EP 59: IVF and Us
Black women have lower success rates when it comes to IVF (in-vitro fertilization) But why? We hear from Charissa Jackson who shares her journey about going through IVF. We also look into some of the reasons why Black women tend to have higher infertility rates, something that's explained by Dr. Michael Thomas, a reproductive endocrinologist who says one of the reasons why this is happening, is a reason many of us have heard before.
IVF AND US
FULL EPISODE TRANSCRIPT
[00:00:00] Hana Baba: Hey Leila.
[00:00:01] Leila Day: Hey Hana. Hana, today I want us to talk about IVF.
[00:00:08] Hana Baba: IVF, in vitro fertilization. Okay.
[00:00:13] Leila Day: There are so many women coming forward sharing their stories about trying to get pregnant. And there's also this, Hana. There's research that suggests that Black women have lower success rates when it comes to IVF.
[00:00:29] Hana Baba: Lower success rates. Why?
[00:00:33] Leila Day: We need to stoop this out.
*Voices of The Stoop, intro music: The Stoop. The Stoop. The Stoop. The Stoop. Stories from across the Black diaspora that we need to talk about. My cousins were water and grease girls, and I couldn't be a water increase girl. That's what I'm talking about, ballerina in the hood. We be Gullah Geechee anointed people. When a Black woman walks up to the desk in labour, what preconceived notions do you have about her? I didn't even know we had a hair chart. The Stoop*
[00:01:13] Hana Baba: A quick note to our listeners. We are going to be talking about loss. So, take care of yourself while listening.
[00:01:23] Charissa Jackson: No matter where this journey takes us, I have learned that I am my own advocate and to never forget it.
[00:01:32] Leila Day: This is Charissa Jackson.
[00:01:35] Charissa Jackson: When I started to open up about this journey, I promised myself I would show the good, the bad, and the ugly.
[00:01:41] Leila Day: She lives in Little Rock, Arkansas and she's reading from some posts she's made online about her IVF journey. And she's got a list of questions that she's prepared for her next round of IVF.
[00:01:54] Charissa Jackson: Should we be doing genetic testing at this point? Should I have had a sonogram to look for scar tissue in the uterus before we started trying for baby number 2? Is there anything stronger to suppress endometriosis?
[00:02:11] Leila Day: So, Charissa and her husband Dre, they got married in 2008 and they knew right away that they wanted to start a family.
[00:02:21] Charissa Jackson: We went probably for about two or three years just trying on our own. And in that time, you know, you’re charting your ovulation. Everything is so like, ‘Okay, I’m ovulating.’ You know, everything is so in step, right. Like, everything is so planned, I mean.
[00:02:46] Leila Day: Did you have one of those charts on your phone?
[00:02:48] Charissa Jackson: Yes, I was buying the ovulation predictor kits and- Goodness I can't even begin to tell you how much money I probably spent on ovulation kits and pregnancy tests.
[00:03:00] Leila Day: After three miscarriages, her OBGYN sent her to a fertility clinic in Little Rock, Arkansas.
[00:03:08] Charissa Jackson: Honestly, I'm not sure what tests were done in order for them to like, come to the realization that I have endometriosis. But that was one of the things that was described to us as like, ‘This could be what is preventing you from getting pregnant.’
[00:03:31] Hana Baba: So, endometriosis. That is when the tissue lining of the uterus forms outside the uterus, and it can be really painful.
[00:03:39] Leila Day: Yeah, so that was one of the many things they looked at when evaluating Charissa but there's a lot of other tests that happen when you go into an IVF clinic. You know, they test the sperm count to see if the sperm is viable. They look for blockage in your fallopian tubes. They measure your hormone levels in your blood. It's a lot.
[00:03:49] Hana Baba: And for Charissa they found endometriosis. So, basically the IVF doctors told her to go back to her OBGYN for surgery so she can have that tissue removed.
[00:04:13] Charissa Jackson: So, I had the surgery for endometriosis, and they made me wait a cycle or two before we were able to do IVF.
[00:04:25] Leila Day: And you didn't have really painful periods so-
[00:04:27] Charissa Jackson: I did but I didn't know that that was uncommon-like I didn't know that-
[00:00:31] Leila Day: Yeah.
[00:00:32] Charissa Jackson: I thought that that was normal.
