It’s one thing to talk to your physicians about becoming pregnant when you live with ulcerative colitis or Crohn’s disease. But what about getting the benefit of experiences from the mothers who have been through a pregnancy, birth, and breastfeeding journey? Former news anchor and current blogger and Crohn’s patient Natalie Hayden gives her experiences with pregnancy and receiving biologics, as well as how she has participated in research during her pregnancies and the benefits it offers her family.
Concepts discussed in this episode:
- What is Symphysis Pubis Dysfunction?
- An Overview of Sacroiliac Joint Pain
- IBD Parenthood Project
- Mother to Baby Studies – Crohn’s Disease
- Mother to Baby Studies – Ulcerative Colitis
- Maternal-Fetal Medicine Specialist
- What Is Colostrum?
- Motherhood Unplugged on Lights, Camera, Crohn’s
- The PIANO Registry
[Music: IBD Dance Party]
Amber Tresca 0:04 I’m Amber Tresca. And this is About IBD. It’s my mission to educate people living with Crohn’s disease or ulcerative colitis about their disease and to bring awareness to the patient journey.
Welcome to Episode 93.
My guest is former news anchor and current blogger and Crohn’s patient Natalie Hayden. Natalie is pregnant with her third baby. On her blog, Lights, Camera, Crohn’s, she offers a look into her pregnancies and the choices she has made about family planning, IBD medications, and COVID-19 vaccination. She tells me about how she has participated in research during her pregnancies and the benefits it offers her family.
We also talk about the unique problems that face moms who live with an IBD. We tend to scrutinize our kids’ bathroom habits, worry about having enough energy to care for them, and wonder how being hospitalized or having surgery will affect them. Natalie gives tips on how to cope with these issues as well as a glimpse of how she’s recognizing the diversity of motherhood in the IBD community in her blog series, Motherhood Unplugged.
In her second appearance on About IBD, let’s welcome my friend and fellow IBDMom, Natalie Hayden.
Natalie Hayden 1:21
I’m thrilled to be on Amber. Thanks so much for having me.
Amber Tresca 1:24
You were last on episode 26 if you couldn’t believe that, and we talked a lot about your diagnosis journey on that episode. But I wonder if you would just briefly give a recap before we get into what I really want to talk about which is your pregnancies. Absolutely.
Natalie Hayden 1:41
So I was diagnosed with Crohn’s disease in July 2005. Two months after college graduation, I had a picture a health perfect life prior to being diagnosed with Crohn’s never had illness. I never even had an earache. I was an avid soccer player played year round up till college, basketball track, you name it, I never really thought about getting sick or having my health rub for me. So when I started that feeling well, shortly after college graduation, I was having fevers up to 105, extreme fatigue, abdominal pain anytime I ate any food. It was just it hit me like a ton of bricks. And I knew something was wrong, but I couldn’t put my finger on it. I was one of the few people who was diagnosed in the emergency room after a CT scan of my abdomen and a rectal exam. Never forget, the doctor walked in and said it looks like you have Crohn’s disease, you are going to be admitted. You are malnourished, you are dehydrated, we’re doing a colonoscopy in the morning. And then everything just kind of went black in that moment. And from that point forward, I’ve had Crohn’s disease.
Amber Tresca 2:46
You knew a little bit about Crohn’s disease before you were diagnosed. Is that right?
Natalie Hayden 2:50
That is right. So I grew up in the Chicago suburbs. And I knew some families who had siblings that had Crohn’s, and they had it very severely. I’m talking missing half of a high school school year. So I knew almost too much going into it.
Amber Tresca 3:06
Yeah, and especially when we had fewer drugs to treat the disease. You know, things were very bad in those days. So when you were diagnosed was that the first thing that occurred to you? Was it the people that you knew that were so sick?
Natalie Hayden 3:20
It sure what was I instantly thought about the family, friends who I saw suffering, who I saw missing sports, who I saw, you know, wasting away these guys in high school, who were athletes who were on the sidelines and had lost a bunch of weight and looked a lot weaker. And I immediately thought, you know, my life is really going to shift with this illness.
Amber Tresca 3:41
Yeah, I think it’s probably safe to say that things turned out a little bit differently than you expected. Both in terms of the disease and then in terms of how your life has gone since. What I really want to talk to you about today is your current pregnancy which you are pregnant with number three, it’s always interesting to me to think about different pregnancies because between my first and my second I thought gosh, I’m you know, it’s the same father, I’m the same mother and but why are these pregnancies so different from one another? It’s really so bonkers. And then adding IBD into things also for me it was different. My IBD was different with each pregnancy. Do you want to talk a little bit about how your pregnancies have been different and then how maybe your IBD has affected or not affected each one of them?
