Birth Matters Podcast, Ep 43 - A Black Mom's Care Team Choices for Baby's Cleft Diagnosis

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Today you’ll hear a story shared by Amayra, a Black woman living in NYC who initially planned to give birth at home due to her knowledge about the poor outcomes for Black birthing folks in hospitals. Things took an unexpected turn when she learned her baby had a cleft diagnosis so that she needed to switch to a hospital birth attended by midwives. Amayra shares how she intentionally chose Black care providers not only for her birth support team, including her doula, but also as she selected a surgeon during pregnancy to correct the cleft soon after birth. Amayra also provides a bunch of excellent tips for expectant and new parents toward the end, too, so be sure to listen to the whole episode. After Amayra shares, Lisa will talk about the aforementioned poor outcomes further and will share ways you can help improve maternal health outcomes.

Please note Amayra’s audio had some challenges, but we did our best to adjust the levels to make it as listenable as possible, because we felt it’s such an important story to share.

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Episode Topics:

  • Pregnancy - positive mindset, morning sickness but no vomiting

  • Preparing for birth - finding out that baby has a cleft, risks out of homebirth

  • Shift to Village Maternity midwives

  • Got sick a few days before going into labor with fever and nausea

  • Ultrasound next day

  • Wakes up sweating

  • Goes to bathroom and starts feeling contractions, times them and they’re 5 min apart

  • Midwife wants her to come in to start antibiotics for GBS

  • In triage for around 1.5 hrs, around 4cm

  • Doula support with Double hip squeeze, rebozo techniques, breathing, smelling lavender on cotton ball, holding husband’s hand, she kept visualizing her cervix opening and 

  • Water eventually breaks

  • Kept feeling like she needs to go to bathroom but couldn’t go

  • Getting into backwards kneeling position for pushing

  • Did feel urge to push, feeling exhausted by the time she feels the ring of fire

  • Gives birth in only around 2-3 pushes

  • The feeling of relief after giving birth

  • Explanation of the desire for an unmedicated birth

  • Husband identifies that it’s a boy

  • Confirmation of non-severe cleft

  • Went to Black surgeon to do an operation in the early months, delayed due to pandemic by around a month or so, from April to May

  • Not breastfeeding for 2 weeks post-op, was pumping during that time

  • Seek community if your little one has a deformity (FB groups, etc)

  • Love your baby no matter what, expect the unexpected/remain flexible & other golden tips for expectant/new parents 

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Resources:

Black Maternal Health Resources & Advocacy

Birthing Center Efforts

BIPOC Doula Organizations

Black Student Midwives Requesting Funding

Books

*Disclosure: Links on this page to products are affiliate links; I will receive a small commission on any products you purchase at no additional cost to you.

Interview Transcript

Lisa: Welcome, Amayra.

[00:00:01] Amayra: Hi, thank you, Lisa, for having me.

[00:00:04] Lisa: It's so good to see you. So Amayra is one of my students from birth class and she's going to be sharing her birth story with us today.

[00:00:11] But first, would you please share with us where you are in your parenting journey? In other words, how long ago did you give birth and then maybe what you do for a living and maybe where you live, you live in New York city, right. But maybe more specifically borough or whatever.

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[00:00:24] Amayra: So I'm actually seven months into parenting.

[00:00:27] Nicholas was born in January. I'm a career advisor for the New York state department of labor. And, I live in the Bronx.

[00:00:37] Lisa: Thank you. So, can you share first, before you get into your birth story, a little bit about pregnancy, were there any events to note or, what was it like for you? In what ways did you prepare for giving birth and for becoming a parent?

[00:00:51] Amayra: So as far as with the pregnancy, for me personally, the pregnancy was a breeze. Like usually. I guess what I received from other women being pregnant is, you know, they went through the list of things that they went through, like, weird cravings.

[00:01:08] What is it? Nausea and actually, you know, vomiting. but for me personally, I didn't, I had the morning sickness. I just didn't have the vomiting. So for me that was, that was great, but it was just annoying having that nausea feeling for the whole day. And I mean, I don't know why they call it morning sickness cause it lasted basically the whole day.

[00:01:35] So, as far as with, preparing to be a parent, I mean, that's not really something that I prepared for. I was just really honestly trying to get through the pregnancy. So one of the things that I really did my best to do was to have a positive mind state throughout the pregnancy, because I didn't want any type of stress or, whatever anger I could possibly feel to affect the baby.

[00:02:02] So yeah, so I just did the best I could to keep a positive mindset. what also helps is, I mean, I guess being pregnant people do tend to treat you a lot nicer. So, you know, for fear of, whether they're getting a sty in their eye. So yeah, I guess, dealing with people, relationship wise, they treaded lightly as far as, you know, trying to possibly get me upset or anything like that.

[00:02:28] But I mean, if they did, then, you know, I would just brush it off. But some of the things that I actually did to prepare, cause actually, when I did become pregnant, I didn't know I was, I had some sort of feeling, but I didn't want to get my hopes up, because my husband and I were trying for about almost two years, to get pregnant and, I had the symptoms of being tired all the time and you know, the nausea, but again, I kind of suspect that maybe that safe, but I was thinking the worst, you know?

[00:02:59] Okay. Maybe I'm just really sick or I have some kind of illness. That's what I was thinking. but once I did find out, I, well, before I got pregnant years ago, my sister showed me a movie, the documentary, the business of being born. And from that point I decided, you know, I. Want to give birth at home.

[00:03:20] You know, I don't want to go to hospital. my personal fear was that, you know, statistically African American woman or just Black women, have a higher rate of dying during childbirth and hospitals. And I didn't want that for myself. So I decided, you know, I'm going to go with a midwife and, you know, my husband was looking at me like, are you sure?

[00:03:41] You know, Hospital seems much safer. I'm like, no, so I told them what the statistics were towards that. And once he heard that he's like, okay, so he decided to become onboard.

[00:03:51] Lisa: Do you mind my asking, do you remember how you heard about the worst outcomes for African American/ Black women?