[00:04:34] Leila Day: Yeah, right because when you go to a doctor and you say, ‘I have really painful periods, really heavy bleeding, really bad cramps.’ they say, ‘that's normal.’
[00:04:47] Charissa Jackson: That's normal.
[00:04:48] Leila Day: That’s being a woman.
[00:04:49] Charissa Jackson: That's normal. You know, it- Didn't know it wasn't normal you know.
[00:04:55] Leila Day: Yeah.
[00:05:58] Hana Baba: Leila I have to say this is all sounding really familiar. This idea of doctors just not acknowledging a woman’s pain, not hearing her.
[00:05:11] Leila Day: Right and research shows that up to 50% of women who have fertility issues have endometriosis.
[00:05:21] Hana Baba: So, what did Charissa do after the surgery?
[00:05:25] Leila Day: So, she tried to get pregnant again. Remember she was only 25 around the time and she was just married and so her mind was set.
[00:05:34] Hana Baba: So, she was focused on having a family. So, Leila I have this question. How is IVF supposed to work? What are the steps?
[00:05:47] Leila Day: So, a woman is given a hormone medication to stimulate the eggs and then they monitor the growth of her follicles. Those are what hold the eggs. Then they give her what's called a trigger and it's a shot that releases the egg from the follicles. Next you go in for a procedure where they harvest the eggs. They use this little tool, and they carefully suck them out. And then the next step is they take sperm, and in Charissa’s case, it was her husband’s sperm, and they fertilize the eggs. Next you hope to have some embryos that are analyzed, and the doctors make sure they're ready for the final step which is transferring the embryos into your uterus.
[00:06:29] Hana Baba: Okay, so Charissa is at the point where she's told to trigger. To give herself this injection where the eggs will be released.
[00:06:37] Charissa Jackson: So, my first round of IVF they were able to retrieve 22 eggs.
[00:06:45] Leila Day: That's a lot. Right?
[00:06:46] Charissa Jackson: Yeah.
[00:06:48] Leila Day: So, Charissa decides that she wants to transfer two of the embryos with hopes of having twins.
[00:06:54] Hana Baba: Alright Charissa!
[00:06:56] Leila Day: Yeah, I mean why not? She had planned this all out.
[00:07:01] Charissa Jackson: We got the phone call. I was pregnant. So, we go in and we find out both of these embryos are attached. So, we're pregnant. We're pr- We're pregnant with two right which was absolutely mind-blowing for me.
[00:07:23] Leila Day: Charissa was excited about the twins but 4 months into her pregnancy, when she went to her doctor for a check-up, the news wasn't good. She was told the twins wouldn't make it and she would need to deliver them right away
[00:07:38] Charissa Jackson: So, I don't talk about this story a lot. I have shoved it so far- I have shoved it so far in the depths of my memory that remembering the details now is kind of mindboggling that I can. Because I had to figure out how to forget it and I delivered them, and I asked not to see them. Like I was just like, I cannot even look. Just take them away. So, after that I went home you know. You're trying to recover, grief, all that.
[00:08:24] Hana Baba: Leila this is- It's just so hard to hear. I don't know how Charissa is even able to share this story. So, Leila all of this was happening with Charissa. How she is processing this? How is she like dealing with all of this?
[00:08:42] Leila Day: I asked her because I went through IVF too. Do you remember like, ever having a moment of resentment towards people that had babies?
[00:08:56] Charissa Jackson: I don't. I have never been in that space. I know a lot of women that have. I always just felt super sad for myself. I have had so many sorority sisters, friends, that I have celebrated baby showers for and for me it was like, I’m just sad that I can't experience this. Never jealousy towards them or resentment towards them. I just have never felt like that.
[00:09:34] Leila Day: People that have their babies, you know, pushing their strollers, you know, like nursing or you know. It was just- I just couldn’t even look at it. It wasn't that I would- It wasn't- It would anger me.
[00:09:47] Charissa Jackson: Really?
[00:09:48] Leila Day: It would anger me. yeah, I would just be angry. Like just to go to a cafe and see the ladies brunching with their babies. I would just, ‘I got to get outta here. I just can't even be around this.’