Natalie Hayden 4:33
Absolutely. It is so interesting how you expect almost all your pregnancies to be the same and they can be night and day difference. And I think age also plays a big role. With my first pregnancy. My son just turned four, and I was 33 years old 32 when I got pregnant with him, but 33 when I delivered. I had a little bit of nausea, but I never threw up. I didn’t have any orthopedic pain. I don’t remember having any back pain I’ve had maybe that round ligament pain. Very typical things you know, I’ve loved rocky road ice cream I want to bed every night. I love to pickles, just all kinds of the stereotypical pregnancy things.
Natalie Hayden 5:09
Well then enters in my daughter. And I don’t know that I’ve ever been sicker outside of IBD. She had me vomiting up to five times a day for 15 weeks while I had a toddler who would love to just pull my hair over the toilet while I was on my knees struggling. And then with her, I had what’s called SI joint dysfunction very early on in pregnancy, so it almost feels as though your bones and your butt area. It’s like constant sciatica. So every step hurts a lot. What I almost attribute to is when you’re on a high dose of prednisone, and I know what I’m on 60 milligrams of prednisone, my bones feel like they’re going to break it has that fragile feeling. It’s like that constantly in your hips. Because what the body is doing as the relaxing is loosening up that hip area, that pelvis too fast, and you don’t have the stability. So I dealt with that. And I did physical therapy, probably 15 weeks till the end of the pregnancy.
Natalie Hayden 6:13
And they warned me in that pregnancy and said, Now Natalie, if you have a third, this is probably going to be even worse. And I was almost on bedrest with the last pregnancy with a walker as a 35 year old. So I was a little nervous about that. But I really aspired to be a mom of three children. And I did have a miscarriage in between my first two. So we decided to try for baby number four in quotes. And we got pregnant right away, actually, unexpectedly. And this pregnancy has been honestly a walk in the park until recently, I was never sick, I was maybe nauseous a couple days never vomited. So I instantly thought this has to be a boy. And he was being pretty easy on me. And I thought, well, this, this little guy is going to be pretty chill for the little Caboose of the family.
Natalie Hayden 7:00
But then I started getting what is called synthesis pubis dysfunction, which you almost have to Google it, I still cannot spell it, I have to look it up every time I try to write it out to somebody, even in a text message shortly. It’s called SPD. And then I also have SI joint dysfunction. So I’m in physical therapy again, with the SPD. Anytime I put my foot down, it can just strike and I get a lightning rod of pain in my groin area that debilitates me to the point where the only way I can walk is if my knees are together. And my whole family laughs at me. It’s a it’s pretty crazy. But this is the way I look at it when you have IBD. And you know that there’s no end in sight, it can be very overwhelming and daunting. But when you’re pregnant, no matter what that symptom is, you get through it, because you see that you are going to get the greatest gift of all after nine months, and then those symptoms are gone.
Natalie Hayden 7:57
So they’re short lived. And that perspective is huge when you’re an IBD mom. So even though I’m struggling right now, I know that you know, by July, this little boy is going to be in my arms. And those orthopedic problems are going to go away. And I was just saying to my physical therapist yesterday, I’ll take this over a chrome flare while pregnant any day.
Amber Tresca 8:15
Yeah, it’s so funny that you said about your ages when you were pregnant. Because I had the same thing. I was I want to say I was 34 and 37 when I delivered. And my obstetrician was so infuriating, because when I had problems, and I would go to her and I would say, I didn’t have this with the first pregnancy. And she would say things like, Well, you’ve also never been this age before. Like truth, but at the same time, hard to hear.
[MUSIC: About IBD Transition]
Amber Tresca 8:52
You have been very open and transparent about how you’ve approached a lot of things during all of your pregnancies, and especially during this one. Can you talk to me about how you thought about receiving biologics during your pregnancies? I know that you are on Humira right now and you you’re a long term Humira patient, and in terms of when you were pregnant with your first versus pregnant now, I think even in that short amount of time, we’ve learned a lot more about biologics and pregnancy and IBD. would you compare and contrast that for me and how you’ve thought about that so far?