[00:03:59] Amayra: I think, I think, okay. I want to say the conversation started when it was a few years back, that case that made the news of a Black woman in Florida. I think she was in labor and the ambulance didn't come.

[00:04:16] Like they took forever to get to her. And by the time they got to her, she had already died. and I think it was maybe about two, three years ago when that happened, but I could be wrong. but yet that that's when I heard that statistically. you know, African American women or just Black women have the highest rate of mortality when it comes to, giving birth in a hospital.

[00:04:42] So yeah, so, that was my main fear is I can want that and want to become a statistic.

[00:04:47] I did book a midwife and, you know, it was great, you know, I enjoyed the convenience of her coming to me. You know, I didn't have to go to the hospital. To, you know, sit in the waiting room to wait, to be seen and only be seen for maybe less than 10 minutes.

[00:05:03] And then, "bye," you know. She's very engaging, you know, always asked about my wellbeing. So it really felt personal like that one on one care, like you really felt like, you know, you were being well, I felt like I was being cared for. and that, you know, I wasn't just on a, what, like a conveyor belt, like, okay. Next. Okay. So, like, they're trying to rush you out. So that's what I really enjoyed about it. So I believe when she had me go in for my first sonogram, the ultrasound technician, I forgot how many weeks I was in, but you were actually able to see detail on the baby's face. And, she felt that there was possibly a cleft.

[00:05:47] So for me, I'm thinking, you know, cleft, like what? No, that, I mean, so I, I was basically in a state of denial. where, you know, I'm thinking, okay, well maybe it's a mistake. Maybe, you know, since the baby's not really is being stubborn with the ultrasound, you know, maybe the angle, it just looks like there's a cleft, but there really isn't in the cleft. So the more I kept doing the ultrasounds, the more it was confirmed that there is a cleft.

[00:06:20] Lisa: And could they see the severity of it with confidence,

[00:06:23] Amayra: They could. So from what I was told consistently throughout each ultrasound, was that, it wasn't severe, it wasn't, what they call the cleft palate. It was just a slight cleft. And they said, "you know, that can easily be corrected with surgery." so the weird thing though, is that, you know, I was told that it wasn't severe. And I was even told that by the head doctor at the ultrasound facility, but I believe that he told my midwife a totally different story.

[00:06:58] So when she explained it to me, in her words, it sounded like it was something extremely severe. And, what wound up happening is, fast forward, she wound up dropping the services, because her fear was that, you know, there could be a risk if I gave birth to a child with a cleft at home.

[00:07:22] So hearing that, you know, that really broke my heart. but again, I was really adamant of, I don't wanna, I don't want to go to the hospital. And, so when she hung up the phone with me, you know, I cried, because that was my dream. My dream was to do a home birth.

[00:07:38] So once we went to the same place again, to get an ultrasound, my husband, unbeknownst to me, I wasn't aware that he was going to ask the question, but he asked the head doctor, what was his take on home births? And to sum it up, he was basically against it. He was all for modern medicine. the modern medicine approach of, you know, giving birth to a baby in the hospital.

[00:08:03] And I believe that his personal bias may have had to do with his wording on how he explained things to my midwife.

[00:08:13] Lisa: Exactly what I was thinking.

[00:08:15] Amayra: That it's why she dropped the services. So, yeah, I was really upset by that. So luckily she did give me other referrals to other places. So I went to Village Maternity.

[00:08:28] They actually do have two locations, so one in upper Manhattan and one in Greenwich village. So if anybody is looking for strictly midwife services is the one in Greenwich village that provides that service, the other one in upper Manhattan, they don't offer that.

[00:08:44] Lisa: Well, that's good to know that, this medical condition didn't necessitate while it did mean the recommendation was to be in the hospital. It didn't necessitate having to work with an OB if you didn't want to, if you still wanted that midwifery model of care. So I'm glad to hear that.

[00:08:59] Amayra: Yes. So I was, I was still happy about that. I mean, they only think if they don't come see you, we do have to go to the facility to be serviced.

[00:09:08] Lisa: Big difference.

[00:09:09] Amayra: So yeah, that is a big difference. But you do still feel that, one on one personal care, even though, you know, they were busy. when they greeted you, you felt that, you know, you had that relationship still. So that's what I still enjoyed about it. you still had that one on one care where, you know, he felt like, you know, he wouldn't be, basically cared for. So that's what I enjoyed about it. but again, the only downside you have to go down.

[00:09:39] Lisa: Do you mind my asking when you chose your home birth midwife, did you seek out specifically a Black midwife? Because I know some people prefer for their care provider and or maybe their doula to have that shared experience as a person of color, but then others don't really. So did that play in at all to the dynamic of who you chose?

[00:10:00] Amayra: Oh, actually it did, I did pick a Black midwife; not because I had any personal bias against anybody else of another race, but I just wanted, you know, have someone who I could relate to.

[00:10:13] Lisa: Yeah. It's very understandable

[00:10:16] Amayra: I just wanted someone who I could relate to. Oh, and I also did seek out a doula. So she did give me a listing of doulas that she'd worked with and she recommended. So I did choose one from her list and she was amazing. I believe from what I remember she did like three home visits. She did ask a lot of questions. Things like things really are deep & personal. Like, you know, if I was ever involved in any sexual assaults or anything like that. And if you do wind up having a doula that asks those questions, I would say be honest. It's not because they're just trying to be nosy, but surprisingly, from what my doula told me is that she's had experiences where a woman was giving birth and all of a sudden that trauma of being sexually assaulted comes in and interferes with the pregnancy [ labor].

[00:11:07] Lisa: Yes.

[00:11:07] Amayra: So I would say again, if you were a victim of sexual assault, Definitely, you know, be honest with that. It's not like she's going to take that information and go, you know, disclose it to anybody else.

[00:11:19] Lisa: Oh yeah. It's definitely confidential.

