Today we’ll talk with Dr. Carl Weiner, MD, MBA
He has been working on developing testing that can PREDICT PREMATURITY and EARLY ONSET PREECLAMPSIA as early as 12 weeks into the pregnancy.
*If it is detected, WHAT can be done?
*What are his hopes for the FUTURE of PREGNANCY
You can find Dr. Weiner here: https://www.creighton.edu/campus-directory/weiner-carl-p
Today’s guest is a clinical psychologist, whose mother passed away a few years before she had any direct experience of pregnancy. She encounters recurrent miscarriage, three in the first trimester, and then a pregnancy that progresses past the first trimester, only to be threatened with prematurity early in the third trimester and experience all of these challenging and transformative events are harder to manage without her mother. Now she’s focused on helping women who are going through or have gone through these major life events without their mothers. What follows is the first part of our conversation. Next Friday we’ll hear the rest.
To find Melissa’s sites:
Website: https://www.momswithoutamom.com/
https://www.instagram.com/momswithoutamom/
https://www.facebook.com/Dr.MelissaReilly
https://www.tiktok.com/@momswithoutamom
Enjoy Being a Mom Again Quick Guide: https://www.momswithoutamom.com/enjoy-motherhood-again-guide
Care For Yourself While You Care For Your Baby Guide: https://melissareillypsyd.lpages.co/bonding-with-baby-while-caring-for-yourself-opt-in
Schedule a complimentary coaching call: https://MelissaReillyPsyD-MomsWithoutAMom.as.me/free-coaching-call
How common is miscarriage
https://www.acog.org/womens-health/faqs/repeated-miscarriages
Audio Transcript
Paulette: Hi, welcome to war stories from the womb. I’m your host Paulette Kamenecka. I’m a writer and an economist and the mother of two girls. Today’s guest is a clinical psychologist, whose mother passed away a few years before she had any direct experience of pregnancy. She encounters recurrent miscarriage, three in the first trimester, and then a pregnancy that progresses past the first trimester, only to be threatened with prematurity early in the third trimester and experience all of these challenging and transformative events are harder to manage without her mother. Now she’s focused on helping women who are going through or have gone through these major life events without their mothers. What follows is the first part of our conversation. Next Friday, we’ll hear the rest.
Let’s get to her inspiring story.
Hi, thanks so much for coming on the show. Can you introduce yourself and tell us where you’re from?
Melissa: Absolutely. So my name is Melissa Riley, and I am from Lititz, Pennsylvania or that’s where I’m living is in Lititz, Pennsylvania and I’ve been here for 13 years.
P : Oh, wow, nice. Situate us in Pennsylvania. Where is that?
M : It’s the southern part. It’s in Lancaster County. So if you think about Amish country, yeah, that’s where I am and about an hour and a half west of Philadelphia.
P: Okay, excellent.
So normally, I asked people about their experience with their family and whether it affected their ideas about what they wanted in the future. And I know from our brief conversation before we started recording that the answer to this is already going to be yes. But usually I cast it in terms of like, did you have siblings did you know you want to have kids but but why don’t you tell me a little bit about your story?
M: Absolutely. So I was born into a family with a mom, dad and older sister and then 18 months later came my younger sister. And unfortunately my older sister was diagnosed with leukemia. And she, unfortunately in the 70s that was, you know, a terminal condition. And so my parents were needing to take care of her. Of course, unfortunately, she passed away at the age of seven, and I was only four. And then life went on and I was very close with my mom. She was a very strong woman larger than life, both physically and personality wise. Everybody knew her. And me and my younger sister were very close. And so I did always envision myself having a family and children. Well, things started to fall apart. I went to college and learned things that you know, my family wasn’t what I thought it was. And my mother and I had an estrangement that I know we would have worked through. But we had the estrangement about eight months prior.
P : Let me ask a quick question. Before you get to where you’re going here. Do you want to talk about my family wasn’t what I thought it was. Do you want to elaborate on that?
M : sure, sure… My mom, you know, both my parents, God bless them. Our whole life was impacted by the death of my sister after she died. We never talked about it ever. Death was something that I learned was so terrible. You couldn’t even talk about which of course isn’t true. But that was the underlying message that was passed along to me. And my parents didn’t mean to do that. It was just too painful for them. Right. So we never talked about it. And my mom became pretty depressed and my mother had her own history of some significant physical and emotional abuse herself. So she had a difficult time regulating her own emotions. So my parents corporate punishment, punishment was involved. You know, I became the overachiever. My little sister became the difficult one. Because, I mean, she had learning disabilities and ADHD and she was just talking to parents. And so things just weren’t as they see my mother was at, you know, a chain smoker, you know, overweight diabetic. Just didn’t take care of herself. She tried to but just, yeah, so became her own life shrink and just became, you’ll very inward, and he didn’t like what she did too bad. Then there were things that she did that I didn’t like, and it just, you know, in my mid 20s, we were butting heads about it.
P: Didn’t you become a psychologist?
M: Yes. So surprisingly, as the as the good kid and a family takes care of everybody else’s needs, and makes life easy for everybody else. Since life was very hard for us when we were young. Yes, I was very good at being empathic. I could sense anybody’s motion around me without anybody needing to say the words so it isn’t surprising that I became a clinical psychologist. And I went straight through college and graduate school was in the process of getting my doctorate when my mom died. But we had an estrangement eight months prior to her death. And so that complicated that factor even more,
P and had you you hadn’t repaired that before. She died? It sounds like
M: no,we hadn’t. It was right before I was graduating. And we had after eight months of not talking talk to twice before, in like the two weeks before she died. And I told her I had interviews for my residency. And so we had a cordial conversation, which was awesome. I mean, so I know that we would have repaired, you know, the injuries and, and all of that, but it just, we didn’t have the opportunity. She She died at 51
P : yeah that’s young. And that sounds pretty shocking for your family.
M: Yes, it was. It was very shocking. Yeah, I needed to be the one to go tell my sister. You know, she my sister, unfortunately, had pretty significant mental illness. She was bipolar disorder. One. She was in and out of hospitals. Since the age of 16. Pretty much she had some medical conditions herself, and then all sorts of substance abuse, but she was clean and sober for the last year. of her life. And we didn’t know because of, you know, her psychiatric conditions, it masked some pulmonary problems. And so, anyway, I’ll get into that in a second. But so my dad didn’t feel strong enough to tell my sister so I was living in Pennsylvania. My sister was living in Connecticut. My dad was living in New York. So first I went, got dad, and then we went to Connecticut and I was the one that had to tell my sister that our mother had died.
P: Wow,
M: it’s very difficult.
P: This this to the outside observer. Sounds like you’re doing a lot of mothering before being a mother.
M Oh, yes. It sounds like Yeah. Without a doubt, without a doubt.
P : And so this all sounds incredibly hard. And but but you walk away from this and say, I want a family of my own. Oh, my own kids.
M : Well, that’s not that’s gonna happen right away. Okay. Like I said, when I was young, I did and then later said, All this mental illness or this medical stuff, because my my younger sister died seven months after my mother did so. So the the man who was married to at the time was very adamant. is like, you can’t have kids we cannot continue this bloodline. Well, the the sad divorced him, but I really internalize that sense like, Oh, my goodness, my failing genetic gene pool. Is it awesome? Right? Lots of mental illness, lots of medical illness. So for the next number of years, I was like, Oh, I don’t know that I should have any children. So
P can I ask one probably naive question. Yes. How strongly do genetics predict mental illness?
M: considerably. There’s a significant correlation. Certain certain disorders are more highly connected with Jin genetics than others bipolar one being one of them. Okay. Yeah. But anxiety, depression, they all have a genetic component. So it’s similar like heart disease. So if your parent has heart disease, that doesn’t mean you’re going to get heart disease,
P: right
M: It just means that you’re more vulnerable to heart disease, and it will show up under certain circumstances.
P : Okay. All right. Fair. Okay. Keep going. Alright. So so the we are separated from the husband, he doesn’t seem supportive. And now we’re moving on. Okay,
M : we are moving on. My focus is on my career. I’m a clinical psychologist. You know, I taught you know, in graduate school to development, so I’m going along, you newly married, very happy and life goes on. And I realized I do want children and so we start trying and I’m in my mid 30s At this point, and I have my first miscarriage
P: let me let me back here for one second year. So two questions. Question number one, what do you think pregnancy is going to be like before you get pregnant?
M: I didn’t really well, let me not say that. I wanted to be one of those women who loved pregnancy. I was like, you know, I doesn’t matter if I’m uncomfortable. I’m gonna love this whole process. So I was one of those women who thought it was just a matter of deciding to love it wasn’t going to be crazy.
P Okay so So that’s what we have stepping in and then is it easy to get pregnant?
M: Yeah, it was easy to get pregnant.
P: Good. Okay, good. One thing down. Now you said the first pregnancy ends in miscarriage?
M: Yes, yes. And honestly, that first the first pregnancy took me by surprise, because I, you know, had never gotten pregnant my entire life, despite not being very active and preventing it for many periods. So I was really surprised, but Okay, here we go. Wonderful. I’m excited. And then miscarried and miscarried at about 10 weeks. So that was very devastating. And I felt very alone. And I’d known my mother had one miscarriage. When I didn’t really know many other women who had of course after my miscarriage, I found out about a lot of women who had because it’s not something that’s talked about a lot.
P: do now that I have a psychologist in front of me, I’m gonna ask do we do we think that’s our allergy to talking about death and hard things? Or do we think it’s something in particular like culturally, or do we think it’s something particular about the pregnancy process?
M: I think it’s a little bit of a both. Our culture is very averse to talking about death, but we’re also very uncomfortable with uncomfortable emotion, and uncomfortable emotion is normal and natural and isn’t something to avoid distress is, but it’s really important to recognize the difference between the two and unfortunately, in our culture, we do not do a good job of differentiating.
P So can you lay up Can you lay out the difference since we’re talking about
M Absolutely. So uncomfortable is anything that again, we don’t like we don’t want it’s unpleasant, but it doesn’t create danger for us. It isn’t something that can be harmful to us. distress, on the other hand, triggers a response within our body that activates a system that tries to get us to get away from the situation that’s causing it. So that signals potential harm to our body or our well being. So things like boredom is uncomfortable, but it’s not distressing. Isolation, right if you are isolated, because you’ve been rejected. Now, that’s distressing, because being a loan for long periods of time, particularly if you’re young, can endanger your well being if I pinch your skin that’s going to hurt. That’s uncomfortable, right? But if I were to rip your skin off your hand, it creates a wound that’s distressing, something is wrong. Does that does that make sense?
P So this is totally helpful and and I’m wondering if miscarriage falls in a gray area where it is it right it’s it’s this is
M miscarriage is definitely distressing without a demo. That sounds like talking about it. Right and talking about our motion is uncomfortable.
P: Okay, okay, that’s fair
M : so the experience of death is very distressing, without a doubt, but the emotion around it, and that is especially when other people are communicating and may feel uncomfortable with somebody else’s grief. That’s that’s discomfort. Okay, we try to avoid that.
P : Let me try to repeat back to you what I think he said to you can put me on the right place here. It sounds like distress is something that triggers your autonomic nervous system to put you in like fight or flight. And then and that shift potentially has like, sends chemical signals to your body and has all kinds of downstream repercussions. But uncomfortable does not induce any of those interior physical things and it’s just, it’s just something you don’t want to do
M Absolutely. However, our brain is so in tune with thinking right? So if we start defining these uncomfortable situations as not tolerable, you know, or dangerous, then the brain reacts as if it’s distress.
P All right, this is tricky. Okay. Yeah. So I’m sorry to pull you away from your story, but no, you know, these things. So I want to ask you, well, I have someone who knows. So this sounds like a really 10 weeks is way too far into the first trimester. To not have it be a really sad event. And is your partner helpful or is anyone helpful or your doctor or
M yes, you know, everybody did, you know all the things that that they could, you know, and, you know, my friends were very supportive and yeah, so I had people rallied around me and and I was very happy about that. I did, but that really longed for my mom,
P for someone who had had the experience in your family who could talk to you about it in a way that other people couldn’t.
M Right. Exactly.
P Well, that sounds hard.
M It was it was. So we had decided that all right. Let’s keep going. My husband had a son from his previous marriage. And he was only three years old when we met so and we got married right away. So it was for at this point, we’re like, okay, I wanted the experience of having a biological child at this point. So try again, so so we try it again. And again, I had a miscarriage and now I started to really worry, like, okay, miscarriage is very common. No, it occurs in one in five pregnancies. All right, but oh, one person having two miscarriages. Not so common.
P Okay, so how common are multiple miscarriages? According to researchers at Yale Medical School, about 15 to 20% of pregnancies end in miscarriage. This is Melissa’s one five number. I’m betting it’s actually higher than that because it’s probably not always reported. But let’s use that number as a baseline. So according to these researchers at Yale, they say 2% of women have two consecutive miscarriages, which still could be due to chance and point 5% have three. Just to give a rough idea something on the order of 3.6 million people give birth each year.
M :So try it again. And I had a certain miscarriage. Now all the alarm bells are going off because that is rare.
P are These all at like 10 weeks
M ish. Well, they were getting sooner and sooner. So 10 weeks, eight weeks, and then six weeks.
P Okay, and is your doctor saying this sounds like recurrent miscarriage and that’s a different boat
I don’t know if the test you took was it? It was just I don’t know. What happened. But yes, I was already pregnant.
P Did you you found out because you got nauseous or you missed your period or like well,
M sensitive breasts. That was my telltale sign with all my pregnancies. All of a sudden, my breasts became really sensitive, very tender, and that’s not a symptom I never experienced during my menstrual cycle. So it was an unusual, so it’s like, Oh, something feels weird. So after being told not to get pregnant, I was like, take this pregnancy test. You know, and sure enough, it was it was positive. So we walk in, she’s like, Well, congratulations, which didn’t feel like congratulations. Because because I was like, I don’t know that I can do this again.
P: Yeah.
M: You know, and, but continue and, and I said, you know, I’ll never forget that first heartbeat that was normal and regular and healthy. It was like, Oh my gosh, you know, that hit 10 weeks. So that was this huge milestone, like Okay, can I get past that? You know, and then I did, and you know, it’s interesting Paulette, with all of my pregnancies. I’m a little different. I told all the people that were important to me, I never kept it silent. And my reasoning for for that is because I knew if I lost my child, I wouldn’t be support.
P: Yeah.
M: So I told everybody in my life that would be supportive and private person so it’s not like I, you know, tell people my personal business in general, but the people that I’m friends with and close with, I didn’t keep it to myself. I told them because I knew I would need them. If I had a loss again, and
P this seems like the way we should all move forward, right? I can’t remember who told me not to tell anyone in the beginning. I feel like maybe it was my doctor. No, no shade intended. But you’re right that the more the course that would help you more the pregnant person in the moment is to have people who know who can help you if it doesn’t work out.
M Right. Right. I’ve worked with so many women that say I don’t want to upset my family. But you’re not upsetting your family because it’s something that’s happening to you.
P: Yeah.
M: And if they’re upset, it’s normal. It’s okay that they’re upset.
P: Yeah, this is upsetting. Yeah,
M: exactly. So, so. So my fourth pregnancy comes along, and it was very nerve wracking. And here I am 37. And I knew I was high risk for a second trimester miscarriage because I had surgery on my cervix earlier in life. So I was already aware of some some high level risks for an advocate that the term you know, with a cervix just opens up spontaneously. So because of my previous my three miscarriages, my advanced age, and I had a thyroid disorder and my previous history of cervical surgery, I was being followed by fetal maternal medicine, which was wonderful, you know, the more medical supports I have around me, the better.
P I agree, I want to wrap you in bubble wrap. Let’s keep going. These next few months I want to
M: Yeah,so here Yeah, you know, all excited and at re 26 week appointments. Just routine appointment doing the ultrasound. They find that I’m dilating. So, the nurse brings in the doctor and it’s like, Okay, we’re gonna do a stress test or you know, we’re they measure your contractions. Oh, yeah, you’re contracting and their regular you’re in labor. I’ll never forget it. I just said, What do you mean I’m in labor? 26 weeks. I know the statistics. So
P and it sounds like you can’t feel it really
M it was uncomfortable, but I was always uncomfortable.
P: yeah, yeah, Yeah.
M: The week prior. I went into the ER because I had pretty severe pain in my back. And they did. They did a a kidney ultrasound. They never did a vaginal ultrasound.. I was I have no doubt I was in labor earlier and it just wasn’t caught. Okay. So I was being pulled over to the ER because it was a beast hospital within a baby’s hospital. The office was attached. And that’s when they started. I got a whole lot of shots to stop labor. I got steroids and was told okay, you need we need to do a series of two steroid shots in case you deliver for this baby we need to get the baby’s lungs here’s what we need to get his lungs developed and delivering it this age only gives us a 50/50 chance of survival. And again, I’m in this whirlwind like what you know, I my four year old, you know, son, you know, steps on my husband at that appointment. We’re all just looking at you like what is going on? So they admit me, and it felt like counting hours at that point. Like I knew there needed to be 12 hours between the two shots at the rate of survival went up if I had gotten a second shot, so literally it felt like counting hours at that point
P and they’re keeping you in the hospital because they can’t turn the lever off. So the shots aren’t working to like the shots which I assume are hormones or something.
M I forget the name of them. I got to see the the two that were critical with the two steroid shots. Each case I gave
P: Yeah. Yeah.
M: And then there was a two other shots. They started with one to see that work because that would be less disruptive. And it didn’t and so then they gave me the second one which was pretty disruptive to my system and everything but But thankfully, it worked the labor stopped progressing.
P: Okay, good.
M: So, after a week in the hospital, and it was no longer progressing. They said okay, we will discharge you on bed rest. And so I needed to see my OB every week and that you know, maternal medicine. Well, the contractions never stopped. So I continue having contractions, which was not a big deal. What we needed to watch was if the contractions became more productive, okay, and so, we had to monitor the level of dilation. And level of effacement of the cervix. And we can only do that by going in Well, I had multiple times at that point going back into the hospital getting more series of shots to stop the pregnancy because it’s it would you know, every now and then an uptick and become more active, which was terrifying. I mean, it was terrifying. But there were all these milestones, right? Okay. So 28 weeks Alright, let’s get let’s get to you know, first it was 28 weeks then, you know, like every week was like, Okay, this UPS our chance of survival. This ups chance of survival. Because at that first appointment, given the statistics of how I was a phased in dilated they gave me a 10% likelihood of carrying to term. So I had that in my head. Okay, I have to we have to make sure that everything is taken care of. So here I am on complete bed rest. We have my stepson who lives with us 50% of the time. My husband was working full time. I had to stop working, obviously. And I only moved into this town that we lived in a year prior when we got married. I didn’t know anybody I’m an introvert. So making friends was pretty hard. I was alone. I was alone.
P Yeah, this sounds this this sounds like it literally are piling one thing on top of another on top of another in terms of how difficult this is. Also I’m imagining they’re saying we’re gonna check your cervix once a week and you’re like, okay, but really, how about every day? How about every day like, wait seven days between each check and keep fingers crossed and
M Well, thankfully, at the OB, you know, one time of the week and then the fetal maternal medicine at the other time we did have to appointment now it was only you know, it was only the fetal maternal medicine that did the the ultrasounds and all of that but the OB was checking the heart rate and my you know, all the typical things.
P; Okay, good. Okay, good.
M: So I had to find rides me was just, it was, it was really tough. And again, this was a time when I really wished I had sisters with a mother and
P: I’m going to stop my conversation with Melissa here. Mother Daughter relationships can and often are many things as a modern day testament to that fact. When I went to the internet looking for articles on mother daughter relationships, we will finish my sentence with the top searches, which included the words difficult, hard and complex. for most of us. Our mother is our very first attachment of the world. And the loss of that whether it’s to death or estrangement can be profound. I appreciate Melissa sharing her story. And next week, she will also share some insights into how she managed all the challenges she faced without her brother. Thanks for listening. We’ll be back next week with the rest of Melissa’s. story
Today we hear the second half of my conversation with Justine. Last week we heard about her first pregnancy that ended in a stillbirth. She just started talking about her second pregnancy, which was looking and feeling too much like the first one for her comfort. And she’s gone into the hospital at 27 weeks to get checked out. Near the end of our conversation, when reflecting on her experiences with pregnancy and delivery, Kristine wonders again about the possible impact that trauma could have on her pregnancies. To give us a sense of prevalent issue.