Natalie Hayden 9:32
Sure. So being on a biologic. I started in 2008. And I was young, you know, I was 25 years old. And when I think about it back then I knew I hope to be a mom one day, but I never really thought in that moment. You know, I was a single news anchor at the time. I wasn’t really thinking about a family. I knew I wanted to be a mom someday, but I didn’t think you know, how is this drug going to impact my fertility or my future being pregnant? Well, I give this to myself while I’m pregnant, though. Thoughts never crossed my mind. Well, when I had bowel resection surgery in August 2015, when I was engaged planning my wedding, I thought to myself, what is this going to mean? Because I knew that I was going to want a family shortly after marriage because I was 32 at the time.
Natalie Hayden 10:17
And I thought, you know, if this surgery works well for me, and I’m finally in surgical remission, we have to capitalize on that remission, so we cannot wait a long time. So I went to my gi doctor and my post op appointment in November 2015. And I had all plans, I thought, you know, I’m going off all medication. This is the first time I’ve ever said this in my 10 year journey with krones. I had all these hopes and dreams, I’m not going to back on humera. I feel great. No medicine, I’m going to do a natural birth. I’m not going to be on any medicine, I’m going to breastfeed. And then she sat me down. And this is my current gi. So we’ve been together now, almost five years over five years. And she said, Natalie, I can laugh about it now. But it was absolutely devastating in the moment.
Natalie Hayden 11:03
She said you have severe Crohn’s disease, you’re going to do another loading dose of Humira on this is back when it was very, very painful. So another four shots. And she said, You’re going back on all the meds and you’re going to start more supplements. But she was very proactive. So she said, we’re going to put you on a prescription prenatal This is seven months before my wedding, we’re going to put you on folic acid, we’re going to put you on calcium, but you’re also going back on your Humira.
Natalie Hayden 11:28
And I sobbed in that appointment. I had to miss work that day. So did my husband. We went out for sushi. I remember and just talked everything over. And I knew that I needed to follow her recommendations because she said, sure if you want to stay off the medicine, your surgery resection, it’s great now, but in three to five years, I’m going to see you back in your car. And I’m going to I’m going to hear that you are flaring constantly and all these things. And that worried me because I didn’t want to be a newlywed and I didn’t want to be a new mom having all these problems. So I unselfishly decided that I needed to stay on my biologic. And I didn’t have any antibodies. So I also did not want to ruin that because I was more nervous about having to restart a different type of biologic. So I went back on Humira.
Natalie Hayden 12:13
And you know, I was very apprehensive just like anybody out there. It is difficult when you are pregnant, you have a life growing inside of you. And you have to either get an infusion or an injection. And sure there’s all these safety studies. And people tell you what, say your doctors or you might see little kids that their mom was on Remicade, or their mom was on Humira. But you still think this is different. This is my body, my baby, and I don’t want to do anything to harm them, and am I hurting them by taking care of myself. So you kind of grieve, you feel guilty at times.
Natalie Hayden 12:45
But at the same time, now that I my third pregnancy in, I don’t even blink when I do it or think twice or feel guilty because I look at my little Sophia and my Reid, who are dancing in front of me eating their dinner while I’m doing my injection that’s now pain free. And I see how perfectly healthy they are. And that I have stayed out of the hospital their entire life and been in remission since that surgery, because I have been a compliant patient who stayed on my medication. And they are they’ve actually been tracking different mother to baby studies. I’m part of the piano study nap right now with this pregnancy. So I love contributing to research and empowering women to see the safety and just the peace of mind that these biologics can bring to protect the mother so they can bring a healthy baby into this world.
Amber Tresca 13:32
So your gastroenterologist was a big source of information for you and also very sounds like very trusted, which is fantastic. Did you at any point look for other resources or look for other opinions? I’m sure lots of people gave you their opinions whether you wanted it or not. But were there any trusted resources that you went and looked for either before your first pregnancy or even now is theirs? Is there someone or something that you look to?
Natalie Hayden 14:00
I’d say one of the most challenging aspects of pregnancy, whether you have a chronic illness or not, is all of the people around you, friends and family who may not know much about inflammatory bowel disease in pregnancy, but look at you and say you really inject Humira I’ve seen those commercials and listen to the side effects while you’re pregnant. And that can be really hurtful because you know, all the side effects, you know what could go wrong, and you don’t need somebody who’s not educated and well versed and IBD to try and tell you that you’re managing your disease incorrectly while you’re pregnant.
Natalie Hayden 14:31
So just try to drown out that noise because that’s what it is. It’s noise. But with Reid’s pregnancy, my first pregnancy, I didn’t know a whole lot. I had just entered the advocacy space that year. I didn’t really know where to turn to. And at that point, I was nervous about breastfeeding because in my mind, I thought well, this I know what goes through the milk. There’s a molecule. I don’t know, I don’t know if I want him to be exposed to anything once he’s out of me. So I gave him collapse from the first three days and then he Put the formula. Well, then my daughter Sophia was born two years later. And in those two years, I learned so much in the advocacy space.