[00:11:21] Amayra: So, once you do disclose that your doula can probably give you some steps on what you can do to, As far as coping mechanisms on what to do, if that's stuff does come rushing back during actual labor. So she was really amazing. her name is, Azuri Jenkins. So it's A-Z-U-R-I, last name's Jenkins. If anybody wanted to seek out her services.

[00:11:46] Lisa: I'll be sure to put her information in the show notes. Thank you.

[00:11:51] Amayra: So she was great. So I guess fast forward to actually, in, in labor, I would say a few days before I actually started the labor, I did get sick. but I didn't, I guess I didn't associate that with, hey, that's a sign that the baby's coming. I remember just being at the front desk at my job and my coworker that sat next to me. She felt sick and she had to leave early that day. And then the next day after I came from my checkup, when I left there, then I started feeling sick and I'm thinking, okay, well maybe I got this from my coworker. So I'm not really thinking anything of it. So I just wanted to know the thing of fever and nausea, went to bed, hoping to sleep it off. the next day I had to do an ultrasound. Oh, I forgot to mention that Village Maternity's partnered with New York Metropolitan. So the reason why they partnered with New York Metropolitan is because, Metropolitan's labor floor. They're not busy. So for anybody who's looking to actually take their time and not be rushed, you know, go into labor then definitely that option is for you because you can basically take your time.

[00:13:05] Nobody's, you know, no staff was running in there. Like, do you need an epidural? Do you need pain medication? they're all for, whether you decide to do epidural or medications, or if you don't, which I didn't, I chose not to do epidural or any type of medication. So I didn't have that pressure on me.

[00:13:25] So yeah. So if you don't want to be rushed, New York Metropolitan.

[00:13:28] Lisa: Yeah, birth professionals. We all call Metropolitan and underutilized gem because it really is one of the only places that's not overcrowded

[00:13:36] Amayra: So that morning I still went to the ultrasound at metropolitan.

[00:13:40] I still didn't feel good. So I told the ultrasound tech, and she said, you know, if you're still coming this way, you know, tomorrow then come into the hospital. So Sadie comes in sort of feeling okay. And then next, you know, I just know that I fall asleep, wake up and I'm just in a pool of sweat.

[00:14:02] I never knew that there was an actual literal term of, I woke up in a pool of sweat. So, yeah, I remember I woke up in a pool of sweat. By Sunday, I was okay. So Monday comes and I decided not to go into work, you know, just in case. So Tuesday morning, one o'clock in the morning I did my bathroom routine.

[00:14:23] Like I usually do. I didn't think anything of it. So I started feeling contractions that I never felt before. So I'm thinking, okay, well, this is new. Maybe within the next few minutes, the contractions coming again. So I just whipped out my contraction app and, my contraction app confirmed that, you know, your contractions are five minutes apart -- you gotta go to the hospital.

[00:14:50] So I'm like, Oh my gosh. I'm like, no, I'm like, this is too soon. So I think Nicholas was scheduled to be born, I believe it was January 14. So it was January 7th that, you know, the contractions came in.

[00:15:05] Lisa: Okay. So you're 39 weeks at this point. Okay.

[00:15:07] Amayra: So I'm thinking, Oh my gosh, this is really happening. So, I waited a while before I woke up my husband.

[00:15:14] So before I did that, I called the head midwife and she said, "yeah, definitely go into the hospital." I had to go in a little earlier because I had no what it's called, where they find the, the bacteria in your vaginal canal.

[00:15:29] Lisa: GBS.

[00:15:29] Amayra: Yeah, so I had the GBS and so I had, it was recommended that I go in, you know, an hour or two, ahead so that they can actually give me the, Oh, what do you call them?

[00:15:39] Lisa: Antibiotics.

[00:15:40] Amayra: Yes, antibiotics.

[00:15:42] Before the baby came out.

[00:15:45] Lisa: They wanted you to, to come in before your water even broke?

[00:15:48] Amayra: Yeah. Just so that they had time to administer the antibiotics. So once I told my husband, he wasn't even packed. Even though I told him like, you know, a few days I'm like, listen, you got to pack up some stuff, a hospital, we gotta be ready.

[00:16:03] So yeah, so I was already packed. I only had like a few things to bring, to put away, like, you know,what is it, my charger for my phone and whatever other things that I use on a daily basis.

[00:16:15] So yeah, so him, he just took out one of those big blue Ikea shopping bags and just started dumping things in there. And I just looked at him like he was crazy. So, so, we took a Lyft and, what is it? So once we got there, they put me in a room where they checked, how far I was dilated. They also took the baby's heartbeat to make sure everything was okay.

[00:16:42] And I believe about maybe an hour, hour and a half. That's when he put me in an actual labor room. So by that point, that's when the contractions were really getting more and more intense. Man, the only way that I can describe contractions is it's like menstrual cramps, but just on a different level, that's the best that I can describe them.

[00:17:08] So they were to the point where once the big contraction came, like I just, I couldn't talk. you know, so I don't, my husband, it was funny. Cause I remember in the class and said, you know, when your wife is like that, don't talk to her.

[00:17:23] Lisa: That's right.

[00:17:25] Amayra: That just went out of his head and he was trying to have a full-blown conversation with him, I was like, "Don't talk to me!"

[00:17:32] Lisa: They mean well, right?

[00:17:34] Amayra: Yeah, he meant well he was, he did the best that he could, but just that one thing, don't tall to me, really, don't talk to me. I can't respond to you. So, he went out, during the time that I'm having the contraction, they go out to, like a food vendor that was really out there, I guess, really late at night, and got some fruit. I had my bottle of water.

[00:18:00] Lisa: So this was pre-pandemic, right? You just beat it?

[00:18:03] Amayra: Yes, this was in January.

[00:18:08] Lisa: The reason I said that is because during the pandemic partners, haven't been allowed to go anywhere once they come in with the laboring person. I think that's starting to change now, here in September is when we're recording this. But yeah. So yay. Glad you beat the pandemic and all the complexities that came with it.