I spoke with a clinical psychologist who studies trauma and pregnancy. Her conversation is included.
cover art care of: Maddison, owner of County Road Crochet, find her work here
To find Kristine’s writing, go here
Preemie weight
https://www.whattoexpect.com/first-year/ask-heidi/premature-baby-size.aspx
Retinopathy of Prematurity
https://www.nei.nih.gov/learn-about-eye-health/eye-conditions-and-diseases/retinopathy-prematurity
Full Interview with Dr. Natalie Stevens:
Audio Transcript
Paulette: Hi, welcome to war stories from the womb. I’m your host, Paulette kamenecka. I’m an economist and a writer and the mother girls. Today we hear the second half of my conversation with Justine. Last week we heard about her first pregnancy that ended in a stillbirth. She just started talking about her second pregnancy, which was looking and feeling too much like the first one for her comfort. And she’s gone into the hospital at 27 weeks to get checked out. Near the end of our conversation, when reflecting on her experiences with pregnancy and delivery, Kristine wonders again about the possible impact that trauma could have on her pregnancies. To give us a sense of prevalent issue.
I spoke with a clinical psychologist who studies trauma and pregnancy. Her conversation is included.
Let’s get back to Kristine’s story.
K: I got to the same gestational age or as became hyper concerned that something was wrong.
P: And that because you because you felt something different or just that I felt like
K: there was too much similarity. You know, gestational li small, not a ton of movements, you know nothing that should have really blossomed as a second pregnancy should you know once your body’s gone through that once but again, my first pregnancy being so a typical no one could really say well, maybe this is just what your body does. Or there’s you know, this is this wasn’t like that kind of thing, but I yeah, there just didn’t come a date in May 2008 Or I said I think there’s something wrong and going in kind of thing.
P: did you drive to the far hospital or you went to the near one?
K: Yeah, I by that time, we we’ve had a few emergency trips for various reasons. And it was very clear that if you’re, if there’s anything at all complicated about it, you’re gonna get transferred anyway, so you might as well just drive there. So we did and we were admitted. And that just started the whole process of figuring out how much of this is normal, you know, yes, your fetus is in distress you know, we don’t know but we don’t know. What’s what’s normal here. And
P: when they say the fetus was in distress because of a heart rate issue? Okay,
K: yeah, and and it became, you know, became our decision quite quickly, you know, within a matter of hours, you know, do you want to just wait this out and see what happens with this traumatic history, or do you want to start on I forget what it is. It’s a surfactant that they unstart to help the baby’s lungs in emergency situation.
P: So surfactant is a substance that makes the lungs more pliable. Premature babies can be born before enough surfactant has been made with the poor lung function
K: and or do you want to just deliver her early and take your chances on what she wants you can get from the NICU. And I don’t remember the pin drop of the decision. But I remember both of us being a man of our chances were better with her being delivered.
P: Yeah.
K: And it was not an easy decision. And it was not scary. But I did discover after the fact that the one thing that was right in that decision is that the NICU was very successful. They hadn’t lost a baby of any kind of distressing many years.
P: Oh, that’s great.
K: And the OB, I discovered after the fact is was a doctor that all the other nurses really wanted on their own case.
P: That’s lucky.
K: Yes. And so between the two of them, we had good feedback, but the OB was very much there’s something wrong my guess is that this is a dire situation. And the NICU, who’s a very cerebral research renowned, published researcher, was much more, you know, thoughtful, he’s like, Well, this could just be normal for your body, but that was came straight out of the confidence that whatever happened happened, and they would deal with it.
P: yeah, Yeah.
K; And, and we were lucky that those two things came together at the same time. So yeah, it was delivered in 27 weeks and five days.
P: What was that birth like?
K: Again, it wasn’t prepared for it. It wasn’t prepared for a cesarean. chose to be awake. Which for me is the cocktail of sedatives and and everything else that I am not familiar with. So when they say as they pull on plunger, this is going to give you a headache it Did you know immediately the headache what was cool about that the operating room. I learned after the fact again, that every single practitioner was a woman.
P: Oh, that’s so cool.
K: the anesthesiologist, t the OB forming a surgery and everyone else attending so
P: that feels comfortable. I like that.
K: Yeah. So they did an emergency C section as well.
P: It sounds like yep.
K: An emergency and then I didn’t see her for a whole night. We didn’t she was going in the afternoon. You know, whisked away before I saw anything. And then a whole night I mean, we got reports, but at the same time, you know, in order to see her you have to get yourself physically out of bed after a C section. Get yourself down there. And that’s after they’d already been flying you to start pumping. You know, in the night I remember thinking whoa, but at the same time, yeah. You have to do the things that no one tells you that you need to be prepared for but you do and yeah, so we got we did that here.
P: let me ask a your question about the birth? Did you hear her cry?
K: No, she was way too small. They you know, if, if there was anything to be observed, I think they could tell me or it’s written somewhere in the record. You know that she’s super active. I think about premies that you don’t realize you’ve never watched one in the NICU is that they’re really mobile. But think about how mobile they are in the womb. Yeah, that’s how mobile they are outside the body too.
P: Yeah.
K: And so they are flip flopping like little fish in their isolettes because they don’t have the body weight to slow them down.
P: Yeah, that’s interesting. Yeah.
K: So I think there was somewhere on our record saying that mobile you know, it moving the clincher that we didn’t know learn until after the fact is that she did not receive she didn’t require intubation. She came out breathing, and stayed that way.
P: Amazing. For 27 weeks. That’s amazing and stayed
K: that way for two full weeks.
P:I feel like you have an Olympian.
K: She does she does like to swim. She preferred to ride horses. And then when she did receive oxygen, this is jumping. headwind go back and get details. But it was supplemental, it was never intubated. And so the weaning process was was pretty easy. And I did meet other NICU families in that timeframe. Some of them are burdened by by oxygen for life. Yeah. And I remember thinking how much how cumbersome it was just to bring them home with a little aid, you know, an eight milliliters of oxygen, which is barely, you know, barely the threshold to even have to monitor for anything, but many families don’t have that experience.
P: So let’s talk about the NICU. How long was she there for
K: a shockingly short amount of time for a smallest us she was born at one pound? 13 ounces. So you don’t realize how light they are? Because they are they look fully formed? Yes, but they fit in the palm of your hand. And she was there from May 22 Until honestly the middle of July. So probably just under two months.
P: that Does seem really short.
K: Yeah, she came home weighing four pounds
P: How did that go? That’s easily My mind was had all kinds of issues but she was like six pounds. I found that very stressful. Yeah.
K: Oh, there’s I mean, they come home with you know, the tiny micro diapers that they only issue to hospitals and the preemie clothes don’t fit and, you know this and that. Well, it was you know, it was a pretty steady progression. But of course we didn’t know what the progression was at the time, the whatever the developmental hole in their heart muscle that needs to close between the ventricles that closed on time. Even though she was outside the womb. She never had lung pulmonary issues. They were concerned at the time they released her about her vision and her hearing. Hearing is all resolved and vision did not she was she didn’t meet the threshold for retinopathy of prematurity. And that launched into an infant laser surgery when she was a little guy but
P: okay, so retinopathy of prematurity. ROP is an eye disease. That’s my current preemies form before 30 weeks are babies who weigh less than three pounds at birth. ROP happens when abnormal blood vessels grow in the retina which is the light sensitive layer of tissue in the back of your eye. Normally the blood vessels of the retina finish developing closer to the end of 40 weeks. So babies born very early, these blood vessels may stop developing normally, blood vessels can grow in the wrong direction. Blood vessels are attached to the retina. So if they go too far in the wrong direction, they can pull the retina up off the back of the eye.
K: Anyway, coming home at four pounds. What was cumbersome to me was the fact that she did have that whiff of oxygen. And so then they come with a heart monitor. And so between those two things, you’ve got four wires tethering you to 10 feet of space and, and needing to change it a couple of times a day. 24 I can’t remember what that was. But anyway, it was a lot of stuff. And we had to we wanted to make sure we were at least responsible with it. So we had to stay overnight with her in the hospital under surveillance to make sure that you know we could monitor these systems.
P: And Did did you appreciate that adult supervision or did you think oh, we could definitely do this
K: at the time it was an all new parents stuff. I was like Okay, here we go. Because it just is what it is. And in the meantime, there had been this weird learning curve with pumping
P: Yeah,
K: because I you know, I’m felt strongly about it, but I had no idea of what kind of commitment pumping was when your intent wasn’t nursing at all.
P: Yeah.
K: And so I was pumping, freezing it in essentially, you know, those little two ounce urine cups that they issue from a hospital or they used to and happens to be the right size for feeding a NICU. Baby.
P: Yeah.
K: And so I had a stash of Lowe’s at the hospital to refer to it in that and then deliver it to the hospital, you know, every couple of days, but that regimen was working. And so they were very adamant about that. And so that’s what she started on and by the time she was able to take a bottle that she did and stayed on stage on a breast milk regimen. She had a few other supplemental weird things like liquid caffeine. couple little things that had to be added supplements to her milk. But the clincher there was a she refused to nurse and so even though she was home, the pumping continued. I realized many many women do that by choice. It’s their profession and they’re there. The rest of their life more, but at the time, it was still cumbersome. Maybe I just had old technology or bad bad attitude about it. I don’t know I did it. And I didn’t do it begrudgingly. But it was it was a lot.
P: That sounds like a lot. It’s you know, bringing home an infant under perfect circumstances a lot. So in this case, it’s just when we were in the hospital, we have baby in the NICU. Also, I wanted to stay forever with like, you know all the nurses every day. How can you send us home to be on our own? We don’t know anything. So I’m amazed that you did all that on your own
K: well, it was a leap of faith, you know, at the time because I couldn’t afford care for her in order to keep working. So I had some back and forth with my employer at the time as to when exactly my maternity leave should start. Because I had been spending oodles of time in the NICU and it didn’t work out very well. So I ended up needing to maintain whatever my insurance margin was from my employer, but I needed to leave my work to be able to care for her time. And you know, there’s a little tiny baby who sleeps even more than a regular sized infant and you know, so there’s a lot of downtime, but it’s still care. You find the replays, especially in a rural setting. And so that’s what we did.
P: How old is she now?
K; She’s 13
P: Oh my god, that’s amazing. Wow.
K: And what was even more amazing. Besides the scent was written off to the approved maturity is that nothing else seemed to falter. By the time she was a year old. She was on the growth chart for her actual age, gestational age, and has since gotten way off. She’s 510 her feet are size 11 and a half.
P: Wow. That’s amazing.
K: Yeah. Her father is very tall. And so at the time I remember someone telling me well, you know, typical, you know, she gets her overall stature could be stunted by the time I joke, like, Well, I hope I hope so. And she No, I think he’s plateaued out now. She’s taller than I am. She takes very seriously.
P: I don’t know if he was very funny. My daughter does, too. I don’t know if you’re a Phineas and Ferb fan. Have you ever seen that show? Yeah. Well, five for 10 is a flawless girl.
K; I will tell her that. That’s funny.
P: Never less than five for 10 My girls say it all the time. None of us are five or 10. So we’re all yearning for that accomplishment.
K: Yeah. Yep. I have to I have learned field to be as tall as she is. And it’s such a it’s such a strange thing to be looking her in the eye that that she comments on it every time.
P: That is amazing. Wow. Yeah, that is some journey. So with, I wonder with her birth, you didn’t examine the placenta or anything like that after the delivery.
K: I think there was so many things I didn’t know or think about there. She has that big fat medical record. Again, because her NICU primary was a researcher. I didn’t realize until after long months after maybe a year after when they were just codifying everything. That went into her care and everything they surveilled for a year or more that the surfactant they gave her at birth was some of the earliest they’d ever administered to a baby that small
P: oh wow.
K: And, you know, of course, I probably signed signing something that gave them permission to pursue that therapy. But at the time, I couldn’t No, probably couldn’t have lived with that information at the time. But you really
P: you wouldn’t have signed it. You wouldn’t have said yes to it. If you had known.
K: I don’t know if I wouldn’t have said yes, but I didn’t want to know about that risk. And I would have had an opinion about that risk at that time. But the way it worked out, you know, that’s what it is.
P: Yeah. In those emergency situations. It’s interesting to see what they would do. And it’s amazing that she spent such a short time in the NICU given how young she was. And it sounds like you didn’t get steroids before they delivered you to help with lung maturity.
K: Probably they probably did, but the window of time was too short. Yeah, yes. So the, you know, as you needed, what, eight hours, 12 hours, something like that, and the gap was only three hour.
P: oh Wow, that that’s kind of amazing, right? The progress they’ve made in helping premies to breathe is is an amazing accomplishment. Yep. Yep,
K: I follow up on that was good again, or hearing if good or vision is not a you know, not great, but it’s not a documented you know, when people from getting a driver’s license or anything that is isn’t a hardship that they will have dealt with
P: But does that mean that she wears glasses or it’s something more expensive than that?
K: She had surgery when she was an infant infant, like babies basically at her term date. And what was interesting about that time was that she saw an ophthalmologist at Mayo in Rochester. And they had recently changed the threshold for qualification for surgery, and it’ll have lowered and so because she was one of the first babies to meet that threshold, the entire clinic was looking at her she was probably served by 12 different physicians just to make sure yes, definitively, this qualifies and we’re going to do XYZ.
Some kids have that needs the same surgery and never need visual correction. In her case, by the time she was a year, maybe, you know, their eyes can still pass but by the time she was a year they were they were starting to look at lenses and then as soon as we could keep goggles on her head she started wearing lenses and then there was the biting your nails wait and see how long it takes for their eyes to fully adjust and settle and stop changing stop getting worse. So the first couple of years of her life and probably stabilized by the time she was around nine. But it is what it is. And I don’t think it necessarily gets worse. But the question then becomes what has their little infant brain done to account for the fact that their vision has always been lopsided, substantially lopsided, even with correction.
P: does that mean one I worked for them the other way better?
K: Yep, revision even with glasses is probably 20/40. And without it I don’t know. And and that launches into my most recent chapters, which is you know, how to address education issues, and how much of them can be pegged to prematurity. So vision was a first thing developmental delays. And, you know, I’ve been the one along the way saying, you know, what, yeah, there’s this, this and this happening where there’s clearly delay, but I don’t see the gap necessarily getting bigger. I just see that it’s a delay that we’ve defined a little bit better with each passing year. You know, is it a year, two years, you know, what’s, what is it? And then you want to say that you just learned to compensate for all for all the things vision for academic things that are academically challenging things that are socially challenging. In her case, it helps a lot but she is so called because she was there. And people wouldn’t notice that she might have any kind of academic challenge unless she was around and asked to do something that’s difficult for her
P: that’s such an inspiring story. That she’s done. So well. If you are looking back on this experience. Now, is there any advice you would have given to your younger self?
K: I’m not sure. Honestly, I think I’m just that much older than people who would be experiencing or pursuing anything. Even like what I experienced because of the age of the internet that you can, you know, as scary as it is to research anything medical on the internet, you have such access to all the scenarios. And I think you could at least learn more about what could happen and be aware. So you know, my younger self, I think it’s all the same options. I’m still learning and I’m now divorced, still learning all the same license that when your gut tells you there’s something wrong or stressful or toxic in your life, your relationship. It’s not always wise to just bootstrap it.
P: Yeah.
K: That’s you, you really have to stop and get to the bottom of those things because you know, whatever you want to read about epigenetic trauma.
P: So this is an issue that Kristine has brought up a few times how trauma could have affected her pregnancy, and the development of her babies I took this question to Dr. Natalie Stevens. Today, we’re lucky to get a chance to talk with Dr. Natalie Stevens, a clinical psychologist and assistant professor at Rush Medical Center in Chicago. Thanks so much for coming on today. Doctor.
Dr. Stevens: Thank you for inviting me.
P: I wanted to talk with you because you study the importance of the impact of a history of trauma on pregnancy, and how trauma informed care can benefit patients. But rather than distill all your work and effectively capture the scope, why don’t you tell us a little bit about your work?
Dr. Stevens: Yes, absolutely. Well, prior to going to graduate school for clinical health psychology, I trained as a childbirth doula, and I was trying to see which path seemed to fit most whether I wanted to go a midwifery or medical school path or more psychological path and I knew that I needed to have some experiences from the setting in which I would be working and it turns out that I chose the health psychology path which doesn’t involve providing any medical care but rather depends on understanding from the patient’s perspective, what it is like being in a medical setting when you’re going through some kind of health related experience. And so my research and clinical focus has always been on the transitions. of care, through pregnancy and postpartum which also includes fertility and fertility loss, other topics like that. And when I started this over 10 years ago, it the concept of trauma really wasn’t considered a lot of the attention. Back then was mostly focused on depression, preventing and treating perinatal depression. So that area has come a long way.
Paulette kamenecka 23:17
For sure. It’s kind of shocking that this is new, which given the pregnancy is not that new but so thank you for your work, because this seems vitally important. One thing that when we talk about trauma I think people can get confused by is, is what does that mean? Does that mean, you know, a child survivor of a war or, you know, what’s the scope of that? Can you maybe define for us what we’re looking at
Unknown Speaker 23:41
Absolutely. And it depends on who you’re talking to. Because when I started my work early on, working pretty closely with obstetricians and the obstetric residency program at Rush, the word trauma in the medical setting means a physical trauma that requires even more clarification. So a psychological trauma is more often what we’re thinking about when we use the term trauma and it’s an event that is a stressor that is out of the ordinary beyond the the intensity or level of threat to a person’s health, life, safety, bodily integrity than what is typically experienced.
P:Today, we’re gonna talk about perceived concerns about how trauma may have affected the outcome of our pregnancies. Can trauma cause slower growth for the fetus in utero and trauma cause issues with the placenta? Do you think there’s any connection there? And and, you know, is it related to premature delivery?
Dr. Stevens: Yeah, that this is such a fascinating and complex question. But the short answer is, yes, there. There are physiological things, processes that have been sort of teased apart by various researchers and projects to try to see what the connection might be between both having a history of trauma, but not necessarily a diagnosis of PTSD having a history of PTSD that isn’t present during the pregnancy. Or having PTSD while you’re pregnant, that has been examined in relation to prematurity, low birth weights. And those are those are the two primary outcomes, but there are a number of complications and things that quote unquote, can go wrong. That I think feed into a lot of the anxiety that pregnant people feel. So there are other things going on here. Trauma doesn’t only lead to PTSD, there’s also the risk of depression, substance misuse and anxiety. So I was thinking about that and the story you described, that person doesn’t have to have all the full criteria for PTSD in order to have a lot of hyper vigilance in the subsequent pregnancy when all of these signals are coming up that remind them in parallel. What happened before. So then there are other studies that have looked at anxiety symptoms, not specifically traumatic stress symptoms, but anxiety symptoms, that have also shown an association with these outcomes. But I think the important thing to remember about all of that is that this is the larger scale epidemiological research and it’s really, really difficult to if not impossible, and as researchers and scientists we don’t we don’t do this to extrapolate from those findings to an individual case. So the other thing I think it’s important to mention, and there’s some really great, accessible information at the National Center for PTSD website that talks about different risk factors for PTSD and how women are more likely to develop it than men are. Part of that is greater exposure to trauma, greater exposure to things like sexual violence, which are more likely to lead to PTSD and that the key here is the idea of what what does the brain do, what does the person’s thinking do or how does their thinking change as a result of the trauma? And so there’s some evidence to suggest that women are more likely to blame themselves for things like sexual assault, but also the instance you’re describing something that happened to my pregnancy and that self blame coupled with the social support, not not having those supportive people around you, that you feel safe and and perhaps are helping you to challenge that narrative are really important process. So I’m speaking more to the psychosocial processes because that’s more my area, but there is absolutely some fascinating studies that I have read about the links between trauma and inflammation. The way that it affects the fetal placental unit, you know, this kind of unit where the pregnant person’s body and the fetal unit are coming together. And there are certainly many studies that have pointed to, although not completely described, or found, that there’s there are alterations when there’s a history of trauma, even even epigenetically even in previous generations. If I can repeat back what I think they’re saying is two things. Thing Number One is there’s definitely research on the fact that history of trauma and maybe trauma during the pregnancy can have physiological effects that might be correlated with low birth weight or prematurity that can’t explain one person’s experience. But he somewhat natural inclination we all have because the pregnancy is going on in our own body to claim responsibility for the outcome is not helpful and probably not right, given how complicated this
P; process is. Right? If you had that much control over your own pregnancy, everyone would be born with like an eight pound share. Right? Exactly
This episode could be titled “Overcoming: A Guide”. My guest overcame the challenges of premature birth, and a fourth degree tear, and a misdiagnosis, and a fistula and a stoma. Having had so many elements of her life overturned by her experience of birth, she was reborn in a way, as a complete badass tackling every physical thing that previously induced fear in her. She’s challenging all the ideas that have created limits on her life and in the process, raising awareness and money for others who have experienced birth trauma and changing our perception of what life with a stoma can look like. I’m also lucky to include the medical insights of a fantastic OB, who happens to be the co founder of an organization called Beyond Fistula, helping women in Kenya who are working to overcome their own challenges with obstetric fistula.
