Britt discusses her easy 2nd pregnancy after PSC diagnosis

Britt was diagnosed with Primary Sclerosing Cholangitis when her daughter was 2 years old. Years later she was surprised to find she was pregnant again with her son. She speaks to the emotional process of accepting her diagnosis as a mom, focusing on her health, and re-imagining what her family would look like. 

Transcript

Britt  0:00  I think I was just in that much more awe of the fact that a body can do things even even when it's been down in the trenches.

PSC Mami- Monika  0:17  Welcome to PSC mommy we share stories at the intersection of PSC and Parenthood, PSC or primary sclerosing cholangitis is an autoimmune disease, where the immune system wrongly gets the message to attack its own bile ducts. Over time, this leaves them scarred and blocked, and in turn shuts down the liver, which To my surprise is in charge of over 300 life giving functions in the human body. To be diagnosed with this rare, unpredictable and incurable disease can rewrite anyone's life journey, including their vision and experience of parenthood. All stories and information we share here on PSC Mami are personal experiences and opinions and should not be used as the basis to treat yourself or others. Today I'm talking with Britt, who I met at my first PSC partner seeking a cure conference in Denver. She was one of the women I met and looked to when I desperately sought answers to my questions. Does PSC prevent you from getting pregnant? If not, should I even consider having children? I truly appreciate her story, her optimism and the work she has done in the PSC community. She lives in Minnesota here in the United States with her husband and two children.

PSC Mami- Monika  1:32  Tell me a little bit about your PSC story because obviously influences your motherhood journey.

Britt  1:39  I feel like I was for the most part pretty healthy all through early childhood, teenage years college years, get to experience all the fun things that go along with that. And then when I was in my early 20s, I started to have some issues with digestion one time right before Christmas. and ended up getting endoscopic procedure and they said that there was some slush in my gallbladder. And so they cleared that out. And then it was fine. And then, probably four years later, Malin, my daughter was just about to turn two. And we were trying for another baby. And every month, I would start to feel a little bit nauseous and think, oh, maybe this means we're pregnant, I'd feel really tired. I started to get a little bit hopeful. Maybe these are signs of pregnancy, but no, they weren't. And those symptoms kept getting a little bit worse. And so I went into the doctor again and they did an ultrasound and checked out the gallbladder and said, well, maybe it looks like there might be something there. So let's, let's have you go see a surgeon because your liver numbers are up your gallbladder looks a little suspicious, likely we're gonna just need to take that out. It's not an organ you need anyway. So I was like, alright, so I went and saw the surgeon and they said, Yep, let's remove your gallbladder. Okay, we'll got that scheduled and then, and that was right before my daughter turned two. And then as the two weeks after the procedure, the removal of the gallbladder went on. They said, Oh, you should bounce right back. It's an outpatient procedure, no big deal. And I kept getting worse. So when I wasn't feeling better and the pain was getting worse, it was like you know what? This is getting to a point that we need to just go back into the ER, this is not okay and went into the ER and ended up getting admitted and getting all the lovely procedures done. The endoscope, and colonoscopy and bloodwork and CT scans and all those fun things and then was diagnosed with PSC, so ended up being in the hospital for about 10 days shortly after my daughter second birthday, and that was when I was diagnosed.

PSC Mami- Monika  3:52  What was that? Like? Do you remember what the emotions were like or what you thought at that diagnosis?

Britt  4:00  Yeah, you know, it was scary. Not ever having heard of PSC and having a little girl at home and it's making me emotional now remembering at all. But yeah, it was hard and and we immediately found PSC Partners. I think my GI at the time told us you know, do not look on the internet and if you do, here the websites you should go to and one of them was PSC Partners, I believe, or my husband stumbled on it, I don't remember which it was actually which was really helpful. And, and I think it was probably good advice that he said, Don't try and search this out on the internet because there are so many scary things, but I, I just remember feeling kind of like you'd been handed this horrible sentence of your life is gonna be shorter. And just knowing that with a two year old at home, that was really hard.

Britt  5:04  I remember one of my first questions was, can we still have kids? Because we had been in the process of trying for our second child and that was immediately my first question was, are we still gonna be able to have kids and, you know, the doctor right away was very optimistic and said there should be no reason that you can't there is no, no other comorbidity that would immediately surface that would say, you can't have more kids a little bit of reassurance within this cloud of confusion and grayness. But immediately, it was just really emotional.