[00:18:25] Amayra: So he gave me, so I think I munched on like a banana or something and drank my water. Staying hydrated is like the best thing. Definitely drink your water.

[00:18:36] Lisa: Do you remember how dilated you were or effaced from when you first checked in in triage?

[00:18:41] Amayra: So I think when they checked me at that point, maybe I was at four like the dilation.

[00:18:49] It was slowly progressing. So I know we got to the hospital maybe around, I want to say 2:30 in the morning. So while I'm in the labor room, the contractions are getting super intense, my doula is coaching me through breathing.

[00:19:04] But every time that hard contraction came, it's like, you know, my body on reflex, just that breathing at that point. It's not because I didn't want to breathe. It's just, it was reflex. Like, augh, I can't breathe.

[00:19:17] Lisa: Yeah, sure. Yeah. We tend to hold our breath when things are uncomfortable. I might have missed it. But did your doula meet you at the hospital? Or come to your home?

[00:19:25] Amayra: Yeah, so I texted her to let her know that it's time. So she met us at the hospital, or no, she actually did make it in before they put me in the labor room. So she came in on time and, she was guiding me through breathing.

[00:19:40] She also gave me, like a cotton ball with lavender to smell. So that helped too, you know, help you forget about the contractions. She also did the, the counter pressure. Method, which was really helpful. She did have me sit on a yoga ball and bounce around, but that one really didn't help to ease much of anything.

[00:20:02] Lisa: Sometimes that can strengthen your contractions. So it doesn't always feel great. Sometimes it feels great. Sometimes it doesn't because it makes things more intense.

[00:20:12] Amayra: Yeah. So, what also helped me was walking around. They did have me attached to a monitor, but the good thing was I was allowed to walk around in the labor room.

[00:20:21] Lisa: So you were attached to a monitor where you attached to an IV all the time or no?

[00:20:26] Amayra: Yeah, I was attached to the IV and, they were also monitoring the baby's heartbeat still.

[00:20:32] Lisa: And when you said counter pressure, were there specific areas on your body where your doula was doing counter pressure?

[00:20:39] Amayra: She did the counterpressure on my buttocks area

[00:20:43] Lisa: Probably the double hip squeeze?

[00:20:45] Amayra: So that really helped out a lot. I believe she also did the other method. I forgot what it's called, where she puts the wrap. Around the belly.

[00:20:54] Lisa: Rebozo, mm-hm.

[00:20:56] Amayra: So she did that too. So that really helped out a lot. So that helped alleviate the pain. What also helped was actually holding my husband's hand every time the hard contraction came. So that was a good distraction. Also, kind of my own like, revenge, like, "This is what you did to me!"

[00:21:15]"Lisa: That's so funny. I always say in class, you probably won't say that, but now that I suggested it, maybe you will. Sometimes we need that release of that blame. Right. This is what you get for also, like, speaking to me during a contraction, right?

[00:21:34] Amayra: Yeah, that too, yes. I had to, I had to get him somehow. So that was. That was my revenge.

[00:21:42] Lisa: I love it.

[00:21:44] Amayra: And then, so, I think I had, I had the urge to use the bathroom, so I did. So I did the first time, but every time after that, it was basically a false alarm.

[00:21:53] I didn't have to go. But it just felt like I did. So the contraction that I had in the bed. I just decided: okay. I'm not going to the bathroom, but then I felt like a leak and I'm thinking, Oh my goodness, I urinated on myself. So I just felt embarrassed. So when I got up and looked in the mirror, in the bathroom, that was my bloody show.

[00:22:15] So I'm like, "Oh crap." So they had to give him a new gown, and, went back into the bed and the contractions are getting more and more and more, more intense. And then by this time, I believe then my water broke. And, my doula had me get into a position where I'm basically like facing backwards on the bed, but I'm in a kneeling position with my legs open.

[00:22:45] So yeah, that's the other good thing about NY Metropolitan. You know, if you want to assume a different position other than the traditional laying on your back with your legs open, you can do that. So, that's the other good thing about it. So like I'm in that position. And, so my doula tells me push, like, you know, you gotta take a dump. So I start laughing.

[00:23:08] Lisa: Yeah.

[00:23:09] Amayra: So I go ahead and, and I go ahead and push. And, well, I was when I felt ready. cause I don't want to confuse any listeners like, Oh, you know, you just got to start pushing when you're not ready. Your body will tell you when it's time to really push. And they'll also instruct you through it as well.

[00:23:29] So when the time came to push I pushed a few times, and by this point I'm tired. And eventually I did feel the ring of fire. And by that time I'm super, super exhausted and I'm to the point where man, I don't even want to do this. I don't want to push no more, but, you know, I mustered up whatever strength I could.

[00:23:51] And, I finally pushed about two or three times and he was out.

[00:23:58] Lisa: That's pretty quick for a first timer. That's very impressive.

[00:24:02] Amayra: Well, it was because I think, like I said, we weren't in there by 2:30 and Nicholas came out at like 10:25 in the morning. So I guess, you know, that was pretty fast. But also some of the things that did help is visualization.

[00:24:19] So I just visualized my cervix opening, you know, very easily. you know, I kept saying the affirmation to myself that you can do this, your body is meant to do this.

[00:24:32] Lisa: Did you ever need a reminder from those around you? Did you ever doubt your ability and most of us, at some point we'll kind of start doubting it, but maybe you didn't. I don't know. I'm just curious

[00:24:42] Amayra: I actually didn't but having to doula there, as far as being beneficial, was just her helping to coach me through the pain. Well, no, actually I did have doubt. I'm like, you know, like when the contractions did start getting more and more intense, I'm like maybe I should've taken the epidural.

[00:25:02] Lisa: I'm betting you were probably like eight or nine centimeters when that happened. Cause that's the most common time for people in transition to be like, uh, just kidding. I'm not sure I can do this. Usually we're really, really close.