Natalie Hayden 15:08
I checked out the IBD Parenthood Project, which actually launched the week she was born. So I had a chance to be a part of that with the American gastroenterological Association. And I saw the studies that show the positive impact of IBD and breastfeeding. So I gave it my all and we lasted six months on our journey. The only reason I stopped was because once I got my first period, I lost all my milk supply, unfortunately. But I’m also planning to do the same with my son this time around, I’m hoping to breastfeed because of the COVID-19 vaccine. And I not only want to give him antibodies and protect him, once I received that vaccine, but I also want him to get any type of immune boosting, he can get to try and prevent IBD.
Amber Tresca 15:50
You mentioned that you’re part of several different studies, that are IBD and pregnancy or birth specific, what are some of those studies? Can you take me through maybe how you’re participating in them? People think of studies as always being an intervention. But the pregnancy studies are a little bit different. So what does that experience been like for you?
Natalie Hayden 16:16
The experience of being a part of research, while pregnant and beyond has been really comforting and beneficial to me along the way. And I’ve learned a lot. So with Reid and Sofia’s pregnancies, I participated in Mother to Baby studies out of University of California, San Diego, and they’re non invasive tests. What you do is while you’re pregnant, they call you up each some each trimester, I almost said semester I’m thinking school here. And they call you up and ask you questions, how you’re feeling, what you’re doing, how your appointments are going, you sign off so that records from your maternal fetal medicine doctor and your ob and your GI your whole care team watching over you while you’re pregnant. Those are all sent to the to the study as well to give them more background information on your weight gain and how things are going with the ultrasounds.
Natalie Hayden 17:07
And the whole way they’re tracking you, you know, over the phone with a quick survey, I’ve done it as a mom, I’ve done it as a as a newlywed, you know. So it’s very easy to do, it doesn’t take a lot of time and they go around your schedule. I’ve do it around dinnertime, usually, right after we eat and they’re on the west coast, I’m in the Central Time Zone so it works out well. And then they send you packs of information that are very similar to the surveys and informational sheets you fill out at a pediatricians office. So making sure the milestones are getting reached things that you really might not think about if you weren’t part of these studies.
Natalie Hayden 17:41
And then what was so great is literally the week before the pandemic hit last year, they sent a pediatrician who’s part of the study to my house, no charge to me. And he studied my children right in front of me did everything I was comfortable with Reed and Sophia were looked at head to toe, I’m talking like looking in their hair to see if there’s a birthmark all the way to their toes. And he’s writing down different notes. And it was amazing to see that everything about them was formed and did everything that was supposed to, despite being exposed to Humira until 39 weeks and 37 weeks gestation.
Natalie Hayden 18:20
So just being a part of that made me feel so good and knowing that they’re getting track not just in utero, but also until age five, but I am part of the PIANO study. And that is something I’m really excited to be a part of it has been around since 2007. It has tracked more than 1500 women and its focus as exposure of biologics. And now they’re also looking at the COVID-19 vaccine and how that transfers and pregnancy and also through breastfeeding. And that is very similar. I answer surveys, we do interviews, they’ll take some cord blood there, they are going to draw my blood and the baby’s blood when he’s born.
Natalie Hayden 19:00
But just so you know, when you assign for something at the beginning of a study, and maybe they say you know when your child six months, we’re going to draw his blood. If it’s not necessary, maybe I won’t do it. And they said, that’s completely fine. You get to do whatever you feel comfortable with. So I know that my children always with their pediatrician get a one year blood draw. So you know, we’ll do it then for sure. They’ll be getting my breast milk samples so that they can see you know, what is the antibody level of the COVID-19 vaccine in her breast milk that’s transferring to the baby. And it’s just amazing to be able to be a part of this research and then see it all get announced and shared and articles and studies in the gastro journal and say I’m one of those women. I’m one of the people that is helping a prospective IBD mom, a current IBD mom, a caregiver maybe somebody’s mom who has a pediatric patient who’s thinking, will my daughter ever carry a baby and see these promising results?
Amber Tresca 19:55
I think the PIANO registry has been the most revolutionary thing that It has come along for women’s health and IBD. And it is so comforting. There are new studies coming out that I can’t even keep up with all of the research and all of the papers that they’re publishing, based on the data that they have from the women who’ve participated in the piano registry. Thank you for participating in all of that, because it’s really fantastic. It is hard to see your kids like get a blood draw, but at the same time, the kids get through it, you get through it. And it’s all for the best. And to be able to contribute to research in this way, is really fantastic.