You can find out more about Gill at: https://www.stomachameleon.com/
You can find out more about Beyond Fistula: https://beyondfistula.org/
Thank you to artist Nancy Farmer for the beautiful cover art. For more glorious pictures of swimming and light in the water, see : www.etsy.com/uk/shop/WaterDrawnArt
or: www.waterdrawnart.com
What’s a Show
False labor
https://my.clevelandclinic.org/health/articles/9686-true-vs-false-labor
How common is tearing?
https://www.rcog.org.uk/en/patients/tears/tears-childbirth/
Stoma
https://www.webmd.com/colorectal-cancer/colostomy-stoma
Sepsis
https://obgyn.onlinelibrary.wiley.com/doi/10.1111/tog.12623
Audio Transcript
Paulette: Hi, welcome to war stories from the womb. I’m your host Paulette Kamenecka This is Episode 25, which feels like a milestone of sorts, and as such, I have a particularly powerful story today. I’m inspired by the women who share their stories with me, because these stories showcase strength and resilience that often the women themselves didn’t know they have. Today’s guest is an amazing example of this, and this episode could be titled overcoming my guest overcame the challenges of premature birth, and a fourth degree tear, and a misdiagnosis, and a fistula and a stoma. Having had so many elements of her life overturned by her experience of birth, she was reborn in a way, as a complete badass tackling every physical thing that previously induced fear in her. She’s challenging all the ideas that have created limits on her life and in the process, raising awareness and money for others who have experienced birth trauma and changing our perception of what life with a stoma can look like. I’m also lucky to include the medical insights of a fantastic OB, who happens to be the co founder of an organization called Beyond fistula, helping women in Kenya who are working to overcome their own challenges with obstetric fistula.
Let’s get to this inspiring story.
Hi, Thanks so much for coming on the show, can you tell us your name and where you’re from.
Gill: Hi. Yes, sure. So my name is Gill Castle , and I’m from Northern England on the border with Scotland
P: nice, lovely How many kids do you have?
G: I have one I have some who, a little boy who’s nine and a half.
P: Oh wow, that’s a fun age,
G: yeah yes I’m just striking out getting out, or wanting more independence. So, yeah.
P: So Gill before you had kids I’m imagining that you had some ideas about what you thought pregnancy, like, what did you imagine it would be like,
G: oh, a piece of cake. You know, I was fit and healthy, I’m not an ill person, so I don’t do illness, I don’t get ill, you know, don’t really get colds, never had chest infection, you know, there was just, yeah, Well, I was going to get pregnant, and I was going home, baby. And that would be it really. Pretty much.
P: Okay, well it’s a good way to go into it, I guess, as good as any. And did you get pregnant easily.
G: Yeah, I did actually didn’t take long at all. Basically, that we tried for a couple of months, My husband worked away. He then went away and came back and we got pregnant, and literally the day came up.
P: Oh wow, well done.
G: Yeah, yeah, I mean, and the reason I know this is, it was some sort of freak chance because my period was due. Three days later, and it never came. And I mean I don’t really know how that even works but the child has definitely his.
P: Did you find out with like a home kit?
G: Yeah, we just did a, just from the supermarket.
P: Yeah,
G: and get the whole pee on the stick thing and there we are, the two lines I can’t even remember now….if it’s two lines or cross or whatever. But anyway, I was pregnant. And, yeah, and I remember actually my husband not being sort of I mean he didn’t like jump up and down. He’s not a jumping up and down kind of person anyway. Yeah, but he, he was just like, alright, well yeah.
P: Taking it in stride. Okay.
G: But it’s still quite exciting. Yeah, yeah.
P: I’m assuming because you’re in England, you plan to go with a midwife.
G: Yeah, well, in in England. Yeah, well, Yeah, we have midwives, but you don’t, well you’re meant to have a dedicated midwife throughout your pregnancy, but not necessarily they’re not the ones that are at the birth but yeah, it was just going to be midwife. I was going to be an uncomplicated pregnancy so I wasn’t high risk or anything like that, but there was nothing really, you know, to cause alarm, to be honest for pregnancy, so yeah that was just the plan just to be with a midwife and just give birth in the, in the hospital in the city,
P: was the pregnancy easy? did you have, you know morning sickness? or
G: no not the only thing I did have which I would actually rather have morning sickness, none whatsoever…because I had a couple of bleeds, which obviously is really, really stressful, so I had a couple of early scans, but they were always absolutely fine. But yeah I mean I didn’t get heartburn. I didn’t get stretch marks, mind you, that’s probably because I, I gave birth six weeks early so I missed out on that final expansion of the stomach. But yeah, no I was really, really fortunate I was, I was absolutely fine I’ll continue walking. I continued working as well, it was no problem,
P: and then, you said you delivered early so, so what happened there?
G: So what happened was I was a police officer at the time, and I, we were working seven days on, and then four days off. I just finished my seven day set, and I was woken up the following morning. And it was exactly seven o’clock in the morning because I remember looking at the clock woken up at seven o’clock in the morning with a really sharp pain, which I now know was a contraction. And this was six weeks before my due date, so I just had this really sharp pain, then it stopped, and I went to the toilet and there was like just a little bit of pink on my underwear. And I thought, it’s a bit weird but you know it wasn’t in any, any discomfort like the pain it just disappeared.
P: Yeah,
G: so I left it for another hour and a half and then I had another contraction. But again, you know it wasn’t, you know it’s just like a quick kick in the stomach isn’t it, so I just thought, oh, oh. Whoa, that was strange, so I rang the early pregnancy unit at the local hospital and explained what had happened, and they said oh right, you’ve had a show, which is what the pink discharge was in my underwear
P: Show is part of the mucus plug blocking the cervix that starts to come away when labor is starting. It’s liberation from your vagina means that the cervix is starting to open. It might contain a little blood, which is why it’s pink
G: And yeah, you better just put on get checked out but you know we’re not worried. Just just come along and I told my husband, who said, Oh, but I’m about to go and get my haircut. No you’re not. We’re going to the hospital. There was a pause as we both looked at each other and then he was like, right okay we’re gonna go. Yeah, we took all the hospital bags off we went. And I was put under observation, and they said oh you know, you might be having contractions but they were really, really far apart, you know, an hour and a half apart. They said, You know, we’re just going to monitor you. We’ll see what happens if you progress, but what it might be, is false labor.
P: Yeah,
G: so there’s my order was written just completely stop, and then you’ll go home. Yeah, so I sort of had this in my head that this was all just fake it was all false wasn’t gonna go anywhere . That was our that was, I was fine, really, was doing my knitting, and I wasn’t really, I don’t know why I wasn’t bothered it just wasn’t, I wasn’t concerned.
P: I have to say I’m impressed that you brought your husband along I would definitely have dismissed my husband thinking like to try to make it so.
G: Yeah, yeah. Well, I think, number one, I don’t like driving into the city anyway, and the parking at that particular hospital was an absolute nightmare. So, and it was sheer, good luck and good fortune that he was there. Yeah, cause he works away, and he was actually due to be back until two weeks. But I think the week before the baby was due. So he just happened to have come home, and he was due to leave again a couple of days later. So, I mean if this had happened a week later he would have been on a boat in the middle of the North Sea, unable to come back. So yeah, that was one of the lucky things, not many lucky things but that was one of the,
P: so you’re at the hospital, and how long are you there and they’re monitoring and like what what’s going on.
G: So we got there about nine o’clock in the morning, I lost track of time really. All I know is that by, say, two o’clock in the afternoon, I was in established labor, and obviously the contractions have been getting closer and closer together. And because I was in early labor they needed to monitor the baby, so they had lots and lots of wires and things were strapped to my stomach and I couldn’t get off the bed I couldn’t walk around, couldn’t get myself comfortable at all. And when I was really in full swing of labor, I remember saying to the midwife. Oh is this. Oh, is this actually labor. Am I having a baby today, and she said oh yeah you’re very much having a baby, you’re going to have a baby really quite soon. And I was like, Oh, I just couldn’t. I couldn’t quite get my head around what she was saying, so so so yeah that’s when I sort of realized mid afternoon that I was on my way to have a baby,
P: That is kind of shocking especially the way they treated you when you came.
G: well yeah you know just, I mean they did sort of laugh in the delivery, delivery suite and my husband did as well because to them it was obviously really really big but I was, I just kept saying, oh this console and I did sort of say, oh thank God for that because I’m not coming back in six weeks time and do this all over again. Better be a baby or the other. All right, so by about four o’clock in the afternoon. That’s when I was in, I was in the grip of it all, but, as in the UK it’s probably similar in America but in the UK we have the opportunity to write a birth plan.
P: Yeah.
G: Which is nonsense most of the time isn’t actually level, level gets followed but now for one reason or another, and I’ve forgotten. I’ve written in my birth plan that I didn’t want to have any pain relief until I asked for it.
P: Yeah,
G: because I thought well I’m going to be the best judge of what I need, and I don’t want people given it to me too early. I want to be honest for as long as possible because then I’ll get the maximum benefit from the pain relief…I’d forgotten that said that. So then I was thinking well I don’t want to ask for pain relief, because they’re not giving me any, so they mustn’t think that I’m fat enough yet to be given pain. So I was laboring away but I’ve seen no gas and air with absolutely nothing until eventually I said you know, pain relief yet, and we’ve been waiting for you to ask it’s on your birth, no it’s not that you are like, Oh my gosh. Anyways, well you can try gas and air but we don’t think, you know, I think you’re a bit far gone for that and they were right.
P: Yeah,
G: I took a bit of gas and air and I was like well, for quite a lot, basically said This is rubbish. But then that’s when it all started to get a bit complicated because, obviously, you will know this but when a baby’s born, it actually has to help itself out with a birthing canal, at the end.
P: Yeah,
G: but because was only four pounds seven and he was tiny, he, he got tired, was exhausted, and he was back to back as well. So, his heart rate dropped, and then all hell broke loose. So I just remember all of us in numbers there’s loads and loads of people there, and they said right we’re gonna have to get you into theater give you an epidural and and get this baby out. You know, they said, no time to do a C section or anything like that we’re just gonna have to get the baby out. But they didn’t really say that quite as explicitly as that. I just remember lots and lots of people, and just the conversation of right we’re going to theater. And, you know, we’re going to get the baby out
P: that’s super interesting to me that they said like, this is an emergency. There’s no time for a C section, because I would imagine that vaginal delivery would take longer.
So I brought this question to a doctor. Today I’m lucky enough to talk to Dr Matityahu who’s an amazing OB and the co founder and executive director of beyond fistula, an organization in Kenya, that helps women who have encountered fistulas in childbirth. Her organization helps women heal and rebuild their lives working out social and economic issues that these injuries can create, and she actually introduced me to Gill–an introduction I’m entirely grateful for. Hi Dr Matityahu thanks so much for coming on the show.
Dr. Matityahu: Thanks for inviting me again I love speaking with you and I love everything that you’re doing to inspire other women so thank you.
P: So one question I have is Gill talks about how they say, we’re gonna have to get this baby out and there’s no time for a C section isn’t C section the fastest way to get the baby out.
Dr. M: I mean it’s either C section or vacuum or some people will still do forceps. If the head is crowning and you can, and it’s right there and you can just sort of put a vacuum on the head and gently pull or put forceps on and gently pull and get the head out within a minute or two, then you would do that if the baby’s head is a little bit higher up and there’s no way to immediately encourage delivery and C section.
G: Well, you would have thought, you know, but they, I mean, considering that I went into theater, and it took three attempts for me to be given the epidural.
P: Yeah,
G: because they couldn’t get it in my spine. And I do remember being absolutely petrified at that point because of course they say you know this is really sharp needle, you have to keep as still as possible, because it’s going in your spine. And, I mean, there I am sitting on the bed holding a pillow to try and keep them but having contractions and trying to keep reliving, I mean, so, I mean it took them three attempts and then they finally got it in as soon as I got the epidural in. I Do you remember how she lined back and sort of going, Oh, right. Hi everyone. Hi, nice to meet you, sorry I’m not normally that awful, I’m horrible. I’m really sorry and, and I looked at my husband and I said oh have you been here all the time. And he said he was absolutely gutted, because he was starving, he said, You mean I could actually let you go and got something to eat,
P: so they get it in and then do you have a long period of pushing or are you already ready to push or how’s that all work.
G: To be honest, I don’t remember any pushing at all. I don’t remember anyone saying anything about pushing to me. I remember literally just lying back and saying hi everyone, and then they fiddled about, and then they brought out this baby.
P: Oh wow,
G: literally, literally, you know, and I remember they sort of reduced this white mucousy covered while baby, literally in front of us, and I was a bit like oh and then he was whisked away straight away to where they put them on the side and the works on him. We heard him crying, so I wasn’t, I wasn’t that concerned, and they had said you know, we’ve, we’ve given you the steroid injection, because the lungs are the last thing to develop in a baby so we’ve given you that to his lungs when he was grunting which is fairly common with newborn premature babies. Anyway, he was taken off to special care and that’s when I was stitched up and really that’s when the catastrophe happened
P: they take the baby and he’s off. You said he’s like four pounds seven ounces, something like that, yeah, yeah, that’s a pretty decent size for thirty four weeks
G: Yeah, that’s right
P: the person’s dishing up is an OB. Yes, she was a consultant, and she’s the one who told you that situation.
G: Yeah, so, so they said, you you’ve sustained a tear. And so while you obviously the epidural is still working. We will, she’s going to repay it. So you just lie there and she’s going to repay you. And, you know, don’t worry about it. You’ll then go back on the ward and be reunited with your baby. But because I couldn’t feel anything, because I’d had the epidural, I really had nothing to worry about. I mean, I was kind of aware that women could tear giving birth but I didn’t really know anything about I didn’t really understanding, to be honest, the significance of having a tear on the extremity of the tear, of course.
P: How common is tearing?
Dr. M: tearing is pretty common, we grade the tears by numbers so a first degree tear would be a really superficial tiny tear in like the vaginal mucosa or some of the tissue around the entrance of the vagina. A second degree tear is probably the most common, and it’s sort of through the vaginal mucosa and and through some of the muscle, and a third degree tear and they call it a partial or a full third degree tear is a tear that goes through the vaginal tissue and into the sphincter around that the rectal sphincter, so it’s a tear that’s either a partial sphincter tear or a complete sphincter tear is a third degree sort of partial third degree or full third degree, and then a fourth degree tear is a tear that goes, again, through the vaginal mucosa of vaginal muscle through the rectal sphincter, and in addition, through the rectal mucosa so it’s a tear that goes right through and into the rectum, that’s a fourth degree tear those are much less common,
P: to put some numbers to this discussion, according to the Royal College of Obstetricians and Gynecologists in England, up to nine in every 10 First time mothers who have a vaginal birth will experience some sort of tear graze or a episiotomy for third and fourth three tears the numbers are a little different. They say six out of 100 or 6% of first time mothers experienced this
G: yeah, I just wasn’t worried cuz I didn’t feel anything so far as I’m concerned, I was just like well this is normal. I want a baby, I’ve torn she’s gonna stitch me up and I’m gonna go back on the ward and meet my baby, and it’ll all be fine.
P: It sounds like she didn’t present it as something to be worried about.
G: Well no, that’s because she didn’t think it was at the time which we found out in the nature investigation that she, she completely misdiagnosed me
P: so as far as you know she stitches you up and you go back to the ward
G: yeah, yep so she says, and, and they said Ryan, you’re going to go back on the wards and all you need to do is you just need to keep the wound clean. So even though it’ll be painful, you must, You know, have a shower, keep it clean and dry. Don’t avoid having a bath or shower or anything like that. And I thought well that’s absolutely fine that’s, you know, that makes sense to me. If I can do that no problem at all. So once the epidural wore off. And we finally met our baby at two o’clock in the morning, he was born at 20 past eight at night finally met him on the ward at two o’clock in the morning. And that was very surreal because the ward was really dark, and we were terribly British about the whole thing, so we didn’t want to make any noise. We didn’t want to disturb anybody, so we didn’t even want to turn on the light, so we I mean this is ridiculous. So we turned on our mobile phone cameras are the lights that we can actually look at our child for the this time so I mean a lot of all of that you know obviously affected the bond that I had, because the very first time I saw him he was twisting my face for literally two seconds, and he was away. Then when we met him, we weren’t allowed to, we should have done really, really well I think about it with some of the other people on the ward. It should just put the light on, but we didn’t and I think, you know that that impacted as well, the emotion you felt able to feel.
P: Yeah, why did they have him for so long. What were they doing for all those hours?
G: they didn’t have the staff to discharge special care.
P: Okay,
G: so there wasn’t actually any need for him to be in there, because after he’d been in there for about two hours or something, they said right yeah he’s absolutely fine, he’s ready to come on to the world, but he needed to presume he must have needed to be signed off by a consultant or, or the registrar or somebody must have needed to sign him off the ward and they didn’t have that person, so that’s why we had to wait so long, not because they were doing anything significant.
P: Okay good, so he’s totally fine.
G: He was absolutely fine.
P: But this process messes with your ability to bond and,
G: yeah, yeah,
P: I am totally sympathetic to the impulse to be quiet for other people it’s, it’s hard to have such a, an emotional experience in a packed house.
G: Yeah, and in a dark house when you know, people see things, and you just think, you know don’t want to, and I’m sure you know when I look back I think noone would have cared.
P: Yeah.
G: Expressing joy over seeing their baby you know but you just saw yeah we never had a baby so we were just still in the motions of not having a baby, you know. So, we were on the ward and it was really shocking, actually, because my husband was a Royal Marine. When we were on the ward we were looking at all these women, who was literally staggering about holding onto walls, grimacing with pain, barely able to walk some of them, and Chris my husband looked at me and he said you know Gill, this reminds me of a field hospital.
P: Wow.
G: Yeah, and it really does a study, and never envisaged some ward looking like this normally when you see women with babies they sit at home on a property, or they go along the street with a prom or buggy or pushchair. You don’t see them when they’ve literally just had a baby, but in a way, made me feel a bit better, because all right well they’re just as much pain as me so that kind of normalized it a bit.
P: Yeah,
G: but at the same time, couldn’t sit properly. I could barely walk. It was really painful but that’s the kind of person I am I just thought right well I’m not going to get beaten by this you know all I’ve done is have a baby. Loads of people. Loads of people have tears, so I’m not going to make any sort of complaint or fuss, I’m just going to get on with it. So that’s what I tried to do, but as the day’s progressed, the pain just got worse and worse and worse, and the very next day after having the baby. I noticed like a brownie discharge on my underwear. And I said to the midwife. I’ve got like brownie sort of discharge on my underwear not much but there’s obviously something interesting oh no that’s fine. No, that’s fine, that’s just sort of the tissues all fixing together that’s just a bit of mucus and you know it’s nothing to worry about.
P: Yeah,
G: so I was like all right okay and then I thought well I know when I’ve like fallen over in the playground and scraped my knee. You do get a jelly mucousy type stuff on your knee when it’s healing. So I just thought well maybe, maybe that’s what it’s from
G: Gill talks about brownie discharge on her underwear, should that have been a red flag.