[00:25:16] Amayra: Yeah. That's when I started thinking, okay, well maybe I should have taken the epidural. Not because I believe I couldn't give birth to the baby. It was just something to alleviate the pain that's it. So, yeah, the pain was intense, but I think after delivering Nicholas, I forget about the pain. It's like, you know, it was like the biggest sense of accomplishment.

[00:25:39] That's the only way I could describe it. Cause it's like, you know, I think if someone were to ask me, Oh, you know, would you do that whole thing again? It's like, yes, I actually would. I really would, pain and everything because, I believe that with modern medicine we've been duped into believing that our bodies don't have the capacity to give birth naturally. We've been scared whether it's seeing Hollywood movies, like my water broke. I had the baby, you know, and you're turning into this monster because you know, you're in so much pain, but I think they really overexaggerate. yes, you are definitely gonna feel pain, but I don't believe that with modern medicine, it should trick you or make you feel bad that, you know, as a woman, you're not giving birth at a certain time. And I mean, I think that's the messed-up thing with modern medicine is that you're basically on the clock that, you know, if you can't deliver this baby on your own at this time, we're just going to have to interfere.

[00:26:44] And that's what I was really appreciative about at Metropolitan is that there was no interference. It wasn't like, okay, is the baby here? You know, come on, you know, you need to hurry up or oh, you want an epidural? Oh, you want to get a c-section? You know, there wasn't that constant interference.

[00:27:00] Lisa: Yeah. And you aligned yourself with care providers who trust the birthing person's ability to do this and have a very hands-off approach. They'll be hands on if needed, right? But, but like just a very patient hands-off approach and only if we need to do that, jumping in. That's so great that you didn't have need of that.

[00:27:20] Amayra: Yeah. I was really adamant. I said, "no, I don't want this, you know, the epidural, I don't want any drugs. Don't give me anything I want to actually, really experience this. Not to, you know, if there are any listeners that plan on, you know, you want the epidural or any type of, pain medication, you know, you feel that's right for you then that's okay. But you know, the journey that I wanted to take for it is I didn't want to be medicated at all. I wanted to actually really experience it.

[00:27:50] I had that same feeling when I gave birth the first time of, yeah. wanting to be an active participant, knowing that my baby had to be an active participant. Didn't really have a choice in the matter, you know? for some reason that really held meaning for me in a way that, for others, it doesn't really hold that same meaning. Yeah.

[00:28:07] I didn't want to have to rely on any medicine to actually, like I said, for me, I felt confident enough to believe that my body is meant to do this. and my body's meant to do this, then I technically should not need any kind of medication to help me get through this.

[00:28:25] So yeah, like I said, once he came, it was the biggest, you know, sense of accomplishment. And I also, I believe was during my pregnancy journey, I didn't want to know the gender of my baby, but, I did get a lot of pressure, like, Oh, why don't you want to know the gender of the baby? And for me it didn't make a difference.

[00:28:43] You know, whether I had a boy or girl, and I think even if I did have a preference, you know, if the baby ends up being the gender that I didn't have a preference for, what can I do in that situation? So for me, I didn't want to know, but you know, my husband confirmed, you know, I gave birth to a boy. So once he did come, it was confirmed, he did have a cleft, but like the ultrasound technicians were saying, it wasn't severe.

[00:29:10] So knowing that, you know, he did have the cleft, it didn't bother me, you know, for me, Seeing him, you know, I was happy to see him finally, you know, I, I loved him, once I saw him. And so the cleft didn't really make a difference to me. you know, cause he's my baby. So, as far as the cleft, there wasn't any real struggle, as far as dealing with it.

[00:29:37] Cause again, wasn't severe. So, he breastfed fine. He latched on fine.

[00:29:42] Lisa: That's what I was going to ask, great. Great.

[00:29:44] Amayra: So there were no issues with that. usually they say that children that have clefts, they may [have] some type of leakage. I can go when they drink it might come out of their nose; he didn't have that issue.

[00:29:56] I believe they also said that he might suffer problems, like, hearing problems when they did do the hearing tests. Once I gave birth, he was fine.

[00:30:05] Lisa: Do you mind, sharing -- if you've gotten this far, I know it's just been a few months since you gave birth, but did they yet give you kind of a timeline of any kind of treatment or surgery that he might need?

[00:30:17] Amayra: Oh, so yeah. So I got a referral from the head midwife to a surgeon and I did reach out to one of the surgeons. He's a Black surgeon. So again, for me, that was huge because you don't really know that there are surgeons of other races out there. Especially for someone like me, I'm like, Oh, a Black surgeon, definitely.

[00:30:42] Lisa: It makes so much sense to me because there's already. No matter someone's color, just going through medical school and going into the medical system. There's so much history and systemic racism there that if I was Black, I would totally want it to have Black care providers, just to hopefully give myself a chance that there's going to be less racism built in, I'm glad that you found somebody you're feeling well-aligned with, maybe? So, go ahead.

[00:31:07] Amayra: So we first saw him, I want to say it was like the end of January or maybe the beginning of February.

[00:31:13] So he's in his assessment of Nicholas and, he said no, and he confirmed again. It's not a severe cleft. He said that he was looking towards doing surgery around April. So I had to, get them at whatever weight that he wanted Nicholas to be at by the time of surgery came, I think he said he needed him to be at 10 pounds and up cause I believe when he first got there, he was at like seven pounds.

[00:31:44] So he needed him to get to at least 10 and up in order to be able to do the surgery and he gave us these, these nasal hooks. I know that's not the proper term for them, but, one of Nicholas's nostrils because of the cleft was, not caved in, but it was kind of like a slightly pushed in a little.

[00:32:03] So it wasn't a perfect oval nostril. So he needed that in order to, I guess, make the surgery process a little easier. So we had to put the nose hooks in like every day, just to shape his nostril. So of course, once the pandemic thing came in, the surgery had to be pushed back.

[00:32:25] So he didn't get his surgery in April. He didn't get it until around like the end of May.

[00:32:32] Lisa: Did they explain at all what the rationale was for the timing of the surgery? I mean, originally when they were recommending that it'd be done in April, did they explain it all? Like, this is why we want it to be done when he's so young?