PSC Mami- Monika  5:36  How was that to have both fear because you had a kid and still a desire to have more children.

Britt  5:45 Oh, man, um, you know, I think the thought about having kids just was sort of delayed like, okay, it's not a no, this isn't a you're not gonna be able to have kids anymore. But at the same time, it was the scary thought of, well, first and foremost, I have to get healthy, I have to try and make sure that I can get better. So that I think just took priority at that moment is okay, now Now I have to get healthy. Now we have to figure out what our next steps are and how to how to live life with this.

PSC Mami- Monika  6:21  How did that shift? How did you come to the point where you felt you were ready to have another child.

Britt  6:28  The first six months after diagnosis, I think I was still in a pretty big healing pattern. So after that first round of hospitalization, it took a good couple of months to get back to work and just build up strength because I had lost a lot of weight and was just getting back to where we'd been before as close to it as we could. And then as soon as I was getting healthier again, I got hit with C diff. So I ended up back in the hospital again with that for another 10 days. And so then that next couple months after that was being on prednisone and tapering off of that, and then trying to feel healthy again. So I think it was six months after diagnosis before started feeling really good again and the doctor said it was an okay time to start trying. I think at that point, we tried and I, I just felt like I really wanted to have another child and especially, I think a sibling for Malin. But then, after a year of trying, we still weren't getting pregnant. And so then I went and saw the doctor.

Britt  7:34  And they had the but the doctor I saw first put us on one medication to try and increase ovulation and that didn't work and then referred us on to another specialist who referred us on to another specialist and so finally saw a reproductive medicine endocrinologist. And we're told that and this was probably two years out from now diagnosis. And we're told that there was probably not a very good likelihood that we would have a second child that I had a low ovarian reserve. So not a lot of eggs around and I was 35, then, yep. 35 then, so then we started thinking, Okay, maybe one baby is right for our family. Not easily, obviously, it didn't just come along, like, okay, we're just gonna have one baby. I took a lot of discussions and it was hard, but then thought, okay, we'll just have one. And then shortly after really coming to grips with that, I think it was another two years after that, and having some good support group. So moms have one that I, that we I was feeling better about it. And we started to give away all the baby stuff. And then that month, I found out that I was pregnant somehow. So the little miracle baby that came our way.

PSC Mami- Monika  8:51  Can you talk a little bit about the conversations and so you and Tim had and how you work through the emotional piece of the journey that you two have been on

Britt  9:00  Right after diagnosis, I think our conversations were just Yes, of course, once you're healthy, we're going to try again because we know we want another baby and we want our family to be a little bit bigger. And so there wasn't really much of a question, I think, in terms of, are we going to try for another child? Probably because things had gone well with Malin and it didn't feel like there was a direct correlation between my pregnancy and getting sick or anything like that she was seemingly and still is seemingly perfectly healthy and happy and so there wasn't any concern about well, what's gonna happen with the pregnancy because I handled the first one well, and then just having that time in between where things weren't going well and I wasn't getting pregnant and and then going and seeing fertility specialists. You know, we We talked about like, would would it make sense to try to do all these things? And I think there were a couple of factors that made us pause to think about using extra measures for fertility. Although I, it was not an easy question to try and answer. I think at the beginning, I would have done anything to try and get pregnant again. But then thinking through how well Malin was doing and the money that it would take, because of the fact that they said we have to just go all the way in and do the highest level of fertility treatment, and our insurance wouldn't cover any of that. So we hadn't talked about the finance of it and that we didn't feel like it was good for our family to devote that much of our finances to trying for another baby when we had this perfectly happy and healthy child already, who we could really appreciate and enjoy and have our family of three and then the other side of it being that, even though they said that there wouldn't be any ill effects to the liver with the high doses of hormones that still was a nagging piece in both of our minds, I think in terms of, well, it just seems like a lot to put your body through to have all of those drugs coursing through your veins and through your blood and through your liver. So it didn't feel like the right fit for us just since I was doing well. It's kind of like don't rock the boat. Don't try and push your body too hard when we should appreciate what we have.