Natalie Hayden 20:36
And what’s so great about the piano registry is it is going to track my son until he’s 18 years old. And I almost joked with him, I said, what if what he’s 14, he gets a little tired of this or doesn’t want to participate, you know, I could just imagine the pushback. They said that is not a problem. But if it is possible, that’s an amazing way to get a long term look at the exposure of biologics. So it is really incredible to be able to have this resource be a part of this resource, and just know that it’s making a difference in the lives of others.
[MUSIC: About IBD Transition Emotional Piano]
Amber Tresca 21:20
Part of being an IBD mom that often enters into the public discourse, as well as what we consider with our parenting partners. And that’s the idea of passing IBD along to our children. We do know that there is a genetic component, there’s an environmental component as well. But we do know that IBD is in our genes, although not everyone with the genes for IBD has those genes turned on in a way that they go on to develop one of the diseases. We have to consider this. And what are your thoughts around it? And how are you coping with that idea?
Natalie Hayden 21:57
That’s a great question. I think that no matter how reassuring studies may show or how low that percentage is for passing it along to our children, that’s always in the back of our mind. You know, when my children say I have a tummy ache I’ll read was potty training last year, there were multiple nights in a row, he would sit at the kitchen table, not touch his dinner, and say, Mommy, my tummy hurts. And when you hear that, as an IBD Mom, it’s like an alarm is going off in your head and you don’t think oh, you might have to go poopoo you think oh my god, he has Crohn’s disease.
Natalie Hayden 22:27
And it, and my husband thinks I’m crazy. Because I jumped to that immediately my eyes go big. And I get kind of teary eyed and go, Oh, my gosh, do you think and Bobby’s like Natalie, come on, he does not have that. Stop thinking that. Let’s not jump to the 10th degree here. Let’s focus on the now and you do have to be brought back. And that’s happened to me multiple times in the past four years of being a mom. And I’m sure it’ll keep happening, you know, more so as they get older. But with little ones, it can be hard because they can’t really articulate what’s going on. If my daughter, you know, has a lot of loose stool in her diaper one day, I might think she going more than normal.
Natalie Hayden 23:02
So you just always are on kind of heightened alert, I’ll say a little more piqued interest. At the same time I try to comfort myself and thinking I’m the first person in my family that has Crohn’s there is no distant relative that I even know of who had any type of inflammatory bowel disease or type of issue like that. And I try to tell myself that if God forbid, my children have IBD, who better to advocate for them in their corner than a parent who understands and gets their reality. I think it’s so hard for parents who their child’s diagnosed with ulcerative colitis. And this is the first ever hearing of it, they have no idea what it feels like they don’t know what it’s like to have a chronic illness. And that’s really hard to grapple with in its own way.
Natalie Hayden 23:42
It’s different, I’m sure when you have Crohn’s yourself, and you pass it on to your child. And you think they have this because of me and I’m sure it’s it takes a lot of coping and grieving and therapy to get through that. And that’s okay. But the people that I’ve talked to that are adults now, and their parents had IBD, or they got their IBD baby from their mom or dad, every experience has been very positive, it’s actually brought the parent and the child closer together. And they’re grateful to have them in their corner. And they don’t blame their parent or say you gave me this or, you know, judge them for what their life has turned into. I think that it turns into you know, it is a family disease anyways, whether nobody else has it or not. But it’s just in a different way.
Natalie Hayden 24:25
But you know how to navigate that and tackle those ups and downs and the roller coaster that is life with IBD better than anyone else if you’re a parent with it. So try to comfort yourself and knowing that if that happens to you, you will know how to handle it better than anybody for your child.
Amber Tresca 24:41
I think that’s right. And I think that’s a really healthy way to look at it. I will tell you Natalie because my kids are 10 and 13. Now the baby and then toddler poop situation. You will always find a way to look at their poop and think that there’s something wrong
Natalie Hayden 24:59
Amber Tresca 25:02
But I will say that as they get older that fear kind of goes away because the the baby diarrhea goes away and then the toddler diarrhea goes away, and then they just become normal humans who go, why are you asking me about my poop all of the time?
Amber Tresca 25:18
I had one that tended towards diarrhea and one that tended towards constipation. And it was a constant game of catch up, and then it all evens out when they went to school, right about that age. And now it’s like, every so often, I’m just like, Hey, what’s your poops look like this week, and I get an eye roll. And then they tell me and then I’m like, Yay. So Natalie, do you have any advice for other IBD moms who are thinking about pregnancy, maybe trying to conceive right now.