[00:32:46] Amayra: So the reason is the healing process. Babies heal, surprisingly, much more quickly. So yeah, so that was the main reason and the reason why they do it so young is because babies heal very quickly. So for anybody who might have a child with deformity that may need surgery, you know, if they are recommending that it be done while the child is still an infant, then I would say definitely take it into consideration because mainly the reason is that babies heal very, very quickly.

[00:33:18] Lisa: So then probably the delay that happened because of the pandemic, wasn't like significant enough to, for that factor to be affected.

[00:33:25] Amayra: No. So once the surgery day came, I had to stop feeding him. I know for sure at like five in the morning, because he was scheduled to have surgery and like 11:40 in the morning. So I had to stop feeding him. And I think I had to stop giving him liquids after seven o'clock in the morning. So when we got there, we went through the whole process of I have to be scanned to make sure I didn't have a fever.

[00:33:51] So by the time we got to the floor where the surgery was going to take place, the surgeon was running behind because he was conducting a surgery prior to Nicholas's. So that surgery was taking a little longer than expected. So Nicholas wasn't, I guess surgery didn't take place until like three in the afternoon.

[00:34:13] Luckily, he was good, but then he just started getting antsy. Because basically he didn't eat anything since five o'clock in the morning. So I had to do whatever I could to keep him entertained, to keep him...

[00:34:26] Lisa: I was thinking without any delays, I was thinking was he like super cranky because these babies like to eat frequently.

[00:34:33] Amayra: Luckily he wasn't. Anytime I got, like the signal that he was about to start crying, you know, I would pick him up and just start bouncing him around. And that would distract him. So he was okay. So once he got put in surgery, the surgery took about three hours and, for me, I felt confident in the doctor that he was going to do a great job.

[00:34:55] So for anybody that does have to do any type of surgery, I believe he may just specialize in clefts, but he might specialize any type of cranial deformity. He works at Columbia Presbyterian. So his name is Dr. Thomas Imahiyerobo.

[00:35:13] So he's a very, very good surgeon.

[00:35:15] Lisa: Great. Once I get the name from you, I will be sure to include that in the show notes. Thank you. And were you able to be in the OR?

[00:35:22] Amayra: No, that was the only thing I couldn't be in the OR. And by this point, it couldn't be me and my husband, because of the pandemic. Only one of us was allowed to be there.

[00:35:32] Lisa: Even like at the hospital at all? Probably. Yeah.

[00:35:35] Amayra: Yeah. So it was just me. Which is more, understandable. Cause I was I'm breastfeeding. I really gave him a bottle. So it made sense for me to just be there with him. So,

[00:35:50] Lisa: How did that feel for you emotionally, if you're comfortable sharing that?

[00:35:53] Amayra: Emotionally? Like I said, during the surgery, I was fine, you know, I had confidence that the surgeon was going to do a great job. What I wasn't prepared for was seeing him once he started getting, once the anesthesia started wearing off he was making these noises that, that I, I wasn't used to hearing.

[00:36:14] And, he had the, adhesive on his, upper lip, well the upper area. And, he just looked like he was in a lot of pain. And I felt so bad because, as a parent, you naturally want to be able to help your kid to stop crying. And there was really nothing that I could do at that point.

[00:36:32] Cause once they transferred us into the room that he would stay in overnight, that's when he got really bad. Once the anesthesia wore off. He was crying hysterically. I, like I said, I, it was nothing that I could do. The only thing that could ease him was giving him pain medication, which I believe, the nurse, she gave her mom oxycodone, to alleviate the pain. And that helped him, you to sleep a bit.

[00:36:58] Lisa: And I assume post-op that you weren't able to bring him to the breast for a while, yeah?

[00:37:04] Amayra: Yeah. I couldn't do that.

[00:37:05] Lisa: And that would have been so comforting; that's gotta be hard for both you and baby. I would think?

[00:37:10] Amayra: Well, I didn't realize how hard it wouldn't be for me until I went a few days without breastfeeding him. Like, I didn't realize how much I love breastfeeding him because for me, it's, it's a bonding moment, me and the baby. So I didn't realize how much I missed it until I went a few days without actually doing it. Because him, he was, he was cranky. He wasn't trying to drink from a bottle or anything like that.

[00:37:40] He wanted fresh. And, of course, I couldn't provide it to him. So, for me it was heartbreaking. You know, cause like I said, for me, breastfeeding with him was a special moment.

[00:37:52] Lisa: Were you just exclusively pumping for a while or did you stop breastfeeding at that point?

[00:37:56] Amayra: I did have to pump for a while and then once it got, ‘cause I think I went 2 weeks straight without breastfeeding him because I had to wait until that glue above his lip came off before I could actually start breastfeeding. So that took maybe about two weeks before I can actually breastfeed again. So during that two weeks span I was pumping, but because I wasn't feeding him as often as I was accustomed to, my milk ducts eventually stopped producing.

[00:38:29] So once I was able to breastfeed again, to start triggering my milk ducts, actually started producing milk again, but I set like a timer, like every two hours just put him on the breast.

[00:38:43] Lisa: Make up for lost time.

[00:38:47] Amayra: So that's why I did to just get my milk ducts producing milk again. So eventually, they did. I think it took like a day and a half, for it to come back. So I was happy.

[00:38:58] Lisa: It's nice to hear your body was so flexible and like, "okay, we're doing this now. Okay." Nice.

[00:39:06] Amayra: So, yeah, he does have a scar, so I have to apply a cream to minimize the scar.

[00:39:12] But, before and after, I think before the surgery, I did say that I would miss the cleft. Because it's basically part of him, you know, that it was what he was born with. But, I know that, living in a very, I guess, vain world, you know, having a cleft wouldn't be acceptable.

[00:39:31] So he looks great with the cleft. It looks great without it. So for me, I'm glad that the surgery went really well with him. He's just a really happy bouncy baby. He did heal very, very fast. So they weren't lying when they said babies heal very fast.