Dr. M: I think that if someone just said I have some brown stain, you know, when blood is exposed to air and is oxidized and dries, like, it turns brown and so if there’s just a little bit of brown staining. You know, I’m guessing that a midwife might think, oh it’s just some old, blood that sort of oxidized and dried on your underwear,
G: the pain just started to get worse and worse and worse, and after about two days, I started getting poo in my pants. And I thought, Well, no, but I wasn’t really because I wasn’t very much, I couldn’t really work out where it was coming from because it didn’t really seem to be coming from the normal area.
P: Yeah,
G: and then it was getting to the point that every time I went to the toilet. I was pulling the emergency buzzer, because I was in so much pain I was frightened to go to the toilet.
P: Yeah,
G: I have to add something that the toilet is going to go rific and, and then I clearly remember, after three days, I was in so much pain and so much distress, I had a shower. And I remember I mean this is, you know so mortified when you think about it, this is what you do when you’re in it. And then so I was in the shower. I could not work out where this poo was coming from and basically I couldn’t work out what was part of my body and what wasn’t. And a midwife came past, and I was completely naked in the shower and I bent over and showed her my backside and said, right, is my bottom in the right place. I said I can’t, I can’t I can’t work out what’s happening I said there’s poop coming out all over the place and I’m just, I can’t work out why my bottom is, and she’s looked at me like I was completely insane, and said, that’s absolutely fine, it’s fine. Just finish your shower, go back to your bed, sort yourself out, you know so yourself.
P: Okay, I want to stop you right there. Now looking back, do we think she should have known that something was off.
G: Oh 100% I mean, I remember being hysterical in the shower, you know and I clearly remember saying, I don’t know why I’m about this I don’t understand what’s happening to my body like where is it all coming from, can you just show me where it is.
P: you don’t feel like the normal bowel movement.
G: No, no. Yeah, I always remember that she just sort of like she didn’t examine me obviously she didn’t come close to me she obviously just glance and said, Oh, you’re absolutely fine basically make it out that was completely mad. And I actually thought I was mad because I knew that there was something seriously wrong. But I couldn’t, I couldn’t get anybody to understand what I was saying.
P: So, I have to tell you as an objective third party that I find this so frustrating to hear I’m so desperately frustrated on your behalf that you’re not being taken seriously.
And then Gill tells the story about the poo coming out in the shower, and she doesn’t know what’s going on with her body, is this a red flag.
Dr. M: If anyone were to say, me or I’m sure one of my colleagues, like I feel like there’s poop coming down my leg in the shower, I think we would say we need to examine you like why would that be coming out, best case scenario I think maybe you have diarrhea and you’re just, you know, things are in pain down there and your rectum sphincter is relaxed, but even with the benefit of the doubt, I would wonder like why would you have stool running down your leg that is not a complaint that is typically heard at all. So, so I think that would make me immediately worry and say wow I really need to investigate like why is there stool, coming down your legs and that is not normal.
G: so then I went back to my bed, staggered back to the bed, and by this point, I could smell poo. I remember I was visited by a friend who’d come to see me and the baby, and she’d said, it smells like poo in here….And I was like oh, it’s the baby, and then I think well that’s not like that’s not long. She can smell something. Yeah, so I said to the midwife. On the evening shift I said, I think I’ve got poop in my pants. She was like really, and I said yes. And I said, I definitely have, and I said I don’t know what’s going on because I didn’t have this couple of days ago. So the way she looked and she was like oh I can’t see anything. And I said, But I’m in so much pain, I said it doesn’t seem to be getting any better. And she said what everyone had said to me repeatedly whenever I’d said how much pain I was in, they just said, Oh, the heat that you can feel around your body around the area that is just the tissues knitting together, and they are producing heat when they’re getting back together. I was sort of thinking, well, well okay, that makes sense, but I’ve had cuts in the past, and they haven’t got this hot, I mean I knew it was a big would but all the same, you know, it just doesn’t make any sense but that’s what everyone just kept saying to me, so I told this to the midwife been through my pants and she looked at me and she said no I can’t do anything. So the next morning, there was a change of midwives. And then the next midwife came on and she said oh you know how you said oh well I’m absolutely fantastic apart from the fact that I’m poo in my pants, you know, apart from that I’m great. And you know what you’re talking about. I said, there’s not be mentioned on her, Handover. Is this not on my notes, shut down and are we talking about what I was like, right. Last night I told the midwife that I poo in my pants. That my friend is about to come in the room. That’s the situation. And she said oh so she had a look and again so it looks like it’s healing fine. Yeah, no, You’re okay. So again, it was like, well this is just, like, completely mad like two people examine me now I would say that there’s not a problem, and everything’s healing. Yet, I know I’m pooing my
P: two midwives check her on successive days and say she’s healing, even though we know ex post there is a problem. Why does it look like there isn’t a problem.
Dr. M: So, you have to do a really good exam to see what’s happening underneath your repair.
P: Okay,
Dr. M: so if you’re just looking into the vagina, and you see your suture line that the vaginal mucosa is sort of closed up on top, you’re not able to look at what’s underneath that and so it’s the layer underneath. That’s not closed until unless you do a rectal exam or put your finger into the rectum and see, do I feel an opening do I feel a defect or is it completely closed off and smooth. You don’t do a rectal exam you don’t know what’s happening underneath. You have No idea. So I mean, it looks nice on top, it’s like if you had a bullet wound in your abdomen, and I just put a shirt over it and you’re like yeah that’s sure it looks great.
P: Yeah,
Dr. M: so like the top layer looks great, everything’s closed off and smooth and looking fine but underneath I’m hemorrhaging. so it’s sort of like it’s the deep layers that have to be evaluated and if you’re just looking and you’re like, everything looks good on top. That’s not telling you the whole story.
G: later that day I was trying to work on a project but by this point, I couldn’t really walk. Essentially I collapsed in the corridor. And I was found by a male midwife. And he said, you know, you’re right and I said no, I can’t do this anymore. I said I literally can’t do this. And I remember like my voice was really weak. And I was just saying, I can’t, I can’t, I just can’t, I can’t do this. It’s so painful, I just can’t cope anymore. And you know what he said to me, said oh, maybe it’s your perception of the pain.
P: Oh my god.
G: Yeah, and I thought, are you having a laugh, like, oh so I’m a wimp. Yeah, part of it died at that point because I just thought right. Oh my god, I, you know, literally just collapse in the corridor. I’ve said to this man that I cannot cope and he said to me, maybe it’s your perception of the pain. And then he said oh, what would you like me to tell you, and I was like no I’m fine thank you. I don’t want you coming anywhere near me.
P: No kidding. Oh my god,
G: you know, and then I just thought that when I am just going to go back to my bed, and I’m going to die because no one’s taking notice of me and be seriously wrong. And while you can probably guess, you know, I’m quite articulate, I’m more than capable of sticking up for myself, I was a police officer for heaven’s sake, but I was in so much pain and I was so weak I wasn’t able to speak up for myself but I could I didn’t have the energy to fight with people to be seen.
P: Yeah, I mean, this is, this is the tricky thing you learn in medical contexts that you have to be your own advocate, but it’s wildly unfair to make a woman who’s just given birth, be her own advocate. Yeah, you’re filled with hormones, you’ve just basically run a marathon by giving birth, these two things don’t go together.
G: Exactly, exactly and my body was fighting too much to give me the energy to then fight for support and help. So that’s my bed but obviously this midwife must of thought Better go and see what’s going on. So another female midwife came and said oh you know I hear you, collapsed, and I examined you. Yes, if you can, but I’m sure like everybody else you’ll say there’s nothing wrong with me. This is after now five days. And she tries to examine me, and I remember she basically put her hand toward where the tear was. And then she immediately brought her hand back And she said, Wow, I couldn’t even get near to it I could feel the heat coming off you, I was basically hovering over that and she said and you, you jumped back on the bed. Yeah, and I was like well yeah I mean an awful lot of pain. That’s right. We need to get you examined by the consultants, the consultants gynecologist.
P: Yeah,
G: came down to examine me, and they actually had to give me gas in it, because they couldn’t get anywhere near me. And the consultants, really look for that long to be honest and she said, right, you’ve got a fourth degree tear, which has been missed. And she says you’ve got an enormous abscess around the tear, she said that’s now burst, and you’ve also got a rectal vaginal fistula, which is where you have a hole between the lining of the rectum and the vagina. You’ve got poo coming out of the vagina. And, and I remember actually being really relieved. I was like, you know, thank God for that. Like there actually is something seriously wrong with me.
P: Yeah,
G: so she said right, well, I’ll have to get the colorectal surgeon to come down and see what he thinks. But she said I think the only way out of this is to give you a stoma, so that we can divert the feces away from this area, give a chance for everything to heal, we can repair you reverse the stoma. And you know, get on with your life.
P: what’s a stoma is an opening on the abdomen, that can be connected to either your digestive or urinary system to allow waste to be diverted out of your body. If it can’t move through your rectum bowel movements leave your body through the stoma and are collected in a pouch that you empty out, it can be temporary or permanent. There are a number of different reasons to get a stoma, like Crohn’s disease or bowel cancer or for obstetric reasons.
G: I was just relieved to be honest if it said to me, we’re going to chop off both legs I would have said I don’t care. That takes away the pain to do a heavier light so they went off and I burst into tears obviously and ushered off into it, I finally got my own private room. Do you remember joking and saying, Gosh, what you have to do to get up. So yeah, so then that was the next the next stage really but, I mean we’re only talking about less than a week after having a baby, the fistula tract was actually septic. And that was septic for a year and how on earth I didn’t get sepsis. During those five, you know. Well, I think I must have been pretty close, because I, you know, I just remember just being so weak and unable to function.
P: When they examined you and finally sort of validated everything that you had been describing for days. Did you understand exactly what they were saying like what the process was and what they’re going to do
G: well by sheer good fortune. One of my friends who I met in the city that I was living in had had a stoma, in the last year, but she had a different one she had had an ileostomy, which is the small intestine, and I was going to get a colostomy. So as I was like right, I do actually have a vague idea of what this kind of entails because I’m remember talking to her about a bags and all this sort of thing. I did have like a little bit of an idea but at the same time it was just too much information really
P: Yeah,
G: I mean I knew that a fourth degree tear was bad. I knew a fourth degree tear was like the worst that you could possibly get. Y
P: Yeah, yeah,
G: I mean obviously I wasn’t particularly overjoyed about getting the stoma but you know I just thought, you know it’s only for 12 weeks. Yeah, only for 12 weeks. So this is fine 12 weeks 12 weeks, and then look at all the life.
P: Yeah, and it sounds like a fix. Right, so,
G: yeah, it was just, oh, you know, that’s fine and I thought well you know my friends you had a stoma and, yeah, she’s another great time with it but I thought well, it doesn’t matter, because it’s only 12 weeks. And I was just relieved. I was just so relieved because right we have a solution to my problem, and I’m going to get fixed and I’m going to get better and I’m not going to have this infection, and people are actually going to start taking me seriously. And they did.
P: Yeah and it is so and so, this whole time. Is the baby with you or how’s it going are you breastfeeding.
G: Well I tried to breastfeed, but obviously, because he was premature and like obviously my body just was too busy.
P: Yeah,
G: I didn’t have any milk supply.
P: Yeah,
G: and really, I don’t know what it’s like in America but in the UK, they’re pretty obsessed with breastfeeding.
P: Yeah, same here
G: which I can understand why I know that it is best for the baby. Understand this, but because I wasn’t very well, I didn’t have any sort of energy to to argue with him and say that I wanted to do it in any different way so they I mean, they were trying their best to give me the best chance to be able to breastfeed, but you know I mean I was expressing, and I was breastfeeding. I was like struggling to survive.
P: Yeah,
G: and I didn’t have any milk whatsoever, so so yeah. At that point I was exclusively breastfeeding. After a week, but it was eight days, eight days after the baby we were transferred to a different hospital, so that I could have the surgery. And of course, after I had the surgery, you know, my body was just like, No, yeah, there is no milk. There is no milk, like we have nothing to give this baby. And it was after that that I said right this is it. Like, I am not breastfeeding anymore. My baby is hungry, I’m exhausted. Just put him on a bottle. And I remember the poor little so the first time I had a bottle, he just, he was just so you know, gluging it down. Finally, really full for the first time the poor little thing. And someone else cand do it
P: totally…in the in the US, there is a press now to say fed is best, yeah. Breastfeeding is best because there are all kinds of things that can make breastfeeding just too challenging. And when you go to the other hospital your baby can come with you.
G: You know, my poor husband, so I had to go in the ambulance. Yeah, but my son couldn’t go in the ambulance. and my baby was tube fed. So my husband had to take this tiny tiny little baby who’s being tube fed in the car, the very first time across the city to this hospital neither of us have ever been to. Yeah, and you know what it’s like the first time you, you have your baby in the car.
P: Yeah.
G: One of you is always looking at his breathing. We crushed the chest but yes, he didn’t know anyone that and he didn’t really know what he was doing and he was following the ambulance and so it was just so stressful to get across, city with this time and of course some was tiny as well I mean, 4.7 pound is not small, but it was a small for the car seat
P: ours too when we put her in the car seat we were like, oh she doesn’t fit at all….my baby was born early too and if it makes you feel any better. As soon as my husband dropped us off on like the lawn in front of our apartment. He crashed the car, driving it back to the garage he crashed it like it’s stressful.
G: Yeah, totally, totally. So I had my surgery, but I had to then go on the adult Ward, because the head you know the midwives can’t cope with someone who’s just had a stoma, and they said the adult colorectal Ward can’t cope with a premature baby, that’s been too fast. So he had to actually go into special care. Just so that that was somebody with them all the time, which was you know, that was an eye opener and put things into perspective for us because at the end of the day, we have a lovely healthy little boy. And yeah, I you know was in my wheelchair being wheeled across the sea and we felt guilty actually that he was in special care because he was around, babies who needed to be in special care. Yes, that was, you know, it helps to have a dose of of perspective sometimes I think,
P: yeah, but I’m glad he had that opportunity because this is probably the only circumstance in which you and your husband feel confident that he’s totally cared for by people who know what they are doing
G:Yeah, that took that pressure off…I was on a separate board for two or three days I think and filled with old people’s the youngest person there, and I remember the women on the ward, sort of saying oh you know. Well, it’s worth just got round, but I literally just had a baby, and you have to leave your baby at like eight days old and you know this is a horrific but it decided to probably last because I didn’t really care. Yeah, but you know I can’t be upset about that because I’m just now trying to deal with this stupid bug, that’s on me and leaking all over the place and, and, yeah, couldn’t bend over, I couldn’t do anything. I still obviously had all my tear, my abscess injuries. You know, it’s just the complete mess basically everywhere.
P: That sounds super challenging and I bet you were on high dose antibiotics for the abscess and
G: yeah so, essentially because of the fistula tract was septic but it wasn’t fixed for a year. I had But, basically, a year on metronidazole, which is a really strong. It’s a really strong antibiotic. I was I was basically on that about, well, I was on up pretty much every month for you. It just kept flaring up and getting worse and then it needed drained. As an emergency and hospital and.
P: Wow
G: Yeah
P: So tell me what happens when you pass the 12 week mark when you’re supposed to be going in for the reversal of the bag
G: Well, we didn’t know it was way before that we realized that it wasn’t going to happen, really, because the hospital wrote to me after I’d been home for a month, and up until that point, I kind of just thought, you know, I’ve just been unlucky. This is just what happens sometimes when you give birth.
P: Yeah,
G: but the hospital wrote to me and said, It is not normal. What happened to you, will launch an investigation, and I was like, oh, oh right, so hang on. What do you mean, like the you obviously know something’s up here.
P: Yeah,
G: and I was invited to meet the consultant who delivered the baby, and she was profusely apologetic and, I mean, they found out she wasn’t entirely truthful at that meeting, and I stand by what I said to her I said you know I’m not bitter about the whole thing, you’re a human being at the end of the day and you’ve made a mistake, and yes it has had a catastrophic consequences me but if you hadn’t got my baby out when you did, he would have died. Maybe I should have had a C section but I just I don’t know it just didn’t feel right to me to be to.
P: Yeah,
G: I don’t know angry about it. And I’ve never genuinely, genuinely, never been bitter, just think it’s a pointless emotion.
P: Yeah,
G: it wasn’t gonna get me anywhere at all. So I just, I just kind of accepted that she had made a mistake and it has happened but I didn’t realize at that point. Exactly what mistake she had made until I got the results of the investigation,
P: that seems like a generous response then is also life lengthening for you, because it’s a lot of work to carry around anger for something that happens, that was a mistake.
G: Oh, exactly and, you know, there’s certain members of my family that are extremely bitter about things that have happened in their past life and I’ve seen how that can destroy you.
P: Yeah,
G: and how pointless it is and I just think, you know, just so I’m not, I’m not going to go there, it’s it Yeah, it doesn’t, it wasn’t going to make me any better., I mean some people say, Oh, she was sacked. And I said why would you want it to be so like I would feel awful. I said that wouldn’t make me feel any better,
P: yeah, yeah.
G: But but yeah so then got the results of the investigation and the investigation found the consultant. Initially, diagnose a second degree tear. She stitched me up with this in mind, and then she thought no, hang on a minute. I actually think I’ve got a third degree tear here, so she took all the stitches down and stitched it back up again. She thought I was fixed. So, she’d actually missed the fact that I had a fourth degree tear, and the fact that I had a rectovaginal fistula
P: Gill says that the consultants confused what kind of tear she had with the obvious what kind of tear has that work. Well, I mean, it’s hard to say, Would it be obvious
Dr. M: It’s hard to say would it be obvious….tissue is usually just shredded and bloody and raw and it’s really hard to see clearly what’s happening down there, and it takes, it takes a lot of experience to always be right. And so you can see that the sphincter is torn and you know, I mean you just you just have to be really thorough and do a rectal exam and really check to make sure that things are intact because it’s not so obvious, it’s not just in your face like you have to be a detective to like look and evaluate and really see what’s going on underneath, to be sure that you’re getting the whole story fourth degree tears are not that common… three tears are not that common you know third degree tears are definitely more common, but even that is not as common, and you know you get a third degree tear and you’re like, Oh, is it really a full third degree or is it just partial oh no it can’t be full, no I can’t have done that much damage you know just like symptoms I think we talk ourselves out of how how severe something is, you know, and then once you realize like, okay, it’s a 3rd degree tear, let me fix it,
P: it’s totally interesting to hear because I think as a patient you think everything is over once the baby is out. You think the birth is over, like there’s nothing else to happen, it’s by no means over.
Dr. M: No, by no means over and and you know all repairs are not the same and and all of us do not do the same quality of repair. So I just it just makes me sad. It just makes me sad that it wasn’t fully evaluated it was missed and it Wasn’t repaired.
G: There was a little bit of debate about whether the fistula was caused by the abscess bursting really sure, well when that was caused to be honest, or it could have been through forceps or just not sure. And it was brought up that you know when she wasn’t entirely sure what she was dealing with, she should have called for the colorectal team to come down for advice, but she didn’t she just carried on. And so as a result, because she used all of this tissue twice to create two lots of stitches, it was really friable yeah and it left no viable tissue to do a repair. So she essentially left me a irrepairable, but also on top of that, my sphincter was so badly damaged externally and internally, which obviously is what a fourth degree tear is but the damage was so profound, I couldn’t be repaired anyway. The way that she she’d she’d made it in part like literally impossible, and it was all because she didn’t want she missed it. So, I mean to cut a long story short, I sued the NHS and I won in two years, which is unheard of. Normally it takes six or seven years.
P: Oh wow,
G: but it was pretty it was pretty clear cut, You know she missed it. She botched it. So she didn’t obviously reveal that to me, that would mean. Yeah, but it is what it is.
P: Yeah, certainly not what you expected when you entered this process.
G: No, and I remember things my mother I you know, could I not just had a premature baby did I have to have this on top, you know, a fourth degree tear and then the rectal vaginal fistula, and then abscess and then the stoma….now, still, and because I had a stoma I ended up losing my job, police officer so it was all just like one, it was just snowballing like a wrecking ball..going through my life just throwing things, and yeah, like you say, you know when you get pregnant, especially when I’ve got pregnant so easily and my pregnancy had been so easy. I wasn’t used to being incapacitated in any way, and vulnerable and reliant on anybody. So that was quite difficult. It’s just not who I am, who I have to be.