Natalie Hayden 25:49
My advice to anybody out there who aspires to be an IBD? Mom is to be proactive. Don’t think I want to conceive this month. So I’m going to conceive this month. This is a decision that has to be made months ahead of time. You want to have all your ducks in a row you want to have your care team and then No, I would give it at least six months, let your GI know you know, is my disease in a place right now that you believe that I could carry a child without flaring and pregnancy, I know you don’t have a crystal ball. But if you had to guess is now a good time or my my symptoms calm enough for me to carry a baby and be healthy throughout pregnancy.
Natalie Hayden 26:27
You want to tell your OB so that they are aware, I did this with my first two pregnancies and I think it gave me a world of peace of mind is I had a colonoscopy. weeks before we started trying to conceive. So we knew, you know, my colonoscopy is in January, we’re gonna start trying in February. And my gi knew that was the game plan. So every time she would walk in after my surgery when I had these colonoscopies, I’ve been in remission since then. So it’s always been good news, luckily. But she would walk in and say Natalie and Bobby, you have the green light, you can go for another baby.
Natalie Hayden 27:00
So because of COVID this time around, I decided to do a fecal calprotectin test instead of colonoscopy because my gi actually said it was in the thick of the pandemic, when I was due for my annual colonoscopy. She said, let’s just do this. You don’t have any active disease. Your labs are looking fantastic. But I knew we wanted to try in the fall. So it was a little bit. It was done a little bit more blindly than I’ve done in the past, but I have been feeling so well. I felt competent, and decision I think so even it being my final pregnancy, I was a little more confidence you in the whole process, and so was my gi doctor. So typically with my other pregnancy, she sees me every three months, this pregnancy because the other two have gone so well. She said let’s do every six months.
Natalie Hayden 27:44
So I saw in October this pregnant right before I got pregnant, and I’m seeing her later this month. And then I always say it’s important to have a maternal fetal medicine doctor, which is recommended by the AGA and IBD Parenthood Project. So what that is, is it’s a high risk doctor who focuses on chronic illness. So they see you more than a typical OB does and you get more routine ultrasounds. So instead of just having the eight week and the 20 week, and that’s the only time you see your baby, you see them multiple times throughout the pregnancy, they’re measuring to make sure that the baby is growing the right way that there’s not any concern for preterm labor.
Natalie Hayden 28:18
And I thought this was really interesting with this pregnancy, because I had my bowel resection incision and two c-sections already, there’s concern about the placenta attaching on to the scar tissue of the incision. So my last appointment my 20 week, the maternal fetal medicine doctor said we’re so thrilled to see where the placenta is located nowhere near that incision. So because they’re going to need to cut again on that same line, God help me. They, there is no cause for concern with the placenta.
Natalie Hayden 28:47
So these are types of things that the maternal fetal medicine doctor is looking at. And then they relay the information over to your OB. My MFM is in the same exact building, and then your GI. So it is a coordinated team effort. This isn’t something we’re not like the average population where you can just try for a baby whenever you want, whether you’re symptomatic or not. Because if you try to start your family when you’re symptomatic, you have a much greater likelihood of flaring in pregnancy.
Natalie Hayden 29:12
And I always tell women I know it’s so hard to be patient. And it took me more than a decade to reach remission. So trust me, I understand that you might think I’m never going to get out of this. I mean, these are my childbearing years. And it’s unfortunate when that falls in that moment, which it usually does, let’s be real. But if you kind of play Russian Roulette, you’re not only putting yourself at risk, but you’re putting this baby at risk. And it’s one thing to flare when you’re by yourself. It’s a whole nother thing to flare when you have to try and navigate. Are we doing surgery with this baby in there? Are we giving you IV you know, steroids and meds and all these different things while you’re pregnant. So try to be patient try to be calm and understand that pregnancy whether you have IBD or not, is not a given. So we all just think well, I’m supposed to be able to do this and that’s what’s so hard with the majority of people who suffer with infertility and my heart breaks for them. Because there are so many people in the IBD. community, some is because of their IBD. But mostly, it’s a completely different separate issue.
Natalie Hayden 30:10
So don’t think I have IBD, I’m not able to have kids, because that is not the case at all, many of us are able to have children safely. And you see it all the time on social media, you see all these little IBD families. So don’t think that just because you have Crohn’s or ulcerative colitis, you’re not cut out to be a mom, your body’s not possible of doing it is it’s just a matter of navigating that and finding which way you hope and plan to bring a baby into this world.