[00:39:48] So he really did. I think what I did when we first got home, they did recommend I was prescribed, the oxycodone and Tylenol, to help out with the pain. So we did the surgery on Wednesday. He got home on Thursday and, I was administering the pain medication to him, I think by maybe Saturday, Sunday, he really wasn't in any pain. So I didn't have to worry about giving him the oxycodone or the Tylenol. I just had to administer the antibiotic. I think I only had to administer that for like a few days.

[00:40:24] But, yeah, that was the only thing I had to worry about administering. Cause other than that, he was fine. So yeah, the only thing that he got cranky about was still that he can't breastfeed, but other than that, that was about it

[00:40:38] Lisa: Nice. Well, it sounds like, as a surgical procedure goes, it was a relatively uncomplicated journey through that.

[00:40:45] Amayra: Yeah, it was. So what I would say though, is I believe that he probably will have to do another surgery again because of how the top gumline took shape. So there is a part of his gumline that's a bit off. So, the surgeon did recommend that they'll probably look into it and, if they feel that surgery needs to be done, he'll get that done when he's a little older.

[00:41:09] Lisa: So is that somewhere where he goes annually or how frequently to have that checked?

[00:41:13] Amayra: I'm not sure. The only thing that we're doing followups with is the scar, just to make sure that the scar is healing, the way that it should be healing.

[00:41:22] Lisa: And did they, have you doing any scar massage?

[00:41:25] Amayra: Yes. So whatever, cream that he recommended us. It's recommended that while you're applying it to massage the scar.

[00:41:34] And, usually with that, it's a little difficult at times because we need to give him like a toy to distract him. cause I don't know, if us massaging is painful for him or he's just irritated, like, "Oh, get off my face. Like, what are you doing?" I don't know. I don't know which one it is.

[00:41:50] Lisa: Maybe a little of both.

[00:41:53] Amayra: So I have to give him something to distract him while I massage the scar.

[00:41:58] I mean, overall I would say that I guess the situation with the cleft, it wasn't severe. But I'm sure if there's anybody that will listen to this podcast where the baby's having diagnosed with something severe. So I can't really give any advice as far as how you should handle it emotionally. The only thing that I can recommend is, just, you know, love your baby, and the other thing that I can suggest is possibly, since we live in an age of information, get on sites like Facebook or Instagram, that really have groups that cater to whatever it is that your child will have because when you hear that you thinking, Oh no, I'm going through this alone. When you know, you'd be surprised that there's a lot more people out there that are going through what you're going through. So it's best to have that support system. If you can't find any groups that cater to that then make your own group.

[00:42:56] Cause again you'd be surprised that there's probably many parents out there that are experiencing that. And, actually, statistically in this country, kids with deformities, I was shocked by the statistic. It's one in 33, which is really shocking. So, so, yeah. So again, if you're, if you were going to have a kid with a deformity, look for that support.

[00:43:20] Lisa: Yeah. Thank you for sharing that. I was going to ask you if you had specific resources that you found helpful. So for you, has that been finding a Facebook group or two that's helped you or books or websites, anything in particular?

[00:43:34] Amayra: I didn't really need the support system, honestly, because again, it wasn't severe. I think if, if it was a lot more severe, where let's say we're having some issues maybe we personally didn't understand or that we couldn't handle then yeah, I would have definitely, sought out like a Facebook group or an Instagram group, just to help, to cope with what it is that I'm going through. I didn't feel the need to seek it out. Cause like I said it wasn't something that was, I guess, overwhelming or it didn't really interfere with, I guess our livelihood or anything like that. I don't know if that's the right word.

[00:44:13] Lisa: Yeah, no, that makes sense. Yeah. Everybody's different on this. I mean, some people might have gotten the diagnosis that you got and been really scared, you know, because it's just new and needed that community, but it's great that you didn't feel as much of that need and that you just kind of really took it in stride.

[00:44:30] Amayra: Well, for me it was mostly, I will admit like throughout the whole pregnancy, when they were telling me, "Oh, maybe it has a possible cleft," I was just in denial the whole time.

[00:44:40] Lisa: Oh, that's right. You said that at the beginning, little denial goes a long way with certain things. It does make sense that --why get too stressed about something when you don't know fully exactly what the situation is until you meet your baby?

[00:44:57] Amayra: Exactly.

[00:44:57] Lisa: You think that was part of it?

[00:44:58] Amayra: That was the mindset I was in. I said, "You know, we don't know for sure." And I didn't want to go through this whole pregnancy being stressed out, with the unknown. So why not just wait until the baby's here to really assess the situation? So that's where my mindset was at when it came to that.

[00:45:20] ‘Cause I didn't, I really honestly didn't want to waste time being stressed out for nothing, or just stressed out about the unknown.

[00:45:28] Lisa: Yes. Such wisdom there.

[00:45:29] Amayra: So I just wanted to have a positive mindset throughout the pregnancy. So I didn't want that factor to weigh in on how I was dealing with my pregnancy.

[00:45:41] Lisa: That's beautiful. Thank you for sharing that. Cause I think there's some real wisdom there. Truly. Is there anything that you haven't gotten to share, about your postpartum journey, or anything else that you haven't gotten to share yet that you'd like to share before we close things out?

[00:45:56] Amayra: So postpartum journey...I would say before you have the baby, make sure that you do have some sort of support system, even with this whole pandemic thing going on. I think it is beneficial to still have a support system, because...and this goes for all women, but, for me, Black women specifically, we have this stigma tied to us of being a strong Black woman.

[00:46:24] And it's like, with that phrase, it doesn't really give us permission to be vulnerable. And I think that for any Black women, it's okay to be vulnerable in that state, you know? And again, this was for any woman that feels that kind of pressure of like, "I've gotta be supermom. I got to be the most amazing mom ever."