[00:09:56] Charissa Jackson: I think it is perfectly normal. I'm probably the abnormal one to be honest with you. but I just- The thing that I found difficult were the questions. ‘When are you going to have a baby?’ You know, just all the questions that come with that. Those are the hard- That was the hardest part for me. So, for me when I went to baby showers or when I was planning baby showers, I would prepare myself for the questions and what was I going to say today. Today am I going to say ‘Whenever God blesses us’ or am I going to be honest and say, ‘Well, I'm experiencing infertility. Is there anything you can help educate me on about that? Like how to get through that, you know? Like since you want to be all in my uterus. Let's talk about it.’
[00:10:54] Hana Baba: Leila you brought up something here that I don't think a lot of people would admit. You went through IVF.
[00:11:05] Leila Day: Yeah, I mean I did, and it was something I didn't even tell you about. I mean it was right around the first year that we started The Stoop. It was the beginning of it for me. And I was frustrated, I was angry and tired, and I needed to focus on something new and so I just absolutely threw myself into creating the show. It was- It was what kept me grounded that entire time.
[00:11:38] Hana Baba: And you also said like this feeling that you had which was resentment. It's you know, I mean I get it. I get it. It's very natural to have that kind of a feeling.
[00:11:51] Leila Day: Yeah, I mean I feel like you go through these moments where you're scrolling through pictures of brown babies on Instagram and the next moment, you're just boiling over angry, you know watching a woman in a cafe making ‘googoo’ noises at her baby. I'm not going to lie. There was a moment where I could not be around people with babies.
[00:12:14] Hana Baba: I can imagine- I can imagine it being triggering. That makes sense. That makes total sense.
[00:12:20] Leila Day: Yeah.
[00:12:22] Hana Baba: But Charissa said she didn't have that experience.
[00:12:26] Leila Day: No, she didn't. She didn't have that resentment, but part of the resentment also comes up for what is paid out of pocket for IVF. We haven't talked about this yet Hana, but IVF can-
[00:12:41] Hana Baba: No, what does that have to do with it?
[00:12:43] Leila Day: Well, I feel like part of my resentment was not towards Black women, but it was towards women that could afford it and most of them happen to be White women that- In California. So, IVF isn't covered by a lot of insurance plans, and it is something that you start to see as like, a privilege of the elite right. It makes you start thinking about like, what about all these Black women who can't afford this, you know. How do they look at women pushing their strollers with their twins, you know, knowing that getting pregnant is just reserved for people that have means in so many states.
[00:13:26] Hana Baba: Yeah, like you said it's not always covered by insurance plans. There are so many companies who do not cover IVF. But for Charissa it was covered.
[00:13:37] Leila Day: And in places like Chicago, IVF is covered by law.
[00:13:42] Hana Baba: But Leila, there’s this interesting fact that even with 32% of Chicago's population being Black only about 5.3% of Black women choose IVF. So, I mean it's interesting if everyone is covered by insurance, by law, then why aren't more Black women doing IVF. There seems to be something else here.
[00:14:13] Leila Day: Yeah, and Charissa thinks a huge reason why so many women may not go through with it or even talk about it, is because of the shame.
[00:14:30] Charissa Jackson: I literally hid this for years 'cause I was scared about judgment. I was scared about what people would say.
[00:14:41] Leila Day: Why though? What gave you this feeling that people would judge you?
[00:14:48] Charissa Jackson: I just overall feel like infertility and IVF is so taboo and when you grow up and you're a little girl, your grandparents- You see your grandparents have 10,12 kids. Your parents have as many kids as they want to as far as you're concerned. And nobody talks about the struggle. I was very ashamed of it. All my friends, all my sorority sisters around me that I, you know, knew of, were just having babies when they wanted to have babies.
[00:15:26] Leila Day: Hana this is a good time to talk about this idea, this myth about the hyperfertility of Black women. Because if you think about this shame that Charissa is talking about. It comes from a very specific place.
[00:15:41] Hana Baba: The myth of the hyper fertile Black woman. It came from racism, and it was very blatant racism. Back in 1932, there was even an article published in the American birth control league's journal. Their journal is called Birth Control Review. And article said, ‘the present submerged condition of the negro is due in large part to the high fertility of the race under disastrously adverse circumstances.’
[00:16:13] Leila Day: Yeah, I mean that's horrible and so socially we're being told that we’re fertile myrtles, that we have too many babies. I mean, even W.E.B Dubois once wrote, ‘The mass of ignorant negroes still breed, carelessly and disastrously.’
[00:16:30] Hana Baba: But Leila, the myth: it doesn't line up with the reality. 'Cause first of all, we know there was a decline of Black women having babies and this was noted since the Jim Crow times and it’s still said to be the case today.