P: Yeah, I saw on your blog, you mentioned that in the US we call them near misses, I think, which is seems like a silly way to categorize it but there are 30,000 women in the UK who suffered a severe pregnancy complications after birth.
G: Yeah well it’s 30,000 women every year new UK experiences. Well, as a traumatic birth, there’s can be anything really, but they do say I think something like 20% of women suffer some sort of extensive tearing, and that’s a lot.
P: That’s a huge number
G: it is a lot. I mean, my particular injuries. Very very slim chance it’s like naught point 5% or something ridiculous I was extremely unlucky but. But yeah, I think it’s cool as a result of childbirth and injuries as a childbirth is so much higher than people realize. Yeah, one of my things is, obviously I’ve got my blog, I’m really open on talk about my injuries, I don’t really care. Who knows what, but also the flip side of my blog is about the fact that you can overcome all of these things and have a positive and happy life, etc, etc, but a few people have said to me oh you know I don’t want to share your blog with my pregnant friends or with people I know that want to get pregnant, because I think it’ll frighten them. I said this is the problem that we have…that people patronize women, and they think that we’re not strong enough to take information. And I said, you know, I wish I had known all the signs and symptoms, were of a fourth degree tear this down right, the day after having a baby if I’d see brown discharge on my underwear out straightaway would have said, Excuse me, I am demanding to be seen I think this might be possibly to this species. This is not right. Yeah, the end of the day, it’s up to women, whether they access this information that they’re don’t not give it to them in the first place.
P: No, I agree, I agree, more information is probably better to know, especially since you’re supposed to be your own advocate. Yeah, except to some degrees, it is on your shoulders, you know, no one cares about your health more than yourself. So
G: yeah, exactly,
P: you sort of need to do need to know these things and he would never tell like a cancer patient not to look at everything that happens when he had cancer. But yeah, absolutely. Yeah, absolutely. Yeah so I totally agree with your message. And going back to your blog, I don’t know what word to use, other than to say you’re an incredible athlete. I mean all the things you do I’m pretty risk averse and so I’m looking at the list of this skydiving in the triathlon,
G: but I’m, I’m quite risk averse,
P: your about to swim the English Channel that doesn’t sound risk averse.
G: Oh no, I mean I’m nature frightened about the thing that skydivers off awful. Oh my gosh it was.
P: So wait, so tell us about all this, so you’re, you’re not pursuing police work anymore and then and then how do you kind of turn it around.
G: I remember seeing on forums people describing their stomas, and saying, Every time I look at my stoma. It reminds me of a horrific reason why I have it, you know, most people have them as a result of bowel cancer or Crohn’s and colitis or whatever. And I remember reading that and thinking well I am not going to look at my stoma like that, because I haven’t saved. That’s going to every day of my life I’m going to be miserable. Yeah, because I’m going to have. So I thought right I’m not actively not going to think like that. So I accepted my stoma pretty early on in that way. It wasn’t until about two or three years down the line that I read an article by an athlete who has a stoma. And she said she had hers as a result of Crohn’s and Colitis, which is a really nasty disease in the, in the bowel, which people suffer, lots of pain for many years. Yeah, then they get a stoma, and it makes them a lot better. And she said you know I’m so thankful for everything that the stoma has given me..it was like a light bulb, and I suddenly thought, well, hang on, it’s all been about what the server’s taken away, took away my job, it took away my bond with my baby. it took away my lovely maternity leave. You know, it’s, it’s taken away so much. And then I thought, well no, hang on, I actually think about this, what does the stoma do why have you got the stoma. Was that right, well I’ve got it because otherwise I would be incontinent, I’d be pulling my pants. And if that was the case, I’ll be wearing adult nappies or diapers, or I wouldn’t I wouldn’t be leaving the house, so I thought, oh, actually. Look what it’s actually enabled me to do. I can leave the house and go for walks and go swimming and it was it was a revelation. So then I looked into it a bit more, and looked into what stoma products used to be like in the like the 1950s, and what we’ve got now these are amazing, but they’re so discreet and waterproof and you could just do whatever you want with a stoma so then as you start to think right. I am going to go out there and I’m going to do absolutely Every single thing that I’ve wanted to do, because I’ve had. Yeah, definitely. While I was completely incapacitated by the fistula and everything else yeah I just thought, you know, I’m not incapacitated anymore. I just need to get out there and make the most of the life that I’ve got. And that’s not right. Well, the first thing I’m going to do is I’m going to lose weight, cause obviously I was heavily overweight, so I joined as an indoor cycling class. I thought right well I could do that because there’ll be a toilet nearby. It’s not scary. So if, if I get absolutely exhausted after 45 seconds. I can just stop I’m not gonna be in the middle of the countryside. So join the cycling class, and I loved it. I was really unfit though I could only stand up like once on the pedals. But it was actually run by a local Triathlon Club. and I’d always wanted to do a triathlon, when I was younger, because I’ve always been pretty sporty, but I’ve always said you know I couldn’t do that. I couldn’t do that…far too tiring and but then I just started to think, Well, why shouldn’t you like all these other people do traveling, why shouldn’t you have a go and you actually now have the ability to do this, you know, just remember that year when you couldn’t even walk anywhere, or you can’t. And I thought right that’s it, I’m going to sign up to do a triathlon. So I signed up to do a triathlon sorted out my swimming and got back into running and cycling, I mean I wasn’t by any stretch of the imagination, spectacular, but I was able to do all these three things, and I went to this first triathlon and the organizers were fantastic, because they’ve never had anyone with a stoma do it before and I had like 10 million zillion questions about what happens if I got badly, and well I get disqualified about to go and change it and all these sorts of things and, you know, there were really kind and there was sort of saying you know this isn’t the Olympics, you’re not getting this, you know, it will be fine. So I went off and did it and I was just so I just thought right well there you go that’s one thing you thought you could never do. Do not cry describe life is like. It’s all about getting the little bricks, and that was like my first little brick. Yeah, so then I went to get my next little brick, and that was like the next stage talks on I did. And so that was after. After that, the tribe club on mass decided to enter a half Ironman, which is a 1.2 mile swim, a 56 mile bike ride, and a 13.1 mile run. I just thought I might want to get right I’m going to do it so I signed up to do it, but part of doing this. Half Ironman was I had to do open water swimming. Now I’m terrified of open water swimming about absolutely terrified. You will no doubt remember the ridiculous film jaws.
P: Yes,
G: which we all so, you know, I watched that when I was eight, and it terrified me out of the sea for 30 odd years. I had to face up to that fear really to do that section of it, and I did. I mean I went off and did my half Ironman. It sounds really easy but it wasn’t really hard,
P: nothing about this sounds easy. I assure you…
G: And that was actually when I decided to come really public about my story and what has happened to me, because I decided to raise money for the birth trauma Association, So I went in the local paper and all that sort of thing and on the BBC Radio Newcastle and I was out there for the first time with my whole story, I raised 5000 pounds for the birth trauma association which was, I was really pleased with that was like the next brick. And the next one that I wanted to get was I wanted to get back my love of the sea. My love of open water because when I, when I was eight, I was actually learning how to sail, and I was like a little, I was like a little fish, I was always in the water. And I thought, You know what I want to reclaim that and it was all about getting back control over my life. Because so much that had happened to me had been out of my control, I lose my job and my injuries and all that sort of thing. And then I just thought, no, you know what I’m not having fear like me what I can and can’t do. So anything that I’m frightened of. I’m gonna damn well beat it because I’m in charge of my life. So I joined a local group of sea swimmers, and I mean it’s a bit of a joke between us all, because for a year and a half, literally a year and a half, I couldn’t open my eyes when my face was in the water, because if I couldn’t see what’s underneath me, I’d have a panic, like a panic attack.
P: Yeah,
G: I mean I went to the same beach, with the same people all the time, and they were all really really confident, and eventually a friend said, you know, if you don’t open your eyes in the water, you can swim into a rock, it’s actually a practical benefit.
P: Yeah.
G: Okay, so I then tried like three seconds at a time, five seconds at a time opening my eyes and, and then I did it when it was the water was really clear and then I could see that there…then just all of a sudden I don’t know my brain must have just got anything tonight. Okay, it’s fine. Fine, you can do this and I can’t get that really I mean I do still have a lot of fears of open water sample I would never, but I say never, I’m gonna have to swim on my own for the open water, and swimming in the dark… It’s really liberating and exhilarating and addictive actually overcoming things makes you feel really powerful. And the more that I overcome the more powerful, I feel, and yeah I just I don’t like to be beaten, really. A big part of it is, it’s showing my son that what happened during his birth hasn’t ruined my life by any stretch of imagination, you know, it’s actually ended up empowering me.
P: how did you end up skydiving?
G: We only went skydiving, because my two friends were going skydiving, and I had a little thought in my head was, wonder what it’s like everyone says it’s amazing. And my husband said but Gill You cry on aeroplanes and you’re terrified of heights. Everyone says that. And I was like, Yep, I do want to get to like 80 and be like, Oh, I really wish I do not skydive so I mean I did it and I was completely hysterical before. I mean hysterical. And when, when I landed. it was being videoed, and the guy was attached to the guy that was filming that was some exit that wasn’t it was just awful. I’m sure I gave myself PTSD all over again. It was awful. But I did it and so then again I was just like well yeah, we go I never thought I could do that so well I just spent the whole winter in a bikini, three times a week in the North Sea so raising money again for the birth trauma association so that was something I never thought I could do stand out in the cold like that and get my stoma bag and public for everybody to see. So they were two more things I wondered if I was able to do was set that up. Good, gave me more confidence. Ultimately, I’ve signed up to like you said before from the English Channel solo, And I’d be the first ostimate to do so, but I’m saying that really blase but actually inside I’m quite hysterical
P: that this is an amazing list of accomplishments, how long is the English Channel. How wide is it.
G: It’s 21 miles, but you end up somewhere about 25 Because of the current.
P: Good lord and how long is it supposed that take
G: about 14 hours. about…
P: And you don’t eat while you’re in the water.
G: oh no, you do. So there’s, yeah there’s really strict rules on what you do, so you have to wear a regulation size swimming costume. Basically nothing that covers like your legs or arms. Swimming cap, goggles. That’s it. And then once you’ve started swimming you’re not allowed to touch the boat, and no one is allowed to touch you. So to get fed, they get a pole, and they, they use it either a cup or a bowl or something, to give food to you and then you can get it out of there, but you can’t stop to feed for too long because the current so strong that you could be swept like 500 meters, which doesn’t sound like much, but
P: who’s making rules, there’s a governing board?
G: the English Channel Swimming Association because you actually have to have a channel observer with you on the boat, making sure that all the rules are followed, it’s the pinnacle of open water swimming, and more people have climbed Everest than have swim the channel.
P: I bet, good lord
G: Yeah, so when you swim the channel you, that’s a bold start at Dover stove is where you start off and there’s a board with people’s names on who’s from the channel.
P: Wow.
G: Yeah, so you don’t get to put your name on our board unless you follow exactly the same rules as everybody else so you really could do without all of that but wouldn’t be official.
P: That is totally amazing and it makes complete sense to me that more people have climbed in the Himalayas, which I’m superficially I’m sure it doesn’t seem as hard as it actually is although I think people can well understand how hard it seems to swim 25 miles in open water. I am totally gonna donate to that effort, I’m so excited for you. I’m very excited and a little upset that they will let you wear a wetsuit
G: Oh yeah, I know, no, that’s the challenge isn’t it. And this is what attracts me to swim in the channel as well as opposed to something like the Himalayas, because in the Himalayas, you can get to boots and somebody else, you can get a sherpa who’s going to carry all your stuff, you know like, there are ways to make it easier. Yeah. When you swim the channel, it’s, it’s you that you can’t it there’s nothing that you can do that is going to make it easier for you compared to somebody else, you know, other than your training and things like that it’s all down to you. So that’s why I find it so when you cross it, that is, that is your achievement obviously you’ve got your whole team behind you, so they’re part of that but it is you in that channel.
P: So, that is totally amazing. I hope they filmed part of it.
G: I am in the documentary I am being filmed for a documentary so no pressure at all
P: good. Well, again, hopefully they’ll be good editing if it’s necessary.
G: Yeah,
P: I am super excited for you. That sounds awesome. Your story is a prime example of taking the challenges of birth and being resilient with them and sort of turning it all around so I’m so appreciative that you share this story for us today, it is amazing and I think another thing that’s kind of really relatable in your story is that so many women get dismissed when they bring up pain or other elements in the birth that they found challenging, you know almost everyone has a story where that that plays some small role, where they say, Oh, is this, and someone says no, you’re fine, which has to be changed his crazy approach to healthcare, and as in the UK, the US the near misses, which are considered severe pregnancy complications, is like, on the order of 60,000 women every year. And here for sure it’s categorized hemorrhage or hysterectomy or some kind of clot that doesn’t count all the trolls, I’m sure if you counted everything that was traumatic it would be a much larger number. Yeah, but it is something that I think we need to we need to fix for kids.
G: Yeah, I mean at the end of the day with us. We’re the ones bringing the next generation into the world, so we need to be looked after we’re important. The mother is the cornerstone of the family, family unit and if we don’t look after our mothers that we’re not looking after our family unit, and therefore we’re just not looking after society, so it should be discussed it should be talked about and we should be supportive and we should be relieved. We’re not asking for much. But yes, asking for basic rights.
P: Oh completely and my guess is it’s even trickier in the UK because maternal mortality rate is really good internationally. Yeah, yeah, yeah. And that’s when people focus on,
G: I mean since I’ve become more public the amount of women that I know that have contacted me and have said, you know, gosh I had x y and Zed and, thank you so much for speaking out and you just think that so many women are just suffering, suffering in silence and, and the winter bikini challenge that I did, I had a sign on the beach saying I have a stoma, as a result of traumatic childhoods, I’m trying to raise awareness of these issues. The amount of women that stopped me on the beach and we, we didn’t necessarily have long conversations. For a lot of them, they just said, Thank you so much, and that’s all it says. And that’s all there. Needless to say, Well, they didn’t even need to say that but now, and that was countless women that I met, and I just think you know and I just live in the Northeast of England. But I think there is, I think there’s definitely gonna be more more of us being more vocal about it more prepared to Cooper first and, you know, breaking down the stigma of being so public about it and saying, This is not a failure of our bodies here. We’re not bad mothers because we haven’t given birth properly, that’s not nothing to do with that. I think that’s messages gradually getting through to women so that feel more able to speak up. Yeah, you
P: know, the alternative name of this podcast was gonna be, it’s only fucking reproduction. Yeah, right. Yeah. Yeah. To expect to do it seamlessly it’s just Yes, doesn’t even make sense right it’s,
G: yeah, Yeah, exactly.
P: So I totally appreciate your story, I will look forward to posting all, all the snippets I can from your site on in the show notes so people can follow you. Over this Thank you. I’m assuming we can donate to the effort just from the channel right sponsor you, or something.
G: Yeah, so it’s on my website which is www dot stoma chameleon.com It’s on the very first page of it, there’s a little bit of blurb and a link there to sponsor me. It’s actually on a GoFundMe, but you’re not giving me money to do this when all the money is good the charity and I’ve had to do it that way because I’m fundraising for three separate charities, so I was there any way I could do it. So the first is the birth trauma Association. Second is colostomy, okay. And then the third one is the Jacobs well appeal, which is actually really important to me because they send out products and supplies to countries like the Philippines, where they don’t have anything like that. You know kids are using things like plastic bags and tin cans and things like that, Lord,
P: yeah that sounds amazing. That sounds like amazing work.
G: Yeah, it’s so important so you know I just want them to have the products to enable them to live the life that it just even to go out and go for a walk. Yeah, so that’s what I’m fundraising for and that’s where you can find, find the details.
P: Thank you again so much for coming on to share your story,
G: but thank you very much for inviting me on very, very honest we’ve been outstanding you very much.
P: Thanks so much to Gill for sharing her story. You can find her at stomachameleon.com, and follow her quest to cross the english channel, and raise awareness and money for women who’ve experienced birth trauma, and for other stoma patients. Thanks also to Dr. matityahu for her expertise, and for alerting people to the occurrence of fistula, which she said is uncommon in well resourced countries, because if women push for 3 hours unsuccessfully, they can get a C section, but in under resourced countries women can push for days, which she said often leads to death for the newborn and life changing physical consequences for the mother. You can find her organization, beyond fistula at beyondfistula.org
Thanks so much for listening. If you liked this show, feel free to like or subscribe, or go to Gill’s page or dr. matityahu’s to get more details about the incredible work they are doing.
we’ll be back soon with another story about how women handle the challenges they face in their efforts to grow their family
If I had to use one word to describe today’s guest i’d say driven, or maybe fierce–truly, and maybe it’s because of these personal attributes that her life in the world doesn’t match the predictions you might make if you looked at her health status on paper. She was born with a neurodegenerative disease that dramatically affected her mobility–she’s never walked and has been wheelchair bound for almost her whole life…and despite the challenges this kind of condition invites, she’s a school psychologist and importantly for this podcast, had a baby. In general, in the medical community, time and time again doctors have told me that pregnancy is an enormous stress test on anyone’s body–to have her condition and successfully manage a pregnancy is next level. And although lots of people enter pregnancy underestimating how it will effect their body, today’s guest had no such luxury.
You can access Sarah’s class Destination Tomorrow, and her children’s book Differences are Dynamite!
Spinal Muscular Atrophy
https://www.mda.org/disease/spinal-muscular-atrophy/types
https://my.clevelandclinic.org/health/diseases/14505-spinal-muscular-atrophy-sma
https://pubmed.ncbi.nlm.nih.gov/19692244/
CVS Testing
https://www.mayoclinic.org/tests-procedures/chorionic-villus-sampling/about/pac-20393533
Carrier for SMA
Journal article on women with SMA and pregnancy
https://www.jns-journal.com/article/S0022-510X(18)30106-0/fulltext
NIH site about treatments
https://rarediseases.info.nih.gov/diseases/4945/spinal-muscular-atrophy-type-2
Discussion with Dr. Abati about treatments
Audio Transcript
Paulette: Hi, welcome to war stories from the womb. I’m your host Paulette kamenecka. I’m an economist, a writer, and the mother of two kids who very much enter the world on their own terms, as babies often do. But for today’s cast, there was a lot of effort put toward controlling the elements of this process that could be controlled. If I had to use one word to describe today’s guest. I’d say driven early be fierce, truly, and maybe it’s because of these personal attributes that her life in the world doesn’t match the predictions you might make, if you looked at her health status on paper. She was born with a neurodegenerative disease that dramatically affected her mobility. She’s never walked, and has been wheelchair bound for almost her whole life. And despite the challenges this kind of condition invites. She’s a school psychologist, and importantly for this podcast, she also had a baby. In general, in the medical community, time and time again, doctors have told me that pregnancy is an enormous stress test on anyone’s body to have her condition and successfully manage a pregnancy is next level. lol lots of people enter pregnancy under estimating how it will affect their body. Today’s guest had no such luxury after our conversation are back into the interview to add some details about medical issues that we discussed.
Let’s get to her inspiring story.
Hi, thanks so much for coming on the show, can you introduce yourself and tell us where you’re from.
Sarah: My name is Sarah Manuel and I am from Northern California. So, like, not like the San Francisco part of Northern California, like the real Northern California where, you know, horses are our neighbors and we grow rice.
P: Nice, that’s really nice. I’m from the fake Northern California– in the Bay Area, but I’ve driven up to where you are and it’s beautiful.
S: Yeah it is. and we love going to San Francisco too
P: That’s that’s having it all, that’s great. Do you want to tell us a little bit about what you do.
S: Yeah, so I am a school psychologist by day, and on the side I am a life purpose coach, and part of that and I’m really excited to share with people, this course I have called destination tomorrow, which is three different ways to visualize your future so you kind of know what you want your future look like so you know how to get there. And when I made my first vision board that I still have because it’s relevant in so many ways, my life now. There was definitely a picture of a baby on there so I knew as part of the feature that I wanted to create for myself, and I just I didn’t really know how to, how it was going to happen but I knew that I wanted it to happen.