[MUSIC: About IBD Transition Emotional Piano]
Amber Tresca 30:47
They used to tell people that you have IBD, and therefore your fertility is compromised, or that you can’t or that you shouldn’t, you know, I’ve heard all of those things. That’s why I love the IBD parenthood project, and that we’re talking about this more so openly now. I’m so grateful that we’re getting there. And it’s thanks to women like you and Natalie who are participating in all of these studies as well, that has given us the data to be able to move forward and help other women on their motherhood journey. And speaking about that you have a series on your blog, that is going into different aspects of motherhood and living with IBD. And I think also maybe with living with other different chronic illnesses as well, you want to talk for a minute about this series that you have so far, and what you’ve covered in what you’re going to cover.
Natalie Hayden 31:31
Yes, so I’m very excited about the latest series that I started about two months ago on my blog Lights, Camera, Crohn’s. So when I became pregnant, I thought, you know, I am not the best example of what does pregnancy look like fertility. I’m almost like that gold star where everything just happened. You know, I got pregnant. The first month I tried with all my children. I’m very blessed in that regard. I’ve been in remission, right when I got married. And my medication, I’ve only been on one biologics since 2008. And you know, I’m kind of like the poster child for this is the best it could be.
Natalie Hayden 32:05
And I realized that I don’t want to be that person. I don’t want to be that advocate. And I don’t want to be on my soapbox telling everybody that this is what you can have too, because everybody’s situation is so different. And when I became pregnant with my son this time around, I had a lot of friends going through IVF a lot of friends struggling with miscarriages. And I thought to myself, I want to be extremely cognizant and insensitive to the community and to my friends and family about pregnancy. And really just kind of put it all out there for people.
Natalie Hayden 32:38
So I came up with the IBD Motherhood Unplugged project. And what it is, is I’m featuring different guest posts, where people submit their stories to me and then we work on an article together. And it’s not just the cookie cutter I got pregnant, I’m having a baby and I have Crohn’s disease. It’s you know, the stories of surrogate surrogacy of adoption of you know, I had my first child through IVF. But then my body couldn’t do it anymore, because I flared and got an asked me so now I’m going through surrogacy, it’s people that are going through a natural path to get pregnant rather than IVF approach. It’s women who are trying to get pregnant, the pandemic and nervous how to navigate the vaccine. And if it’s, if it’s the right time.
Natalie Hayden 33:21
I’m doing all these different approaches and story angles, because I want to show that there’s not just one way to be an IBD mom or an IBD dad, there’s many different avenues and ways that it this journey takes us. So I want to kind of level the expectations. But I also want to show that at the end of the day, many of these people find a way to become a mom, if that’s really in their heart of hearts, what they want to do.
Natalie Hayden 33:43
And then I also share my own story, because of course, I like to offer that voice and that perspective, because there are many of us that have fantastic pregnancies get pregnant easily, or on our medication. And I like to be a voice for that community as well. So I’m just trying to kind of level the playing field a little bit. And let people that you know maybe are told they can’t ever carry a baby or really struggle with childlessness, a voice and a platform to show that they are not alone and that we see them in the IBD mom community, and that were all a part of a different, you know, aspect of it.
Natalie Hayden 34:15
But the IBD mom group is not just typical people like you, me and Brooke, right Amber, it’s, it’s people that have gone through different challenges and different things. And we all have unique challenges. And I think that it’s important to show and oftentimes in motherhood, it’s just painted as this beautiful fairy tale. But then you all live the reality of it, we all do. And then we think we’re less than or we’re not a good mom, because we’re really having some difficult days here. So it’s just about kind of ripping off that band aid and showing this is what’s going on behind closed doors when you have chronic illness and IBD from the family planning stage until that baby’s a teenager. And I love the different stories that we see, you know, from single parents, from people with teenagers from people who have Crohn’s and their baby has Crohn’s. I mean there’s just so many different stories that need to be told. So just giving those people a bit of a microphone and a bit of a platform really amplifies their voice and shows people the different ways that babies and families grow in our community.
Amber Tresca 35:14
I think it’s been really wonderful. I’ve loved reading all the stories that have come out of this. You know, we talked in the beginning about how you had a plan and how you thought things were going to go and how you wanted to be pregnant with IBD. And your plan got sort of turned around by reality and by your gastroenterologist. And I think there is probably nothing like parenthood to show you that you can have all of the plans that you want, it is not going to go to. And that has been true for me. It’s been true from from day one. And obviously, it’s been the same for you as well. So thanks for bringing all these voices out and hearing these different stories because it’s it’s really been incredible to see.