[00:46:48] And it's okay. You're you don't expect yourself to be supermom, you know, tell that side of you, listen, go, go sit down somewhere, relax, it's okay that we don't have this all together. We'll get there, but right now we don't have it all figured out and that's okay. So just have that support system ready just in case if you need it. Cause I mean, there will be times when you might be one of the few lucky parents where your kid falls asleep all night throughout the night, but not many of us are that fortunate. So for those who aren't fortunate, unfortunately, you are going to have basically many nights of lack of sleep. they do say sleep when your baby sleeps. But for me personally, that was very difficult because I'm not the type of person that can fall asleep on command. For me, I have to really get into the mood to actually fall asleep. So when he was sleeping, I couldn't sleep.

[00:47:49] So I had to find other ways to keep myself occupied. And of course, that did really mess with my mental state and all, because with lack of sleep, you're tired, you get more irritated, bless my husband's soul. I was, he, was he getting it.

[00:48:10] I was lashing out at him, I really was. You know, like I said, bless his soul for being patient with me. But the good thing I would say that I do have family that's open to just watching him whenever I need that break.

[00:48:27] Lisa: That's golden.

[00:48:29] Amayra: So like I said, if you haven't already, before the baby comes, I would recommend have a support system ready.

[00:48:35] I won't doubt that family they're going to all want to watch the baby. Like once the baby is born, they're not even going to care about you, babe. It's the baby.

[00:48:44] Lisa: Right? It's all about the baby.

[00:48:46] Amayra: Yeah. It's all about the baby, it's not about you. Definitely take advantage of that with any family members or any friends that you personally trust. If you feel that you trust them in your baby in your care you, ‘cause you are as if you're going to have those days where you just need a day to yourself.

[00:49:03] Don't think that you can just handle it on your own without any assistance. because you are not only hurting yourself, but you can put yourself at risk and also hurting your baby. So don't think that you can handle it all by yourself. Ask for the help, asking for help is not a sign of weakness. Just ask for it. I would also recommend for, the expecting mothers don't expect your significant other, like, whatever you expect of your significant other, actually communicate that with them.

[00:49:36] Lisa: Oh, that's so good.

[00:49:39] Amayra: Don't don't think, oh, he or she, they're going to do this

[00:49:42] Lisa: Never assume!

[00:49:47] Amayra: You will be highly disappointed. I'll also add stress to your labor, so. So actually communicate. I would say even though me and my husband did take the class with you and you know, you did go over the different, what is it? Pressure things to help alleviate pressure and things like that... because of his work schedule, we didn't even have time to practice any of it because he would come home at crazy hours of the night or he would just come home and just be dead tired. So luckily I was fortunate enough to have a doula in place to help out with that. So, you know, if your significant other falls into that line where, you know, they come home from work, they don't want to know anything about counterpressure, anything 'cause they're tired, have a doula, because that's gonna really help with, you know, the doula coming in and help relieving, alleviating any type of pain that you feel, because your significant other, if you guys haven't been practicing anything, you're not gonna really know how to, maneuver and help alleviate whatever pain or pressure that you're going through.

[00:51:02] So again, communicate. Whatever expectations you have from your significant other, just sit down with them and say, "Hey, listen, this is what I need from you at the time when it's time to have this baby, and if they feel, and I would say with the significant other receiving this information. If you personally feel that, "okay, well maybe I think I would be good at that," then just be honest, don't say, "Oh yes, definitely. I'm going to be there for you a hundred percent. And then when the time comes you can't deliver.

[00:51:34] Lisa: Yeah. That's not good. Yeah.

[00:51:38] Amayra: Yeah, so actually communicate. So don't have this expectation that your significant other is going to be this super amazing, awesome person.

[00:51:46] That's gonna know what to do. Cause they're new with it just as much as you are. So don't expect that from them. And, I know there's probably women out there who have heard horror stories about other women's birth. Don't attach yourself to that.

[00:52:04] You know, they've probably just been willing to share, you know, out of excitement, as far as the experience that they personally went through, as far as their birthing experience. But don't let their birthing stories scare you into believing, "Oh, okay. Well, is that going to happen to my birth? You know, my gosh, I don't want that to happen. Just think positive about your birthing experience and how you want to visualize your birthing experience.

[00:52:31] I would say if you have a, my plans, as far as how you want to raise your child, what you want to feed your child and if you share this with family members or friends, they might think you're crazy and they might sway you into thinking, okay, well, that's, I don't think that's the right path that you should take.

[00:52:48] I would say, "This is what I want for my child." Don't allow other people's opinions to sway you into thinking that what you want for your child isn't the right thing.

[00:52:59] Lisa: Yeah, because everybody's got opinions, right?

[00:53:04] Amayra: Everybody's an expert.

[00:53:07] Lisa: But you, as you're saying, I think you are your baby's own best advocate, you know? And you are the one who knows them best and who knows the best for them. So I love this. These are such rich pieces of wisdom you're giving like so many more than we usually get per episode. This is like a goldmine. Thank you.

[00:53:26] Amayra: Oh, and then also the most important thing: don't expect everything to go as planned. You know, cause it's not, most likely the room you are going to definitely have some disappointments where you expected something and it didn't happen

[00:53:41] Lisa: Like your home birth needing to shift.

[00:53:43] Amayra: Yes, my home birth, finding out that my baby has a cleft. Cause I mean, we all expect to give birth to a healthy baby. We're not thinking there's a possibility of a deformity or anything like that. You know, we're just thinking oh, baby, baby's gonna come, they'll be healthy and all that.

[00:54:00] But then okay, well, this is what to expect when the baby comes, mentally, you're not prepared for that. You're just not. And I'm not saying to automatically expect the worst, as far as with the baby being born. But if you do get that, find a support system that's gonna help you cope with that emotionally. I think that's everything that I could think of.

[00:54:23] Lisa: This has been so, so great. I appreciate your taking the time and being willing to share your very personal journey into parenthood. Thank you so much, Amayra; be well.

[00:54:35] Amayra: No problem, be well as well and stay safe.

[00:54:37] Lisa: You too, take care. Bye.

[00:54:39] Amayra: Bye.