Britt  11:31  So that was one of the bigger conversations when it came to the fertility options and trying to push harder for a pregnancy. And then when we did get pregnant, actually, the reason that I took a pregnancy test was because I was supposed to have my colonoscopy that week, and I was sure that no way it was a pregnancy. It was probably that I was hitting early menopause because I had a low ovarian reserve. So No way was I pregnant, but I couldn't go into the colonoscopy not knowing because what if I was then that would not be good. So I took the pregnancy test and we were both in complete shock. Like No way. No, no, really? No, that can't be right. And so I think my first instinct was, okay, we've got a call, both doctors will call and leave a message for the GI. And he knew that we'd been trying and the patient care coordinator knew we'd been trying so I lost the message for them. They call back right away. And we're like, oh, this is great news. We're so excited for you. Yes, we're gonna put off the colonoscopy. You don't need that right now. Just take care of what's going on. And then went in and saw the doctor right away. And I remember when we went in for that first appointment. The nurse who took us back was like, hey, so pregnancy, Are you guys excited? And we both probably just had complete looks of shock like, well, maybe, but we're not really sure that this is real, because We were told it wasn't going to happen. So I'm sure we were both just looking completely shocked and not quite as enthusiastic as she had hoped for. So then had that meeting with the doctor where they confirmed it. And I think it probably still took us a while for it to really set in that we were going to have another baby. And from that point forward, it was just excitement and happiness. And I think probably a big part of that was that things had gone so well before and I was in a good healthy place. I think we both kind of took it as a sign as Wow, yes. Okay. My body is actually doing pretty well right now that we could get pregnant.

PSC Mami- Monika  13:40  Did you see a high risk OB? Or did you just see their your normal OB?

Britt  13:48  We did, we actually did go in to see a high risk OB right at the beginning. So my general practitioner, the clinic that I see also had midwives but she was like, you know, You've got enough things that we're gonna send you on to a high risk OB just to make sure. And so she clicked off all the boxes of things that were reasons that I should see a high risk ob. So I was I had the PSC and the Crohn's diagnosis, I was over 35 I had had gestational diabetes in my previous pregnancy. I feel like there were other ones too. But oh, the early delivery was Malin and then the C section. So the fact that there was a potential that I would want to do a VBAC, all of those things, she's like, we need to send you to a high risk and they may not feel like they need to continue seeing you but we need to at least have them check you out and make sure that they're comfortable moving forward. So our first visit was with a genetic counselor, and then the high risk OB and they both said that we were actually pretty boring that the only thing that was of concern to them was The PSC and the Chron's. But the fact that I wasn't taking any medication at the time, and I'm actually still not right now, but that that made those less of a concern. Since neither, neither of the diagnoses were causing any troubles right now, I wasn't having any flare ups. They said, Everything looks good. You don't mean to continue seeing us. But they did suggest continuing on with an OB versus midwives or a general practitioner. So they did want us to see it through ob to get through the pregnancy, probably mostly because of the early delivery and not so much because of the other diagnoses.

PSC Mami- Monika  15:39  How was your pregnancy with Patrick?

Britt  15:43  It was really easy.

Britt  15:46  You know, my doctor, my gastroenterologist and said, with pregnancy and PSC, it kind of generally ends up falling the rule of thirds, a third of the people do better, a third of the people stay the same, and a third of the people end up having some more difficulties or challenges, and I guess I fell into the nice bit of feeling better when I was pregnant. So all of my numbers were perfect. And I was feeling really good.

Britt  16:15 I had to deal with gestational diabetes. So I didn't get to eat as many fun things as I might have liked to. But But yeah, I was definitely, really doing well, while I was pregnant, had a little spike in my numbers right after so postpartum, they were a little bit elevated, but then started to turn down a little bit and my GI said, Oh, that's to be expected. So we're not that worried about it. So that was nice. But I think just the shift of coming in my body and then being out of my body probably was a little bit of a challenge for it to reset itself. But otherwise the pregnancy was pretty easy.

PSC Mami- Monika  16:55  And did you carry to full term?

Britt  16:57  I did but I was on progesterone injections, because Malin came early. So Malin was five weeks early. So right away, they already determined that I would be getting these progesterone shots throughout the pregnancy with Patrick.

PSC Mami- Monika  17:16  Has it been any different for you between the two pregnancies?