Amber Tresca 35:57
So I have one last question for you, Natalie. I think a lot about food. I think everybody who has IBD does. And so I was wondering, is there anything that you encourage Reed and Sophia to eat? That you don’t like yourself? Ooh, that is a good question.
Natalie Hayden 36:19
I love fruits and vegetables. So one thing I don’t like is I don’t like peas and cauliflower. Um, but I’m not a fan of those. And I’m not a fan of cauliflower. And I do make them that. But other than that, I like all vegetables and fruits. So I don’t, I don’t really have like a great answer for that. But peas and cauliflower. Those two are given those and mommy just gets a real small portion on the corner of her plate.
Amber Tresca 36:51
I think that’s right, that sounds about right. Yeah, I’m not really a fruit eater, believe it or not, like I don’t really like fruit. But I give my kids fruit all the time. And, you know, they actually do really enjoy it. I’m more of a vegetable person. So I will eat the peas and the cauliflower. And I actually do love broccoli. You know, and I make them eat it too.
Natalie Hayden 37:11 Yeah.
Amber Tresca 37:13
Natalie, take me through your social media and your blog so everyone can follow along with your IBD Motherhood Unplugged series.
Natalie Hayden 37:20
Of course my blog is Lights Camera krones.com. My Instagram is at Natalie, N-A-T-A-L-I-E A-N-N, Hayden H-A-Y-D-E-N. My Facebook public page is Natalie-A- and it’s my maiden name Sparacio, S-P-A-R-A-C-I-O. S as in Sam, P as in Peter, A-R-A, C as in cat, I-O, and my Twitter is the same. It’s at Natalie Sparacio.
Natalie Hayden 37:51
And I’m always readily available. I love when people reach out and they say I want to share my story. I think that that’s so empowering for people. And unless you approach an advocate and tell them you have a story you’d like to share, we aren’t able to find it always. So it takes a little bit of guts maybe to send a DM or send an email, but do not hesitate. Because that actually makes my day when I get messages from people that are saying I really want to share my struggles with becoming a mom, or how I became a mom or you know, I want to comfort somebody who was in my shoes I now I’m a mom of four.
Natalie Hayden 38:26
And you know, they inspire me. So it’s it’s amazing the camaraderie that is built. Because I know as myself, you know, my oldest is four, and I’m bringing a baby into the world until I when I see somebody like amber with a 10 or 13 year old, or I see a mom who’s in her 50s. And our kids are adults now. And I see their stories that inspires me because it gives me a look into my future and what could be possible.
Amber Tresca 38:49
Natalie, thank you so much for bringing that up. I don’t think that I say that enough, in that when people feel that they want to get their story out, especially when they’re dealing with something that maybe is not often discussed in the larger community that they can contact you they can contact me. And it happens sometimes, too, that perhaps a story is something that I can’t cover in the moment. And I might reach out to you and say, Would you like to talk to this person. So we do that as well to make sure that people have a platform and people have a voice and that we can help get these stories out there. In effect sort of contacting one of us is sometimes contacting a whole community of people that can help you get your story out and get things discussed and get them in the public discourse.
Amber Tresca 39:36
Natalie, thank you so much for coming back and talking with me about motherhood and for all of the work that you do in the community. I really do appreciate it and I’m always so glad to read your updates every Monday. They’re always fantastic. So thank you so much for Lights Camera, Crohn’s.
Natalie Hayden 39:53
Thank you so much for About IBD.
Amber Tresca 40:00
Hey super listener! Thanks to Natalie Hayden for all her transparency about her pregnancy journey. You can follow her on Instagram as @natalieannhayden, on Facebook as @natalieasparacio, and on Twitter as @natalieasparacio. Her blog is at lightscameracrohns.com. I will put links to all her social media and to more information about the topics we discussed in the show notes.
Amber Tresca 40:27
It’s one thing to hear from our physicians and other members of a care team about how to manage pregnancy and IBD. But it’s also so important to talk to the people who have first-hand experience with the unique issues IBDMoms face. That’s why Brooke Abbott and I founded IBDMoms. IBDMoms is a space for moms and moms-to-be who live with an IBD and moms of kids with IBD to find help and support. Our closed group on Facebook is a great space to ask questions and get answers from other moms whose lives are touched by IBD. You can connect with us across all social media as @IBDMoms.
I will put all of these links in the show notes and on my Episode 93 page on AboutIBD.com.
Amber Tresca 41:12
Thanks for listening, and remember, until next time, I want you to know more about IBD.