P: Okay that sounds cool. I know you have one child, let’s talk about how you got there, how you made it happen. Before you got pregnant with that child. What did you imagine pregnancy would be like?
S: So I was born with a genetic disease called spinal muscular atrophy, it’s, it has historically been known as the number one genetic killer of kids under two, and I wasn’t supposed to live past age of four or five, and even though I didn’t have that circumstance. I do live my life in a wheelchair, the disease is progressive so I’m stronger today than I will be five years from now, and I am extremely weak so one pound of weight is heavy. The fact that I was, you know, still alive when I met my now husband. I just assumed that I wouldn’t be able to have a kid and he’s the one that says, Sure, you can’t Why couldn’t you. So we started talking to doctors, and it was really frustrating because we would have one doctor say, Oh yeah, you can do this and then the next one day I don’t think so. I was really scared about what the pregnancy would be like we really didn’t know how my body was going to respond.
P: Let me stop you for a second, will you tell us a little bit more about your condition, were you diagnosed at birth or later than that,
S: my mom started noticing something was off. I started pulling myself up, and then I stopped. So I was around say six or seven months when she said take me to the doctor. And when the doctor told her, don’t panic, you’re still within the normal limit so we’ll give it some more time than when she took me back and, of course I hadn’t worked at that point, and we started doing a series of tests so I was probably around one or so. When I was diagnosed and they thought I had the more severe, to type one is the most severe and I have type two.
P: Okay, well that’s lucky, have they figured out it was type two?
S: because I lived.
P: Oh wow. Good lord.
S: Yeah,
P: well that sounds stressful for you and your parents.
S: Well for me I didn’t know any different, because I was so little I know that the types of medical procedures that I had to go through, were very traumatic and painful. And one that I do remember when I was nine years old, they wanted to do a muscle biopsy to confirm the disease but they didn’t have the blood tests and all that back then, so they can numb the skin to do the biopsy, but they couldn’t numb the muscle when they edit because they said that would be it would throw off the results. So I remember it being in the doctor’s office screaming, and they gave me headphones with Smurf music I think that will hold me down, But I really felt them cut my muscle.
P: Oh, I’m not sure I’ve heard of Smurfs as anestesia before.
S: Yeah.
P: Was it from your leg or where was it from
S: Yeah, he was in my left thigh.
P: Oh, wow, that sounds unbelievably painful.
S: Yeah, I get a Cabbage Patch Kidl out of it. So that’s pretty great
P: I remember that being pretty coveted.
S: Yeah, and I got it before the Christmas rush that that season so I was like that, you know, number one, kids school because I have my cabbage patch kid,
P: yeah, that’s, well done on your parents part,
S: yes.
P: So as Sarah suggested spinal muscular atrophy or SMA is a genetic condition that you can inherit, if both parents pass on a copy of a flawed gene. This gene allows for good communication between cells in the brain and spinal cord that affect voluntary muscles with SMA signals from the brain don’t reach the muscles, making muscles weaker over time and limiting a person’s ability to move the genetic test for this condition was developed in 1995, almost 20 years after Sarah was diagnosed, it looks like between 10,000 and 25,000 children and adults have si in the United States in the last five years, new treatments have been developed, the attempt to fix the flaw gene and improve the connection between brain, spinal cord and muscles.
So, so you’re going around to different doctors and some are saying yes and some are saying no and what are those conversations like like are they yes people convincing or they know people convincing or they’re both convincing. What are they telling you.
S: Well, there was one in particular I remember we had guided an appointment and it was like a ninth wedding anniversary and I thought oh this is a great sign she’s gonna tell us to go for it. So we go to the appointment, and she lays out like seven to 10 reasons why it would be really dangerous for me to get pregnant, and then she just says, I recommend that you don’t get pregnant. And I started to cry. And she said, Did I say something wrong. And I’m just looking at her like
P: 7 to 9 things wrong
S: I came to you wanting to get pregnant and you just told me I can’t, and, like you have no emotion, like, so that was like the one that stood out in my mind and it was after that, maybe even a month or two, one of my colleagues at work, was like, why don’t you get another opinion. And I don’t know why we didn’t think about that before but probably because we have gotten opinions less formal, but we’ve gotten opinions from doctors for years. So by the time that he said that, like, oh, well, I guess we could go see another high risk OB GYN and see, because that was the first high risk OB GYN that we thought I said that.
P: Before you get this next answer to the things that she said resonate with what you knew about your body,
S: Not really because I had always beaten the odds like when somebody tells me I can’t do something. I make it a point to go prove them wrong and say, I can do it.
P: Yeah,
S: so it just felt like she didn’t know me. She liked my personality she didn’t know what I was capable of. I was just a name on a piece of paper, and she was looking at the black and white, and not looking at anything else which is what she’s trained to do.
P: Right.
S: It felt like that door was closed pretty tight. Yeah, that’s it, that’s why it’s hit me and stayed with me for so long.
P: So one thing I want to capture is that when I’m reading about SMA, it seems like it would be a real challenge to be pregnant, do you have you see your arms.
S: I, when I look at myself, compared to other people with my disease and my severity. I think I’m, I’m on the stronger side, like I’m able to put my own makeup on, I’m able to write, I’m able to type. I’m sometimes my arms get tired and they just don’t really got extremely tired during the pregnancy and especially as my work year because I work as a school psychologist, so I had summers off, I got pregnant in May so I was that first trimester just finishing up the school year and normally I would just like down a bunch of tylenol or ibuprofen to deal with the arm pain I was able to do that course. So, my arms, didn’t work as well as they normally do. But yeah, in terms of my day to day post pregnancy and pre pregnancy I’m unable to move my arms, but I’m still considered technically quadrapalegic, and say I have such limited use of my music I can’t raise my arm. Like I can’t lift up my elbows. So, the strength I have is like for my elbows to my hands. Yeah,
P: yeah, fair. Okay so now you have been convinced to go get another opinion and is there anything to your any method to your search to find another maternal fetal medicine doctor like I don’t know how I would identify someone who might be more open.
S: So the first one was referred to you by my muscular dystrophy specialist. Then we went to, I think just my regular general practitioner and said can you refer to a high risk OB GYN for another opinion. And so, that doctor was like heck yeah you can do this, you could even have natural delivery and yeah you’re capable, I’ve done it before we can do this. So then it was just a matter of having that conversation of, is the risk worth the benefit. When do we just go for it, or do we not, and after we talked about it for like three months we decided, our lives would be so much one in which by trying and knowing one way or the other than to always wonder and have that void.
P: Yeah. So two questions. Number one, do you have muscular dystrophy community, do you know other people around you with a similar condition
S: at the time and no.
P: Okay, so they don’t have examples of like other women who’ve done it.
S: Correct. But it was interesting because when I was pregnant. There was another category of like the USA weekly, you know weekly magazine that comes in the Sunday paper. Yeah, there were a woman with my my disease exactly that was pregnant and telling her story, and I was like this is like six months long or whatever. So we actually got in touch with her and talked to her and got more information
P: wow, That’s amazing. I did find one article from 2018. That’s a review article, and they looked at the medical literature and obviously not everyone with SMA or neuro degenerative disease, who’s been pregnant is captured in the literature, but from 1950 to 2018. It was 67 people.
S: Yeah,
P: which is not a ton.
S: That’s why at one point we just had to make a decision, my husband and myself to whether to take the risk or not, because they did medical advice but only get us so far we had to just, you know, make a personal decision and, and, for us the risk was worth that the huge reward on the upside of things had worked
P: it is a huge leap of faith.
S: Yes, definitely.
P: What are the risks?
S: death
P: why is it potentially fatal?
S: They were very concerned about my lungs, and if my body was able to tolerate that component of it, there were risk of blood clots and and that kind of thing. Those are the two biggest issues.
P: Okay, well pregnancy as many people say is a stress test so I guess that makes sense. I guess I was imagining that it was mostly muscular and not like organ related.
S: Right, so it’s every muscle in your body right, so an example, my lungs, normally develop but the diaphragm muscles are not because it’s a muscle it’s impacted.
P: Yeah,
S: so my breathing capacity is lower than a typical person.
P: Okay, I apologize for my sixth grade understanding of anatomy.
S: Oh, No, it’s, it’s good to have the questions.
P: Okay, so you decided that you’re going to get pregnant super exciting. And how does that go.
S: It’s couldn’t have been easier we got an ovulation test, found out when I was ready and got pregnant the first try.
P: Oh my God, that’s awesome. That is totally awesome. you know so many people have a tough time getting pregnant and I’m so grateful. In your case that it was not hard at all because you might have attributed it to something else.
S: Right, and I in the back of my mind I’m thinking, okay, nine years of marriage, we’ve never had an oops. Is it because I can’t get pregnant.
P: Right,
S: so it was a relief when, what do you know, I was capable
P: Super exciting and then are you, I’m assuming they put you straight to high risk, you don’t go with a regular OB.
S: It was interesting because I would go see the high risk to do like the CVS testing to make sure the baby didn’t have my disease.
P: Okay so CVS testing or chorionic villus sampling is a prenatal test, in which they take a little piece of the placenta and test it for a variety of genetic conditions, including SMA cystic fibrosis and Downs in Sarah’s case She’s clearly a carrier for the genetics that create a SMA, and they didn’t know if her husband was, it looks like it’s pretty common to be a carrier between one and 40 and one of the 60 people. This test is usually done between weeks, 11 and 14 before amniocentesis can be done.
S: But like the regular OB GYN managed me the entire time.
P: Oh great, that’s nice so it’s less stressful.
S: Yeah, and he was like cuz we were assuming I would just go straight over there, and he’s like, Oh no, we can do this.
Okay, great,
P: that’s awesome. And so what was your pregnancy like were you nauseous in the first trimester.
S: Nope.
P: Nice.
S: Understand how you know that show they used to have, I didn’t know I was pregnant. To me, like, it’s like how do you not know you’re pregnant and except for the missed periods, I wouldn’t have known, like it was the easiest thing in the world.
P: That’s awesome. I think if anybody should be given that gift, it should be used so I’m glad you got it.
S: Yeah, one of the nurses said well we something’s easy for you.
P: Yeah,
S: I saw my muscular dystrophy specialist more often. And I got his attention because these doctors at these teaching universities, once you become someone they can write about their research papers they become very interested in you so that was good that I had his full attention. So yeah, it was, it was pretty easy pretty clear cut.
P: That’s awesome. And so, take us to the day of the birth like how do you know, today’s the day and what happens.
S: Oh well, actually let me back up because there was a time I was maybe six to eight weeks it well first of all, they were just hoping I would get to 32 weeks, because that would be a point where the baby could be born, and the lungs would be pretty okay if there would be a good survival rate, and I was able to work to 35 weeks and I went up to 38 weeks to deliver him full term.
P: Oh, let me ask one question about that. So, when I was pregnant the first time the baby was sitting in a way that made me My husband used to say I sound like Darth Vader, when I was breathing because like the baby was like laying on my lungs, you didn’t feel any of that, that was easy for you.
S: that was easy for me. In fact my lungs got stronger as the pregnancy went on because they did lots of pulmonary function tests on me, and they kept improving the further into the pregnancy I got, like, Wait, this is the opposite of what was supposed to happen.
P: That’s totally interesting.
S: Yeah, it was amazing. There was one night I remember where he turned, he actually turned himself from being head down to going side to side. And at the time I thought maybe I was going into labor you know going into labor or something. And it turned out to be such a blessing because he was just running around because I’m not a big person, so he turned. So he sat sideways in me and it gave us, you know, an extra month in there. It was very painful, when he did that but is allowed for more room for both of us. So he was very compliant… like even when I would have to go to the bathroom, you can just see his little butt stick out so he wasn’t on my bladder. He’s a very good boy,
P: I like that, it starts from the very beginning,
S: yes.
P: That’s awesome. What do you have to do for gestational diabetes I know you have to do the little prick test all the time.
S: Yeah, I was able to manage mine with just what I was eating I didn’t have to take insulin and everything, but I did have to do the blood tests every time I ate, and that kind of thing.
P: I feel like I was partially on that train and so I remember doing all the blood prick the finger prick stuff.
S: Yeah,
P: so that’s kind of a pain but it sounds like it resolved once you delivered me
S: Yeah, it was fine.
P: So now take us to delivery day you’re at 38 weeks. And are they are you scheduled a C section or you’re going to have a vaginal birth.
S: Well we had kept asking questions and talking about the different options, and there was one point when they said, if you have an actual delivery, an epidural isn’t possible because I have scoliosis, which is the curvature of the spine. So when I was 10 they put in metal rods to straighten that and they fused it with bone from my hip so it’s like glued there. So in order to get an epidural, they would have to drill through that it’s like okay that’s not happening.
P: Oh good lord, no thanks.
S: Yeah, yeah. So if I were, it was either, it would either be natural with no epidural or a C section, and what finally made the decision was they told me if something happened, Your our primary concern and not the baby. And it’s very hard for them to intubate me, so that it would take them a long time to do that. So it’s like okay well then that’s just not an option, we’ll do a scheduled C section.
P: Yeah, that makes sense right have as much control over it as you can.
S: Right.
P: Do you have any contractions at all before you go in.
S: Nope
P: Yeah, that’s I had the exact same experience, no contract felt like a business meeting, because like I show up at the hospital and you don’t feel anything and you just like wheeled to your room. Yeah. So what was the C section like,
S: Well, it was in a general surgery, operating room, because they were going to have to put me under anesthesia. But in order to do that, like I said, it takes them a while to intubate me, so I had to be awake while they intubated me, and I couldn’t take any sedatives or anything because it would have affected the baby. So, I am literally wide awake while they are sticking this tube down my throat.
P: That does not sound comfortable are you are you freaked out or how are you handling it.
S: It was an amazing anesthesiologist, he was fantastic, and he talked to me the entire time he went at my pace. They were not interested in rushing things. So, that which is better than because I’ve been intubated while sedated and that was horrible because I would come to and feel like I couldn’t breathe and all that, they would tell me if you’re fine, and it was horrible. So, being awake and having them actually care and talk to me and listen to me was a much favorable experience than the other.
P: Yeah, I mean a good doctor goes a long way. Right, they can definitely take you through some really hard things so I’m also grateful that you had a good anesthesiologist because that’s super valuable in that context. So, once they get the tube can they then like knock you out.
S: Yes, so as soon as they got the tube in. They put me under he was under anesthesia for no more than, you know, four or five minutes right before they let him out.
P: Yeah, the C sections really fast. Right,
S: yeah, yeah. And it was actually the doctor who prefers the C section was the one who told me not to get pregnant and why are you crying, and I made a point I said, I don’t want her to be the one. And I told them why and she happened to be the one on the calendar that day they didn’t have any control over it. So when she came back in to check on me after delivery, you know, it felt kind of like told yourself.
P: She didn’t say anything.
S: Not that I remember now if it stands out. So, if she did a great job sewing me up and everything because you can’t even see it. So, that’s amazing. Yeah, and somebody told me, Well, maybe it did her good to see how she said not to do it and it turned out better than okay
P: yeah yeah I agree. I mean it’s a learning, learning opportunity for her, and in my movie version of your story. She’s apologizing at your bedside, while you’re holding your baby. Just so you know, that’s when I when I write the movie. Yes. So, does it take a while to come out of the anesthesia after those whose section.
S: I don’t really know how much time went by, I remember what you know how they have to do the massaging of the uterus when you have a C section.
P: Yeah,
S: that was killing me, and they’re just like, I don’t understand why and then I realized later, I didn’t have an epidural. Usually these women aren’t feeling this…it was torture. And, but yeah and I remember before I had the baby I told me how it’s been, Joe come see me just stay with the baby. Don’t worry about me. And then in my recovery, I guess I totally flipped and like I want to say my husband. So he was like are you sure cuz she told me to stay with the baby.
P: It is, you know, you never know what you’re gonna feel like in that circumstance, yeah beforehand right so, so that makes sense. And then, and I’m assuming your son was fine, aced his APGAR.
S: Yeah he was, I don’t know what his APGAR was he was in NICU for four or five hours. And the other interesting thing is my husband did not get to be part of the delivery, because it was a surgery. Wait, and they said, you know you we would usually like the husband’s end to be moral support for the wives but you’re not going to be awake so he will not be there, so that was kind of a bummer for him, but he went and spent, you know they came and got him immediately, and they went to NICU together.
P: That’s awesome, did why did your son go to the NICU was because of the general anesthesia.
S: Yeah. Yeah, they just wanted to watch him, and he was only in there for a couple hours before they moved him to the maternity ward without me.
P: That’s like a drive by, that’s nice.
S; Yes.
P: And then what was that what was your recovery like in the hospital.
S: So they insisted that I go to ICU that night, just to be extra cautious, and at first they won’t even let me see the baby, and my husband’s like, No, you need to get her up here so she can see her son, so I got like five minutes in the hallway with our son before they took me to ICU.
P: That’s real hard right…that’s a hard thing to be separate in the beginning,
S: very hard. And I remember like I was wide awake in the middle of the night, they tried to bring in some pumps to help me get that going. But I didn’t have my baby, which that’s all I want it was my baby,
P: yeah, yeah, yeah…And so, how long were you in it, I see I’m assuming they just don’t want babies in the ICU.
S: I guess and I don’t remember them saying why they just put him in with my husband in a maternity room on the, on the ward. So and it was a private room because we got lucky with that. Um, and my husband like looking back, he’s like, I was kind of happy to have that time because you got him this whole nine months. I got him.
P: That is kind of nice for your husband. Yeah, I interviewed someone else who was in the ICU after her birth and she said they had a rule that there were no babies in the ICU because they’re worried about germ exchange between people in the ICU and a new baby and
S: that makes sense. Yeah.
P: So, I’ve definitely heard that that part before. And so, like, did the pumping work, how does that how does that go,
S: it didn’t go very well. It just, I tried once or twice but it didn’t work
P: And did you have any notions of like I definitely want to breastfeed or were you
S: Yeah, I was set to where this was going to happen. And we, I tried many times, it just didn’t, and I just finally said okay, this isn’t what’s important. You know, I let go of it, because it was better because my husband was going to be the one to get up in the middle of the night to feed. So it was,it was better.
P: that makes sense. Yeah. And did you have any like notions of like I definitely want to breastfeed or were you
S: Oh yeah, I was set to where this was going to happen. And we, I tried many times, it just didn’t, and I just finally said okay, this isn’t what’s important.
P: That’s amazing perspective because I’ve definitely I’ve seen my friends struggle with it, but there is like a lot of pressure to breastfeed just everywhere. So it’s a little bit tricky to to carve your own path in the beginning, so that’s hard so kudos to you for being able to give it up in a, in a way that makes sense for your family.
S: Yeah,
P: all those formulas have DAPA now and all the, you know, stuff that breast milk has and certainly it’s not exactly the same but it seems a much better substitute than maybe like our parents.
S: right I would agree.
P: And so, what was your recovery like when you got home,
S: I was pretty weak at first, but you know within a week or two I was fine like I remember he was born December 9 And my mom worked at the school I grew up in, so they had a Christmas program, like maybe a week later, and I remember we took him there so he could see Santa.
P: Wow,
S: yeah so we can have our first picture with him the Santa, because I didn’t want to take him to the mall yet.
P: Yeah,
S: and I would be kids good I worked with the school here as a school psychologist so all the kids wanted this you know they saw me pregnant so they were thrilled to see the baby and so that was fun. But yeah,
P: awesome.
S: I’ve been around and doing stuff.
P: How big was he when he was born, I neglected to ask
S: he was five pounds five ounces.
P: So that’s a good size.
S: Yeah, 18 inches tall, and he had the biggest feet it’s like his feet were the only things that had room to grow.
P; That’s very funny.
S: Yes.
P: And how old is he now.
S: He is 10
P: Wow, awesome. So what’s the into
S: He loves cars like Hot Wheels car video games Minecraft, your typical boy step Roblox that kind of thing.
P: That’s super cute both of my kids were addicted to Minecraft, at some point.