[00:16:47] Leila Day: Right. I mean according to the centre for Disease Control and prevention Black women are two times more likely than their White counterparts to be infertile but why is this a thing. Why such higher rates? How does this all connect?
[00:17:02] Hana Baba: We've got to talk to someone who's got some more answers.
[00:17:20] Leila Day: Back in 2008 a fertility clinic called Shady Grove examined 40,000 IVF cycles of more than 22,000 White and Black patients. They took a look at this idea that Black women may have lower success rates when it came to IVF. So, there are quite a few studies that show that both Black and White women produce around the same amount of eggs but when it comes to the transfer of those embryos, Black women were less likely to become pregnant. And I reached out to someone to talk about this. Someone who might have some answers.
[00:17:59] Dr. Michael Thomas: My name is Michael. Doctor Michael Thomas. I am a fertility specialist at the University of Cincinnati.
[00:18:07] Hana Baba: Doctor Thomas is the president of the American Society for reproductive medicine. He's a reproductive endocrinologist.
[00:18:15] Dr. Michael Thomas: A fancy way of saying fertility Doctor.
[00:18:17] Leila Day: I asked him about these studies. As Black women, are we really less likely to have success with IVF? Is this true?
[00:18:27] Dr. Michael Thomas: It’s very true. There are a number of factors that-- That sort of cause that phenomenon to take place and it's been seen across the board in other studies as well, that Black women have lower success rates. A lot of it has to do with the fact that doctors in general, that they see, their general ONGYNs, will tell them to go out and get pregnant more so, and for longer periods of time than they would for their Caucasian counterparts. Therefore, Black women are sort of sent into this spiral where they're going to see the doc, the doctor keeps telling them to try, whereas the White patients goes straight to the fertility specialist.
[00:19:06] Hana Baba: Leila am I hearing this right? That Black women are not referred to the right people in time, to help them with fertility?
[00:19:16] Leila Day: Yes, and Doctor Thomas says he's seen this over and over again.
[00:19:21] Dr. Michael Thomas: There's this thought that these doctors. Black and White doctors just think Black people can get pregnant. They don't need fertility help. All they need is time because we see a lot of Black people out there and they're getting pregnant all the time, therefore you're going to get pregnant all the time. So, there's this sort of weird mentality that these doctors, unfortunately most of them are Caucasian, just think that Black people could just get pregnant. They don't need a lot of help; they just need to be out there trying. and then when they come back, by the time they come back, they're now older.
[00:19:55] Hana Baba: So, it's surprising but not surprising that doctors aren't taking these concerns with the same seriousness as they would with some of their White patients.
[00:20:09] Leila Day: And doctor Thomas says that that combined with some of the conditions that are quite common for Black women create this spiral.
[00:20:19] Dr. Michael Thomas: Black women are more likely to have fibroids. Caucasian women 20 percent, 25 percent at the most. African American women 50 to 80% may have fibroids. Fibroids may contribute to your ability or inability to get pregnant because you can have fibroids blocking the tubes, you can have fibroids that can cause a problem in the cavity of the uterus and therefore not allowing a baby to implant very well.
[00:20:47] Hana Baba: So, he's saying issues like fibroids and endometriosis, those are things that can lead to this lower outcome.
[00:20:56] Leila Day: And, you know, another study said that BMI or body mass index, weight, also being the reason why Black women have more infertility. But here's the thing. Doctor Thomas says this.
[00:21:10] Dr. Michael Thomas: Even if you take out the patients who have had fibroid issues. Even if you take out the patients that had tubal issues. Even if you take the same group of patients with the same BMI, those African American women still have a lower success rate, and no one knows completely why.
[00:21:27] Hana Baba: So, Leila if women are showing up when it's too late, and we already know that we have lower outcomes, worse outcomes, what does doctor Thomas say we should be doing? Like when- At what point should a woman go and get checked out.
[00:21:48] Leila Day: Well, here's what Doctor Thomas says.
[00:21:51] Dr. Michael Thomas: The true definition of having a fertility problem is if you're under 35 trying for a year. If you're over 35, trying for six months. But if you have irregular cycles go see a fertility doctor right away. Send the patients to the fertility doctors sooner. The doctors keep saying, ‘Oh, try for a year. Don't see me for two years. keep trying.’ and that's not good.
