think I just got to do a book I got to do but I got to get this out there just like you know I gotta get it out. And that is when I came up with the title it's just like I'm so tired of my patients telling me that they're broken and they're not broken. Thinking about just everything here we can all get together.
Not Broken - An approachable guide to miscarriage and recurrent pregnancy loss by Dr Lora Shahine is available wherever books are sold and we have a link to it on our Web site at waitingforbabies.com. Thanks to Dr. Lora Shahine for taking time away from seeing patients to let me interview her. We have some things on our Web sites on the concept of kintsugi and the philosophies that come with it including the Chinese philosophy of wuwei and the Japanese philosophy of wabi-sabi. Waiting for babies is produced by me Steven Mavros. We’ll be back next time with another personal interview and a story of infertility.
If you're interested in telling your story live on stage waiting for babies we'll be doing a launch party in Philadelphia on August 9th. I'll be emceeing an event where we'll have five different people get up and tell their story of infertility stories should be around five minutes or so and if you're interested just click contact on our site at Waitingforbabies.com. Thanks and see you next time.
This audio features the song "Closing Ceremony" and "Buffering" by Quiet Music for Tiny Robots and "Divider" by Chris Zabriskie, all available under a Creative Commons Attribution license.