Britt  17:21  So with my first pregnancy, I didn't know about the diagnosis. And I think it was just kind of that of pregnancy. No matter who you are, and what you've been through, just amazing that that can happen and so thankful that can happen and then the second time around with all the struggles that we've been through in terms of my health with PSC, but then on top of that, also being told that we likely wouldn't be able to have another baby. Being pregnant with Patrick, I think just gave me that much more pause and awe, over in the fact that my body could do something right. I think with the diagnosis of PSC I started to really doubt my body and kind of be angry with my body like, Why? Why aren't you doing things right? Why are you doing all these things wrong? And then getting pregnant and having the pregnancy go so well really just gave me a better sense of strength in my body or trust in my body again, like, Okay, thank you. Just so thankful that it kind of figured it out that time and that we were able to have another pregnancy and have it be really healthy. And I don't know if this is just second time parenting or if it's parenting with the knowledge that I've got PSC as well, but I think it just helped helped me to just remember the perspective of it all like this too shall pass and it's not going to be like this forever. And these are moments to cherish like, I'm sitting in his room with him and he's napping for an hour in my lap as I listened to a podcast online and not getting as frustrated as I would have with Malin, like, you just need to sleep in your crib. I have a million things to do. And I was like, Oh, this is so sweet. I get to just hold you and cuddle you. So, I think that was a difference the second time around is that all those little moments are just that much sweeter.

PSC Mami- Monika  19:17  How old are your kids now?

Britt  19:18  Marlin just turned eight and Patrick is 15 months old.

PSC Mami- Monika  19:23  Have you talked to Malin yet about your diagnosis?

Britt  19:28  A little bit. I mean, she knows snippets of it. She was old enough to kind of grasp that mommy was in the hospital. She actually learned to use public restrooms because mommy was in the hospital. So when she would come to visit me she would use the potty at the hospital. I was like yay, used to potty that's not at home. So there's one upside she could use the potty wherever she was. And then as she got a little bit older, I mean she would come with me to blood draws so she kind of got that Mom had to go to more doctor's appointment than most people. And she asked to get her blood drawn. And she always wanted to come along and watch and she would want to make sure she was helping in some way and Mommy, don't be scared. Did it hurt? Did it hurt? So I think that stuff just helped make it lighter when you're going in for something kind of scary that it could bring someone along as a little bit of a distraction.

Britt  20:23  And then she's a little caregiver. And I think maybe that translated a little farther even just from seeing times when I was sick that she would write lots of little get well cards, just talks about being a doctor and little things like that, probably because she's had more exposure to doctors, we would bring home masks from the hospital or from the doctor's office and gloves from the doctor's office. So I think it's been in the background for her a lot. And every year when I get the colonoscopy I mean she'll ask questions, Mommy, why are you drinking there? Why can't you do this today? Why are you going to the bathroom so much. So I think, wow, I have to have a special test done so they can look at my intestines, all the stuff down by your stomach. And so she's very curious and she'll ask a lot of questions and I try to answer them honestly, but not give her too much information. So she, she knows snippets. She doesn't know what PSC means. And she knows that I have a liver that has a hard time and she knows that I have friends that have had to have new livers put it in their bodies. She knows information, but not I don't know exactly how much of it she completely understands, but I haven't tried to hide it from her.

PSC Mami- Monika  21:38  How did your PSC diagnosis shift or did it shift your vision of motherhood?

Britt  21:45  I think it did a little bit. I mean, I had gestational diabetes with both of them. And the first time with Marlin It was like oh man, why what? This is terrible. How am I gonna handle this? After with Patrick Oh, Like, oh, that's all I'm dealing with. Great, bring it on. I'll take gestational diabetes. Oh, my liver numbers look great, fantastic. I'm not itchy. This is great. So I think just some of the perspective of this is not a big deal, because of where we've been.

PSC Mami- Monika  22:19  What strengths has PSC brought to your parenting?

Britt  22:26  You know, I think it really, really makes you appreciate all the little things. And all the milestones you get to see. And, makes me more emotional. Is that just because I'm a parent now? Or is it the combination I don't know. It makes me not wish away things, but at the same time, it makes me appreciate seeing them grow too.  Because there's always a possibility. And knowing people who don't get to see their kids grow up.

PSC Mami- Monika  23:13  I guess that covers challenges too.