[00:22:30] Leila Day: So, back to Charissa’s story. The last we heard she had just been through this traumatic experience. She was given some time to heal by the doctors and then told she could try IVF again if she wanted to. And she did because she still had three embryos left.
[00:22:48] Charissa Jackson: You know, when you go in for transfer, they've already thawed your embryos out, right. Like they're prepared for you to come in and just going to transfer these embryos that they've already thawed out. So, I remember being on the table and them saying, ‘There's fluid in your uterus.’
[00:23:06] Leila Day: So, they had thawed two of her three embryos, right. And told her they couldn't do the transfer. There was another problem with her uterus. Fluid had accumulated.
[00:23:20] Hana Baba: So, what happens then to the two embryos that they thawed.
[00:23:26] Leila Day: She couldn't use them.
[00:23:27] Charissa Jackson: But the thing that I want you to remember here is, nobody checked. Nobody checked to make sure that my uterus was clear of fluid before my embryos were thawed. So those embryos were- They were wasted. 'cause you can't refreeze them.
[00:23:50] Leila Day: I would have lost it. I would have absolutely lost it. And I probably would never ever do it again. And you did do it again.
[00:24:02] Charissa Jackson: So, I had one egg left. So, what would you have done if you had one embryo left? Right, like you're not going to leave your baby.
[00:24:12] Leila Day: And Charissa does try again
[00:24:15] Charissa Jackson: My daughter is a rainbow baby. So, I celebrate her as that.
[00:24:19] Leila Day: Can you explain what that means?
[00:24:22] Charissa Jackson: Yeah, so having a rainbow baby is, having a baby after having experienced a loss. A rainbow comes after the storm. So, it is God's promise that he won't cause pain without there being something beautiful, which is the rainbow.
[00:24:46] Leila Day: You have your rainbow baby.
[00:24:47] Charissa Jackson: I do. I do.
[00:24:51] Hana Baba: So, she did it. She had her baby.
[00:24:54] Leila Day: But Charissa is now determined to have another baby. She's been going through the entire IVF process all over again and she journals about it.
[00:25:05] Charissa Jackson’s (reading from her journal): I was calm and less anxious than normal. The highlights of what we discussed: low AMH but overall…
[00:25:13] Hana Baba: Leila, it sounds like it's still been challenging doing this all over again.
[00:25:20] Charissa Jackson (reading from her journal): …difficult and painful experiences. Sonogram. The doc told us he would be open to doing another cycle and suggested we take…
[00:25:30] Hana Baba: So, Leila you know when I think about Charissa and what she said at the beginning of the show, you know. She's a social worker. And she works with kids who are in the foster system. Many of them are abused. And the kind of person who does that kind of work, it just says so much about her.
[00:25:52] Leila Day: Yeah, and I asked her about this? Why is it so important for us to have our own baby?
[00:26:00] Charissa Jackson: That's a great question and I don't know that I have the answer to that. I am a big supporter of adoption. I think it's amazing. The kids that I work with every day are in the foster care system a lot of the times. For me there is something really special about like growing a baby inside you and feeling all those emotions, and the kicks, and just carrying a baby. And so, I think for me that is the first priority. I don't know why that is. I can't answer that part.
[00:26:51] Leila Day: Talking about all this with Charissa was actually a good thing Hana. I know I was not sure if I wanted to go there myself and even to bring Charissa back into the past and to talk about everything she went through. But one thing that we both thought was important in making this was that, there is a statistic out there that we have to acknowledge. We do have more difficulty more- Lower success rates when it comes to IVF and knowing some of the reasons behind it can help us in the future. And sharing our stories.
[00:27:32] Hana Baba: I mean that's what a lot of black women do anyway. In order to find solutions, they come together.
[00:27:40] Leila Day: Yeah, together.
[00:28:12] Hana Baba: And that's The Stoop. The Stoop is a proud member of Radiotopia from PRX. A network of independent listener supported artist owned podcasts.
[00:28:23] Leila Day: The Stoop family includes producer and Natalie Peart, engineer Chris Hough and art by Neema Iyer.
[00:28:30] Hana Baba: Music by Daoud Anthony. Support for The Stoop comes from California humanities, a non-profit partner of the NEH. Find them at Calhum.org. And special thanks to the NPR story lab. Bye.
[00:28:44] Leila Day: Bye.