S: Yes, I think that’s a right of passage
P: no kidding. That’s very fun. So, what an amazing and triumphant journey you have had here. I’m so glad to hear it and I hope that you are, you know, shouting from the rooftops so everyone who follows behind you knows like yes this is possible or get a second opinion.
S: Yeah, and since then I’ve met up on Facebook with other women with my disease who have also had babies. So, if that had been the case, I wouldn’t have felt so alone so like we’re no charting new territory so that I think is helpful too.
P: That’s amazing. So, I am interested to hear if you could go back and give advice to your younger self, what do you think you’d tell her.
S: Just don’t stop believing it. And it was interesting because as soon as I got pregnant, I had this sense of peace come over me that the baby was going to be fine. So I wasn’t really stressed out, there wasn’t really a point where I said oh I wish I wouldn’t have done this, I just was very calm and like excited and like I knew everything was going to be okay. So, I think I would go back and tell her, everything’s gonna be okay, right, you can do this, and you’re going to be fine.
P: So why don’t we talk a little bit about your book
S: in the spring, I put out a children’s book, I have actually written in grad school, so it’s been, you know, just kind of sitting around for 13 years and I find the guy the illustrated consequences are tiny. And it’s about some animal friends who, instead of being embarrassed or ashamed that the ways that they’re different. they’re different in all different ways, they, they look for the differences and other people and they encourage it and celebrate it, so that they are, you know, proud of who they are as individual and that, you know, together we’re stronger with our differences and trying to be just like everyone else.
P: That sounds super cool, and you’ll send me a link and I’ll people will be able to find it.
S: Yeah, absolutely.
P: Okay, awesome. That’s awesome, that’s so that’s such a great story. I totally appreciate you sharing it with us. Thanks so much for coming on the show.
S: Thank you so much for having me.
P: One thing I didn’t understand before I became a mother is that becoming apparent requires a lot of toughness, both physical and mental and serious toughness have been tested her whole life. She seems wildly overqualified for this job . Her story is also a good example of what it’s like to live on the edge of medical understanding. As she said she and her husband just had to make a decision to have the baby at some point, because her experience is unique enough that their decision, couldn’t be guided by medical expertise. Thanks again to Sarah for sharing her amazing story. I’ll put a link in the show notes for Sarah’s class destination tomorrow, and her book differences are dynamite. Hope you enjoyed this episode, feel free to like and subscribe and leave a review if you can. It helps other people find the show. Thanks for listening. We’ll be back soon with another story of overcoming.
The project of starting a family involves some elements that are totally under your control (when you start trying to get pregnant, the doctors or midwives or doulas you choose) and other elements that you expect to be uncertain: what the pregnancy is like or when the baby comes. But for today’s guest, almost every element of the process carried uncertainty: when she was pregnant, if the pregnancy would take, and if her other organs would behave during the pregnancy, to name a few. She weathered all these life changing events, some stressful, some lovely…and now has layered on top of them the blissful experiences of her three young children.
Surfactant and steroids
https://www.verywellfamily.com/what-is-pulmonary-surfactant-2748539
https://www.verywellfamily.com/steroids-for-lung-development-in-premature-babies-2748476
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6464568/
http://www.embryology.ch/anglais/rrespiratory/phasen06.html
Rate of miscarriage
https://www.marchofdimes.org/complications/miscarriage.aspx#
Precipitous labor
https://www.healthline.com/health/pregnancy/precipitous-labor-when-labor-is-fast-and-furious
Audio Transcript:
P: Welcome to war stories from the Womb.
I’m your host Paulette Kamenecka.
The theme of today’s story is overcoming. My guest wrangles with miscarriage, organs that misbehave during pregnancy, preterm birth and placenta problems over the course of all of her pregnancies. In each challenging situation, she prevails. And on her list of upcoming adventures, she will include parenting adolescents. After we taped our conversation. I went back into the interview to include some medical information, and also have the commentary of a fantastic OB who can answer some questions and give us medical context.
Let’s get to the interview.
C: Hi, my name is Charlotte Hornsby, and I’m living currently in Madrid in Spain,
P: and how many kids do you have.
C: We have three children. I’ve got a daughter who is 13 and little boy, two little boys. One who is six, and another one who is seven turning eight in October.
P: before you were on this journey to create a family. I’m sure you’ve had some idea about what pregnancy would be like, how would you imagine it would go?
C: So, I was never somebody that really thought too much about you know the marriage and having babies and having family. I’d always known exactly what I wanted to do as a career. Also, so when I was around 16, I started my period when I was about 14 to an A 13. I had a lot of issues with with periods. I was having you know very long periods, short periods, two in a month, sometimes not one for a while, and I was told that the likelihood was, I would have issues getting pregnant, if I was able to get pregnant. And that was when I was around 16,16 and a half, something like that. So, I think in the back of my head. If it hadn’t happened. You know, it wasn’t something that I dreamed of just in case…. you know? and then, as you know, as often happens, you meet somebody, and it just clicks. You want to have children with these, this person. I’m a very independent person. And I’m also quite laid back so again I wasn’t planning I wasn’t thinking too much about pregnancy, I just presumed, everything would go okay. And finally I, you know, I have quite a strict Catholic upbringing. So, I never talked to my mom about pregnancy. You know, giving birth, nothing. Literally nothing. In fact, when I was asking my mother about childbirth. When I, you know, when I was pregnant and she told me it was like a bad period. That was, you know, and that’s sort of– I can set the scene for how much discussion went on in my household about pregnancy and babies…. it just was…It was just something that happened you didn’t talk about it. The woman dealt with it. So that was my kind of background to to pregnancy. Yeah.
P: Wow. All I can say is wow. Do you laugh with your mother now about the bad period story or no?
C: After I gave birth, my to my daughter and I did call her on the phone and I said to her, I don’t know what kind of hell of a period you have. And that was nothing like my birth, and she was just like I don’t know what I could have said to you, you know, what am I gonna say it’s really painful. Okay. We do laugh about it now. Yeah. I’ll try to speak more to my daughter about it but then I got…
P: I feel like that’s not much preparation.
C: I know it was no preparation, I moved to Spain when I was 26 . And it was just a few years later that you know I got pregnant for the first time, but no one in my group of friends had had babies yet. So, you know, I was one of the first going through it. I think maybe if you know you’d had a close family member, you know a friend who’d had a baby you might be a bit more aware of everything that goes on. You know, you see the Hollywood movie idea of morning sickness or all of that. But the actual practicalities of getting pregnant and being pregnant. I was pretty. Yeah, pretty naive, let’s say.
P: So, with, with all that preparation Did you get pregnant, easily, the first time?
C: Yeah, like, so I got pregnant them the first time around, 28, and I was working, we were both working, my husband and I were both working we’re both traveling, and I didn’t really know I was pregnant for probably about eight nine weeks something like that maybe a bit more, because I’ve had such irregular periods.
P: Yeah,
C: so, you know, it didn’t surprise me that, you know, I hadn’t had a period. And then I think probably around six weeks, five weeks, something like that. I had that implement… implementation bleeding I think it’s called. So I presume that had been my period so I really didn’t think anything of it I didn’t have any symptoms let’s say, for a you know for a while, and then around eight nine weeks it was like, Okay, well, still haven’t had a period. I took a pregnancy test, found out we were pregnant. And then, I don’t know why we just sort of carried on, like you know it was okay, there’s nothing we can really do you know like do you okay you know we were happy, but we were both very busy with work. So, and let’s say because it wasn’t something we talked about previously or something we talked about much with my family. Yeah I told them, but then it wasn’t really a discussion, much more after that. And I just presumed everything would go, fine, you know, and, you know, when I needed to worry about it. I would start worrying about it. And then I went for the scan in Spain, it’s, it’s quite a controlled process, you immediately go with a doctor or a gynecologist. It’s, you know it isn’t a midwife led it’s not a, it’s not really a woman controlled thing it’s like, you will go and see a gynecologist. You will go and see them every month, you will see this, and my gynecologist was a man. He was an older man who was probably in his late 60s man, who was considered to be a very experienced gynecologist in in Barcelona, and I would imagine that he has been delivering babies for the same way for 40 years.
P: Yeah.
C: You didn’t ask any question you know it was really yeah just, I’m telling you what to do, I will tell you, everything’s okay. Yeah. I was so around nearly 16 weeks, I had this spotting, you know you read as you do on the internet. Fatal thing to read on the internet. They say, you know, rest. So we did bedrest, but unfortunately, the bleeding got heavier very very quickly, and I miscarried at 16 weeks, and I fully miscarried, I…..ahhhhh….I was in the bathroom in a toilet, you know, and you can feel everything passing. Feels like cramps. I didn’t go to the hospital. We actually. I don’t really know my husband didn’t really know how to cope with it, either. And, yeah, it was such a surprise because you’d never think…no one ever speaks about miscarriages.
P: Yeah.
C: And, you know, even if you know everything about it you only speak about pregnancy and babies and, you know, breastfeeding and. So, after it happened. Well, you know i. It was very it was very upsetting. But we didn’t really get we never really talked about it as a couple, too much. And what we did do is try and get pregnant very quickly afterwards. And I wanted to get pregnant very quickly afterwards. And I decided to change my doctor, as well, because I had, you know, after I miscarried obviously we did go to the doctor and I did go and see him. And yeah, I mean he is. There’s nothing there you know there’s nothing we can do. So, I don’t think doctors either are trained to know what to do, or to say, with a miscarriage, like it was very much and you haven’t had to go to hospital you haven’t had to you know it was even though it was quite late, 16 weeks or,
P: Yeah, that is late.
C:I didn’t have to deliver I didn’t have like contraction pain.
P: I checked in with an OB doctor Nicole Wilcox to ask about the medical training doctors receive to manage news of a miscarriage. Hi doctor Welcome to the show.
Dr. Wilcox: Hi, thank you for having me.
P: I’m assuming doctors are trained to talk about miscarriage or what’s your experience.
Dr. Wilcox: Yes, you know, I think we all, you know in training experience having to break that news to a patient. Of course it’s a devastating thing. And it’s uncomfortable, but at least at this you know at this point in time, I think you can’t go into the field of Obstetrics without, you know, knowing that this is part of the job you know and you know it’s it’s not so much book learning as on the job learning how to, you know, gently break news. You know, prepare somebody give them time, you know, to let the information sink in and watching other people. You know what, you know, watching your, your teachers and your attendings sort of model that for you. Yeah,
P: yeah, that sounds it’s hard on all ends.
Dr. Wilcox: Oh yeah, yeah, yeah.
C: And I think also I probably gave the impression of I’m fine. You know, I’m coping with it. Let’s move on. So we did, and I got pregnant again. I think I took a test when I was about six weeks, because I think I was more conscious about it this time I probably was a little bit more on it. We went to do the scan at around 10 weeks which is a little bit early, you know they say really you go to do a proper scan to see the heartbeat and everything around 12 weeks here. But I think I was probably a little bit more keen, and I know that miscarriage in my head this time was really yeah it was in my head.
P: Yeah,
C: that it never had been before. So actually the pregnancy wasn’t too bad. I had a bit of morning sickness…You know nothing, nothing really terrible. I followed on this book. What to Expect When You’re Expecting which I hadn’t done the first time.
P: Yeah,
C: so as you can see I was really on top of it. I think I probably was killing Nuno with. Oh the baby is now this size and that size. Now, you have a bit of like a probably in my head I had a bit of a worry when I was getting past that 16 weeks stage.
P: Yeah,
C: But I was going to a female gynecologist. She would be scanning and weighing, which is very important in Spain, they like to weigh you every time to make sure you’re not gaining too much weight. Again, very different from the UK, like you’re really only allowed to gain, no weight in the first trimester a few kilos in the second and a few kilos in the third, and they’re really on top of weight gain in Spain…
P: because it’s not healthy for the baby or ?
C: not healthy for the baby not healthy for the mother. So really are it’s very much like control, I think that’s what I remember more than anything is being weighed a lot. And so, then we just everything was seemed to be going fine didn’t have any real problems. We’re still playing squash at around 24 weeks…. that my husband and did say no, no more, you’re, you are very competitive so he banned squash at that time, and then we decided to go for a weekend last weekend as a couple by ourselves we flew into Paris and midway through dinner, you know, instead of sort of complaining that some pain in my stomach, we got home, we see a large red lump hot right on my side, right side my body, and we call the doctor in Paris. The doctor came, so they came to the hotel, as opposed to us going to the hospital. And then I actually got taken in an ambulance to the American Hospital in Paris, and they said it’s your appendix. I was now 28 weeks pregnant.
P: Wow….
C: you can’t have the same anesthetization that you would do it just everything is is a lot more complicated also apparently if you, if you do too much the body begins to make the contraction to start expel it you know, just,
P: yeah.
C: I remember it. You have local.
P: That means you’re awake.
C: You’re, you’re awake. You’re awake, which is you can’t feel anything. You can’t feel anything. But yeah you’re awake through it because they’re really monitoring, everything. I think it went fine. But yeah, I started contracting, which is quite painful, on an open wound.
P: Ah, God, wow
C: so that was that was quite painful. and in hospital for around 10 days afterwards, just because I was contracting so much I couldn’t be moved, they were giving me injections to try and stop my body from from contracting from the body from contracting. Then, we, we had to fly back to Barcelona.
P: So the drugs they gave you stop and contractions?
C: Yeah, they do, they stop. So, but you have to take them, I can’t remember how many times but I know I was injecting myself, my leg probably twice a day I think I, you know, I can’t remember exactly but I remember it was a couple of times a day that I would have to give myself an injection in my leg, and I was in bed rest, essentially, I didn’t go back to work in the office, just because I could not be walking around. After you know after this operation, they gave me steroids for the baby’s lungs. I think at around 33 weeks, something like that.
P: Breathing problems are the main cause of death and serious health problems for preemies and here’s why. The lungs are still maturing in the third trimester. In the last few weeks of pregnancy, alveoli–the tiny air sacs that fill with air when we breathe– are forming. To work efficiently these air sacs need a chemical called surfactant, and they don’t have enough of it until around 36 weeks. This is where steroids come in, they can help fetal lungs make surfactant so the preemie can breath more easily when it’s born. Steroids also reduce the chances of the premature baby will encounter bleeding in the brain and serious bowel complications.
C: And they said that they were going to stop it at 34 weeks, and two days, because at 35 weeks she would have been okay for delivery but they were hoping that maybe after that period of time, my body might, you know, hang on a little bit longer, so I stopped the injections, literally within two days my waters broke in the morning, so I immediately started. So my waters, my waters broke middle of the night…
P: You knew what it was at this point? we’re on top of things….
C: yeah, now I’m okay with pregnancy. my waters broke, I called my sister, sister and I had always agreed that we would be each other’s birth partners.
P: That’s awesome.
C: So, yeah, it was, you know, it was a really sort of we’re very close. We’re just two years apart you know she was, she sort of gets me like very well. So we had agreed this. However, I had found the pregnancy process in Spain very different to how I had heard about it in the UK. So in the UK you’re encouraged to write a birth plan, and you know it has this idea of whether you want music, or the lights, or, you know, do you want your partner there? you know just has this whole scene setting idea so.
P: Yeah
C: Because I know my Spanish was okay, but it wasn’t fantastic, I probably been reading more from the NHS than I had been from Spanish sites, so I had actually said to my doctor. Oh, when do you, you know, when do you want my birth plan. And she said to me, Well, the plan is that you give birth. And I was like…
P: Ha, ha, oh you read it!
C: Exactly. Thanks, You skipped to the good the part. There was no birth plan in Spain, they don’t care. The, the plan is that the baby gets out safely. That’s it. So I insisted that I wanted a doula, because my doctor had warned me that Alistair my daughter was likely to come early, I knew it was going to have to be more medically controlled, then I would have liked you know I had a bit more of an idea, because I knew she was very little. So I worried about if I was taking drugs, what effect that would have on her. And I worried that it had been quite a stressful pregnancy, so I had tried, as much as I could, in a pregnancy that wasn’t going perfectly, had had a lot of medical intervention to, to bring in some more natural kind of support. So my doctor reluctantly agreed to have her there. She came to my house, my husband was traveling. So, you know yeah it was something…. I hadn’t really wanted him at the actual birth like I expected him to be there to get us to the hospital. My sister to be in the room and for him to be there once the baby was born, but I hadn’t really wanted him there at the actual birth, and he was fine with it. He was not fighting to be in the room, but they did presume he would be in the country. Ha, ha…
P: ha, ha…
C: The doula, she came, and I had gone back to sleep after waters breaking. I’d had a shower. You know I’ve been eating, relaxing. Thinking everything was going pretty well. And then at some point we went to the hospital and it does change everything. You go from feeling very much that you’re in control and in and relaxed, to feeling. Yeah, this, you know, this is serious now this is, I don’t know it it just takes you out of your control zone your into someone else’s place.
P: Yeah, it feels like something’s being done to you.
C: And it was, for sure, it was right get onto the bed you know I luckily had the doula that we were both saying, No, she wants to move around. She wants to go on the ball you know this.
P: Yeah, yeah,
C: that you can sit on…and I I locked myself in a toilet at one point, there’s you know I went through I’m sure what every woman giving birth goes through it’s coming out the wrong way. You know it’s breaking my body, and I’m sure it’s going through a bone or, you know, a little bit of the plug or something comes out, I think I’ve done it now you look in the toilet to see if you’ve given birth,
P:….or a very bad period,
C: or very bad period yes stinging. It was stinging…. I didn’t have an epidural I had some painkiller, put in the nurses were pushing and pushing me to have some painkiller. What they want is the woman to be in bed with an epidural. And, and to get the baby out.
P: Yeah,
C: well they don’t want is the woman to be walking around taking a long time to have a baby.
P: Yeah,
C: so, you know, I really can’t stress enough how many times we had to say, No, we’re fine. No, I’m okay. No, I don’t want the lights turned on, no I don’t need that, you know, so now it progressed, it wasn’t that long…she took a couple of hours from waters breaking from when the contractions really started my sister was there. Yeah, and she came out she was very little. She was very little she you know she was under a kilo and a half. I think it’s like….
P: It’s like two pounds and change or something…
C: Yeah, I think it’s under three pounds, which is tiny. You know when my husband saw her he kind of freaked out a little bit we have a photo of her next to the old Nokia phone.
P: Oh wow.
C: She really is. She’s, and she, she looked very alien. She looked as if she wasn’t ready to come out you know her eyes were still very pulled she didn’t have any fat buildup on her body, and she didn’t have a suckling motion.
P: Yeah
C: so they tried to put you in, put the baby to the breast, because I had said and luckily the doula again. And I was like, No, she wants to breastfeed because they were very keen to get her feeding with a bottle.
P: Yeah.
C: And we were like, No, no, we would be trying to work her jaw. We express milk and pipetted it in… in Spain they take the baby away, you’re in your room, they take the baby away they bring her back. When she cries, and then they take her away again. And you have to insist that you don’t want cologne on the baby.
P: Oh my god.
C: Yeah. And they were very concerned that she wasn’t having her ears pierced despite being so tiny, because otherwise how would anyone know that she was a girl.
P: Also funny
C: It’s a really, really strange. You know, but in the end, she had a lot of good care, I have to say and I did feel very secure that if anything had gone wrong, we would definitely be in the right place. And considering her weight considering you know how early it had been considering the drugs that had to be taken I think all of those obviously had an impact on her for how much she’d grown. You know, we came out of the hospital, were able to take her home. And she would sleep a lot. We had to like wake her up to try and feed. But, yeah, I mean it, it went pretty well considering first baby, and that you know we were by ourselves. touchwood. She’s a very healthy very strong 13 year old. Now,
P: that’s a very good ending.
C: That is a good ending!
P: How old does she get before you get pregnant again?