Britt  23:18 But I'm still a person and I still get frustrated. And I still do things as a parent that I'm like, why did I just do that? So I'm by no means perfect because of it. I think every once in a while, it just helps me step back and take a break and think you know what? This is not a big deal. This is great that we're struggling over the fact that I just told you five times to get dressed so we can get you out the door for school. I get to do those things. So I'm gonna appreciate that.

PSC Mami- Monika  23:53 What supports Do you think have been really important to parents who has PSC? What is it that has made the journey I don't want to say bearable, but possible.

Britt  24:05  Oh man, we are really blessed in that we have a lot of family right here with us. So both sets of grandparents are here. And they are incredibly helpful. And so that makes a big difference. I've actually been really healthy for the last four years, five years. So been really lucky in terms of the help that we need and the support that we need hasn't been as great lately.

Britt  24:33  And even at the beginning, I think we had some really good daycare providers that helped out which has been good and I have a job that's really really helpful in terms of and very supportive in terms of if I need a couple days after because I've got medical appointments if I need to adjust a few things with my schedule, because I've got medical appointments. They're completely understanding, which is great.

Britt  24:57  I think those things have all been really helpful and good friends. And then I, you know, I think I can't say enough about the PSC support groups too, and being able to talk with other moms online about, like, Hey, here's what's been going on. What did you do when you were breastfeeding? And you needed to have a colonoscopy? Did your doctors tell you you need to pump and dump? Or did you get to keep breastfeeding even though you had this medication and go through your system? So I think that's been huge to just knowing that there are other moms to reach out to who are in the same situation.

PSC Mami- Monika  25:31  How is your vision for your future and your future as a parent shifted with your PSC diagnosis?

Britt  25:41  That is a big question. Um, ah, you know, I think sometimes it pops up more than others. There are lots of good weeks where I just don't even think about the fact that I have to factor it and then I don't know that it's entirely changed. My vision of the future parenting other than just wanting to make sure that they have good supports all around and I'm just wanting to make sure that they know how much I love them always. It's any parent wants to do but building as many really good and strong memories as possible whenever you can. I feel like it sounds so fatalistic, but at the same time, I feel like that's the one thing that really I feel like crops up thinking that I want to make sure there's as much fun as there can be, just in case.

Britt  26:55  But, at the same time trying not to let it get in the way because anything could happened to anyone. So just because I know a little bit more about what's likely gonna happen to me, it doesn't mean that anyone else couldn't have something crop up all of a sudden. So probably just a good rule of thumb no matter what your circumstances.

PSC Mami- Monika  27:18  Is there anyone that you share that with or talk with that or do you kind of just hold that? As a mom?

Britt  27:26  Um, probably don't talk about it as much as I should. Which is probably why it makes it emotional. And I do talk about it. But yeah, I do have friends, friends that I can share it with and my sister that I share it with. And my husband, of course, we've talked about that, plenty of times. Yeah, I think those are the big ones.

PSC Mami- Monika  27:52 What would you say to a young woman who's been diagnosed who's staring into a future with PSC with all those questions that come with that?

Britt  28:03  Yeah, don't be afraid to ask them. Ask the questions to your doctors. Ask the questions to your friends. In terms of like, what is parenting like for you? Ask yourself the questions like How much do you really want it and and also seek out the support groups online because then you can hear from people who are living it day to day you can see the hard stories, you can see the good stories. You can help weigh things out. But I think eventually it's just an emotional decision. I mean, you can be rational but you can't 100% be rational when it comes to the choice of parenthood. Because you never know what's gonna happen. No matter what.

PSC Mami- Monika  28:50  Is there anything else you want to share?

Britt  28:53  I guess just remembering that every journey is different. And every journey is good and okay. Even when it presents challenges, and not to forget to reach out because I think that finding the support and the other women in similar situations is always helpful no matter what you're dealing with.

PSC Mami- Monika  29:14  Thank you so much for sharing your journey.

PSC Mami- Monika  29:17  Next Episode You will hear from Kirsten and how PSC shaped her family before and after diagnosis. gracias mamis for listening. I'm sorry you're here, but I'm so glad you found us. Connect, share your story and find resources at PSCMami.com. And please subscribe rate and review the PSC Mami podcast on your favorite podcast platform to help others find us.