C: So I wanted this two year gap that I had had. So probably yeah she was about 17,18 months when we started trying again. And it just didn’t happen, for whatever reason, wasn’t happening and it was probably it was like four years down the line, it’s still not happening. The doctor you know we were still seeing the same gynecologist and didn’t seem to be any rhyme or reason for it. I did have my mother telling me, you know like, as mothers like to do. It’s really strange because you know I just had three babies every two years and no problem and if I’d wanted to have more then…..thanks for that ever so helpful. Yeah, great advice. Don’t make me feel bad, you know, I think, I think, in a way, my husband probably would have been okay with just one child, like, you know, He may have wanted a boy, but she was such a good child, like she really, you know, she didn’t cry she did everything you would still she was just so easy and so nice that we weren’t maybe stressing as much as if she’d been really difficult and us thinking oh my god we really need to have another one now otherwise we’re never going to do it. So around. Now you get four and a half years. I got pregnant again. I didn’t feel anything. Didn’t have morning sickness didn’t have issues, was going to the same doctor. Everything seemed fine around February. We went to ski, well I wasn’t skiing, but you know, and I was 17 and a half, nearly 18 weeks, just here just in Andorra, and I began to get cramps, and no spotting at that time but yeah the cramps were bad so it was it was weird. Again, weirdly after having a successful pregnancy hadn’t been thinking of miscarriage, like, just didn’t come into my head began to get some spotting. There was spotting. And it got pretty bad. So we decided to go to the hospital because it wasn’t progressing like it had the first time, I think we actually called the hospital and they said to come in and Nuno couldn’t come into the room with me. It was a public hospital because we weren’t in Barcelona with my doctor there were two, two nurses there, and I you know I knew something was wrong, because I had, you know, when you read on the internet, tells you about spotting.
P: Yeah,
C: and it’s about the color of the blood, and you know, this is red blood. This isn’t old.
P: Right. Right.
C: You know something’s wrong. And they decided to do the scan, like as if you were having a scan. You know, like a pregnancy scan, and there was no sound like no heartbeat. And then they turned. No, you can see on the screen, and that they you know they turned the screen away afterwards, and the doctor said “No hay nada”, there’s nothing there. I had to have a DNC, which I use the term as if I know exactly what they do, I don’t know, I decided never to look too much, what they do. I know it’s used when you miscarry but you don’t have a complete miscarriage, right, I, I found this miscarriage, even though it was a very. It was a similar time to the other one maybe a little bit later. Very difficult, very difficult, because, because I had to go to hospital.
P: Yeah,
C: because I had to have intervention.
P: Yeah,
C: to finish the process. It felt a lot more like my fault, like a choice I had made, even though it wasn’t. It felt like I had intervened in the pregnancy. And, which is crazy because, you know, I had done the same as I’d done with the other two, but I found it really tough. I found it really, really tough.
P: I checked in with Dr. Wilcox again, to find out how patients commonly respond to miscarriage.
Dr. Wilcox: First thing patients want to know is what they did to cause it. Yeah. And they essentially it’s hardly ever the case that they’ve caused it. So I always make sure to review that with them to say it’s not because you exercised, it’s not because you had sex it’s not because you ate sushi. Yeah, you know, or you took Tylenol or whatever it is, that, That, that, you know, we know that this is just, you know, one in five pregnancies this happens. And you have to empathize, you often have to go over that several times for them to really hear it it’s just like hearing you have cancer, you know that, you know, very often everything else, after that, you know, they’re there you know you’re not hearing it.
C: And I had contractions with it, I, I didn’t have to deliver like you know these horror stories. I didn’t have any of that.
P: Yeah,
C: I just do remember that I remember having having this scan, which you associate with a good thing because it’s when you find out you’re pregnant. When you first hear the heartbeat.
P: Yeah,
C: you know, all of those positive things them doing a scan, and not turning the screen away and not being trained to turn the screen away.
P: Yeah.
C: That’s something…..
P: Right. Yeah, it is super hard. Yeah, I feel like we would all be a little bit better served, obviously if people spoke about miscarriage but also if you knew that the miscarriage rate was relatively high it would be hard to blame yourself for the outcome. Because …
C: exactly because you would understand that this happens so much.
P: Yeah, it’s so frequent that that are like the implementation isn’t quite right or the or the cell division isn’t quite right…
C: and that you know and you can read about, you know the fact that it’s nearly always fetal abnormality that has caused, you know, the miscarriage and, you know, after having one, you obviously do read a lot. But, yeah, having having to go through a procedure to clear things up to, to finish the pregnancy was just a very different, a very, very different experience, and I don’t blame the nurses because they are in just a general Ward, you know, they weren’t…
P: They weren’t ob nurses yeah
C: you know it’s it’s literally just a woman comes in, far along in the pregnancy business, and they knew I mean I guess they knew from what you know what was happening. Yeah. Pregnancy had already completed as I think. So, we didn’t get pregnant immediately after that, again, we didn’t really speak about it, we don’t speak about miscarriage. And it’s funny, even after going through two I don’t think it’s something I would probably tell my daughter that it happened to me, but I’m not sure I would go into too much detail about it because, much like pregnancy, I do feel it’s something very personal. For each woman and just presuming that something that’s happened to you, how it’s going to be for someone else maybe, you know I would tell her it’s happened so she’s aware.
P: Yeah.
C: But I think it. You know, maybe it will be really tough for her and the fact that the first one I coped with okay you know wouldn’t help or the fact that the second one was only bad because of that. So, you know, so it’s a hard subject. It’s a very hard subject and yeah I don’t, we don’t speak about it really ever. Anyway, I did get pregnant again, we’re still in Barcelona, same doctor, a lot of intervention, a lot of I had terrible morning sickness. You know I’d be sitting on a sofa, turn my head and vomit, like for nothing. So, I had to go into hospital because I was so dehydrated. It was the middle of summer in Barcelona and it’s really hot.
P: Yeah.
C: And you know, this time you have a child, so you don’t rest as much, but the difference in insane in a good way, maybe, is that they also don’t think women should suffer because you’re pregnant. Yeah, so they will give you medicine to help with morning sickness, which I found out later in the UK, they do not do, it’s this stupid idea that I think it’s only because women are pregnant, that you get told Well, a healthy pregnancy will have morning sickness, which is rubbish, that you were getting sickness and have a, you know, an issue. Yeah. Absolutely none but you know it’s some of these ideas that woman need to suffer and it’s just part of this natural process that we have to go through, but I had various minerals or whatever that were low so I had to take more medicine. I was being monitored, a lot I was being monitored on a monthly basis, but I actually often have morning sickness was under control which I think I suffered for until I was about 16 weeks. When I went to hospital, probably till about 24 weeks, I was having to take medicine to stop myself vomiting. But after 24 weeks. It was okay. And we were quite excited, we didn’t know what it was going to be, which we had known with Alicai because the doctor in France had just said, Oh, she let go. And I knew, because of what happened with Alicai think that the likelihood was you know it was going to be medical controlled throughout. And so, and when that started two weeks before. Just a checkup. I felt fine been working, and the doctor said okay, you know you feel like okay, well, fine. Okay. Yeah, the heartbeats pretty weak. Okay. Have you noticed the baby moving. No, but, you know, very busy and working full time child, you know, traveling, and nothing. So they gave me a juice drink baby didn’t respond. They did this a Doppler where they see the oxygen and, and she said okay baby needs to come out. I’m like 32 weeks. So no, she needs to come out a he and the baby needs to come out to this, so I’m like, Okay, let me call my husband and I will go get my bag you know that I’ll be whatever I’m thinking, can’t be that I don’t know I just didn’t really hit me what she was saying, you know, so she could no, it needs to come out now. So, I had gone to the hospital with a girl from the office, who was my assistant. Who’d never had a baby, who wasn’t married, who knew nothing.
And I’m like, oh, okay, so I’m there writing an email to China, which is my job. And, while they and I think I just got into the zone of this can’t be happening it’s not, it’s not real, because they broke my waters, because she wanted to see if he was the baby was actually quite a good size, like, you know, for the 32 weeks he was quite.
P: Yeah,
C: good considering very early. So, waters broken, and she said to me, you know like, you need to take this a bit more seriously. You’re about to have a baby. I don’t know why I, you know, it just wasn’t computing. Anyway, I had to go into another room, they prepped me for cesarean, because there was something wrong with the baby’s heartbeat and there was something wrong with the placenta. And again, because I don’t have that much knowledge and I still didn’t have that much knowledge, you trusted I just trusted the doctor I just did what they’re telling me I had the epidural. And they began to take oxygen levels, from the baby’s head, but they did say that he you know he was progressing down there, because he wasn’t in place to come out,
P: right, right
C: but once the waters broke. Luckily probably because he was so small. You know, he was moving down. So they said okay looks good, but there is this time, where it’s. If you go too late and you have an emergency scenario, it is more complicated because the baby is too far down the channel, you know, so they wanted to see his oxygen levels his oxygen levels were not great, but you know manageable. And I think, I don’t know how long but it was a couple of, you know, it wasn’t love between waters breaking, him being born and coming out, blue, and I mean really, blue, and I was because of the epidural I think I was in this weird, you know, place I didn’t really know, but I just can see a baby who’s really he really was. He didn’t make any noise, and they take him…I’m laying in a bed like this.
P: Yeah, horizontal…
C: and they took him across the corridor, and I can see loads of medical staff with their, you know PPE, as we all call it now would have medical clothes, all around this table I can’t, you know he’s gone. He’s just in a swarm of bodies, the placenta came out, and the doctor showed me, and I hadn’t really….No idea what a placenta looks like, like, like a sheet of paper with a hole in it. And so this is not normal, you know something, there was something wrong with the placenta. Did you have a trauma. No, you know, like a car accident, as if you wouldn’t mention your doctor physical trauma, no nothing, they presume that I had been hit. And because of, you know, there had been some kind of in their head, there’d been some damage to the placenta because everything had been progressing. Okay,
P: Yeah.
C: So when my husband arrived at the hospital he wasn’t able to come in, immediately because they wanted to ask questions to him and to me to try and, you know, make sure I guess that everything was safe and secure. We managed to convince them it was my placenta got sent to Germany, because it was so unusual. What they had seen but the, the placenta had failed, basically, for whatever reason, it had failed and Byron my, my son had had oxygen depletion at some level. I don’t know how much I don’t know for how long. But he had, he was a similar size, to his sister, you know, more or less, again under the two kilos, very small baby, but he was in an incubator, because they were worried about other you know complications with his lungs he hadn’t had steroids, which is something that they would have given you know if they’d known he was coming early to get his lungs up.
P: If you’d had time, Yeah,
C: with the eyes as well so he would have patches over his eyes. And again, he had no fat, like that. It’s weird to see but it’s what for me it wasn’t because of both babies looked the same, but it’s like a baby but shrunken because you’re used to seeing chubby arms or a big tummy. And it’s not like that they’ve got the skin. But you can you can almost see through it and you can’t see there’s no fat.
P: Yeah.
C: They look like so they’re their faces look very pulled. They look very pulled. Again we stayed in hospital, it’s obviously more complicated because we had my daughter at home, but I know that if we’d been in England, having Byron, he wouldn’t have survived. It was only…
P: Wow, why do you say that?
C: because you don’t have the same interventionist idea and follow on, and I know this because obviously I had a baby afterward in England that they would have been monitoring and checking, so much, and if he hadn’t come out that day. If I hadn’t have gone to the hospital. I’m 100% sure that we would have been looking at a very different result. For sure, I feel this really strongly that, you know, as much as I probably lean towards the natural birthing—even though my first two weren’t, I do thank God for the fact that the doctors were able to do this monitoring, you know, get him out. Give him everything he needed. Afterwards, monitoring me able to be looking at just, you know, all the different, you know, I had the blood flow or the oxygen flow into the placenta all of those things, and now he’s, again, he’s turning eight in a few weeks, very big, strong boy. He’s on the autistic spectrum. I don’t know whether that has maybe been linked to because of the birth I’m not sure. And I did have to take quite a lot of medication, with him, and you know, obviously, whatever had happened with the placenta.
P: I don’t think the medical community has nailed down definitive answer yet on what causes autism, but I asked Dr. Wilcox just from her experience about births like that of Charlotte son. I include this because I think as moms we feel responsible for everything our children encounter. Can you talk for a minute about autism, what are the current ideas about its origin and do you think oxygen deprivation, can lead to autism.
Dr. Wilcox: Yeah you know it’s not, not necessarily an area of my expertise, but that. I think the most current thoughts are it is a combination of genetic and environmental factors, certainly not typically oxygen deprivation oxygen deprivation during during labor, and during the delivery, certainly can cause brain injury. But that’s more of an acute presentation. That can lead to seizures that can lead to really significant physical and mental issues, but different from autism.
P: Okay. That’s useful.
C: he’s a very bright and quite energetic boy, but he does have some challenges now…so then when Byron was 10 months old we moved to England and I will still breastfeeding and around a month later I think, I found out I was pregnant again. And this one was a surprise where as the other two had you know pretty much been planned… this third one was a surprise and having morning sickness and breastfeeding is tough…is tough…so I would be breastfeeding, put the baby down, be sick, pick the baby up, breastfeed…
P: Wow, that sound like a lot
C: It was a lot but the English experience is completely different. You normally would not go with a doctor, you’d go with a midwife. They don’t just scan, they actually feel where the baby is, they’re measuring you, they ask you how you’re feeling, you know, just how you’re coping, they’re not like are you losing weight or are you gaining weight, but how you are actually feeling about this. In Spain, you go with a gynecologist obstetrician and and it’s very medical. Whereas in the UK, it’s obviously seen…it’s not medical because you’re not sick
P: right
C: so you don’t need to control it as much as you need to monitor and support it. In England you have only a scan at 12 weeks 26 + 38 that would be the norm. Everything had gone well, 38 weeks, about to take my daughter to school, had the baby in the pushchair, and my waters broke. I wasn’t really ready, which is ridiculous because you would’ve thought I would be, but I was not. Didn’t have a bag packed, so I call a friend. Nuno was in London, so I call him, I was like, you are in the country, we’re doing this…we can do this! Yeah. She took my daughter to the school. Fifteen minutes later I’m like wow, the contractions are heavy here and she’s like you need to go to the hospital now. And I was thinking, this is crazy, you know, it’s fifteen minutes….
P: yeah
C: And it’s only 20 minutes to the hospital. So I’m thinking, okay, it was an hour from where my husband was in the center of London to where we lived in Richmond and I had planned on staying home until he could…but no, I had to call a taxi, or she had called a taxi, and towel on the back, going through Richmond Park thinking oh my goodness I’m going to be having a baby in the middle of a park. Anyway, I get out of the taxi, waddle, waddle into the hospital reception..
P: yeah
C: and in a very English way, rather than screaming “I’m having a baby” I just went, “um, Excuse me?” like this…luckily the receptionist looked at me and obviously thought “woah, somethings going on there”. Nurse came over, went, Okay, immediately got a trolley, and I was on my knees, holding onto the trolley, scooted up an upstairs room. And it had been 35 minutes from waters breaking to now…
P: Wow
C: so she looked, and I was already fully dilated, or not fully but pretty much. A poor poor midwife, junior midwife came in and asked if I wanted a bath, she obviously hadn’t been told…I will always regret being so mean to her….and saying “no”, but not that nicely…I really wanted an epidural because the pain was horrendous, it was horrendous. I had a little bit of gas and air but I think I chewed the nozzle off. And I was on my all fours and yeah Elliot was born in less than an hour from what. Yeah. And it was horrendous. It was horrendous.
P: What Charlotte just described is known as precipitous labor, which is defined as a birth that takes place less than three hours after regular contractions have started as she knows a fast delivery while nice on paper is no picnic, a labor for someone who’s had kids before can last on average anywhere from three to 15 hours, and that time was well spent by your body, which uses it to slowly stretch a fast labor can lead to tears, it can be extremely painful as there’s very little break between contractions and hormones like oxytocin which decreases feelings of pain and promotes bonding are slowly released as the body progresses through various stages of labor. This release may not be well synced we’re rapidly we’re back to the interview.
C: And I had a stupid midwife, she said to me, I’d obviously told her this was my last baby and she goes, as this is your last. Aren’t you glad you did it all by yourself, as opposed to having, you know, an epidural. I you know I can still hear the exact words of it, thinking, hell no. I did all of them by myself.
P: Yeah, yeah, yeah.
C: Are you kidding me you know him but three times, all by myself. I really struggled really really struggled with this third pregnancy my mother arrived, Nuno arrived after an hour, but they were shocked because the baby was already my arms. I didn’t want to Hold baby. I didn’t want to try breastfeeding. I didn’t want to accept that I’d given birth or something anyway I really, really struggled to be bonding with this baby with, you know, with my son, maybe, normally in England they get you out quite quickly. Like sometimes you can give birth in the morning and they get you out by the evening.
P: Wow,
C: Well, it was yeah I mean really, I was in the hospital for a few days because they could see that I was not. I was going through the motions of it because especially as a third time mother, yeah they’re thinking how you know she’s gonna know exactly what to do. No problem. We know she’ll be fine. But I don’t know what I did what I read afterwards, these very fast labor’s, you don’t go through all of the different processes you don’t get the same hormonal release a different hormone release that tells you you know all the different things that you need to bond to you know all of those parts, it needs to be a slow release them to the baby home. Boy, it was a big baby quite, quite a big baby for me. And he had tongue tie quite bad tongue tie which was, you know, quite challenging for him breastfeeding so it’s not painful for me.
P: Yeah,
C: you have somebody come to the house to deal with Tongue Tie because they do it after I think two weeks old or something. And it was just amazing midwife. She obviously knew that something was up, I was having a hard time of it, because she stayed a long time and she talked to me a lot. She. She really understood that thing of women needing women. When you have a baby. Yeah, this my sister, she couldn’t come. For for that for Elliot’s birth or for afterwards, for a few days I mean not long time but I really missed, having her. She. Were you know and so, yeah, I missed that female thing, having that midwife come and just really be able to sit down and talk to me and just keep non judgement of the fact that you’re struggling to bond with your baby which everyone thinks is immediately normal.
P: Well, it’s also driven a lot by chemistry right as you described. And if you don’t, if your chemistry is not driving that it’s not really a choice, right, you know,
C: so but having somebody who sort of understood it, and then the thing about you know the UK, is that once you’ve had the baby. That’s it. You know, there’s a check at six weeks where, you know, they simply ask like are you, you know, are you suicidal. And if you’re not suicidal, then they’ll take drugs, and you’re done. And then after that the only person they care about is baby for vaccinations. Yeah, so there’s no follow up. And with the other two, a hadn’t needed it so much, but strangely with the third one that probably on paper look like an easier. Yeah, is hard time
P: that sounds really challenging, but now you’re now you’re just busy with three busy kids and
C: yeah I mean we deal with Byron’s autism. And, which is challenging but luckily my husband and I are on pretty much on the same page on most things. It’s all good lucky, after you know some challenges ahead. I think I think it’s all been pretty much I look back on it. It’s funny, I, I can see it’s more traumatic than when I was actually going through it. Yeah. But yeah, there we’ll get lucky there okay.
P: That’s awesome. That’s a great story so my last question for you is, if you could give advice to your younger self What would you tell her?
C: I think I would say, having another woman. Whether it’s a doula or a sister, a mother or a group of females. Yeah, really helps. And even if you’re like me and you’re quite independent, it really does support you in a way that even your closest husband partner, you know, can’t. And I think the other thing I would say is that to remember that when people are giving you advice, they are trying to help. They’re not judging you, but it does feel like it. And, you know, whether that’s why you’ve had a miscarriage, whether it’s breastfeeding, whether it’s. So, let the sort of society around help you. And you don’t have to listen to them all and you can do you know you can say, Yes, thank you. But you don’t have to be this sort of strong, I can do everything. mother is
P: Yeah.
C: And it is such a challenge and I think I’d like to ask for help, maybe a little bit more, tell people that you struggled with it, tell people that you are struggling with it. And whether that’s your husband, whether it’s you know whoever. Just ask for help. I think that’s probably what I would do if I did it differently. I, you know, I wouldn’t keep telling on, I was okay. I’m okay. I’m okay, because yeah it’s worked out in the end but it probably was a bit more difficult, because of doing it that way.
P: Yeah, that sounds like good advice. Charlotte, thanks so much for coming on here and sharing your story I think a lot of people will find it valuable. Thanks so much.
C: Again, you’re welcome.
P: Thanks again to Dr. Wilcox for sharing her medical expertise. Thank you for checking out this episode. An extended version of the show notes can be found on war stories.com. Those include links to medical issues we touched on this episode. If you enjoyed this story, please consider liking and subscribing to the podcast. I’ll be back soon with another inspiring story.
