Episode 143: Miscarriage Awareness: The Experience from Both Sides

Dan Bulger: I want to say right at the top here that today’s story is an ongoing one, that Demi and Tom today’s guests actually recorded with us just two days after their embryo transfer. So, we’re getting their story from what I call an immediate perspective, that Demi and Tom aren’t looking back as much as they’re sharing with us in real time. And for Demi and Tom, that’s actually nothing new, as they’ve been sharing their lives with the world through their TikTok channel. And when I say the world, I mean a significant chunk of it, as they’ve amassed nearly two million followers. That’s two million people they have brought along with them on their fertility journey. 

Tom Schweers: We’re a newly married couple, two years married, living in Pittsburgh, Pennsylvania. Both of us have always seen ourselves as becoming parents one day we both got into education for a reason. And that reason is we love kids Demi was an elementary school educator, first grade, and I taught middle school and high school, but I’ve always been like a camp counselor, I’ve always been in the arena of, you know, helping the youth. 

Demi Schweers: So, we got married in August of 2020. And around that time, we also bought a house in August, which was just wild. COVID was happening, we were planning a wedding, moving, buying a house, it was just a lot that we put on our plate and as you can imagine, it was really stressful. August came and when September came and went, and I started to have problems with my vision. I woke up one morning, and I couldn’t see out of my right eye at all, it was terrifying. And I turned to Tom, and I said, something’s wrong, I need to go to the doctor, I can’t see. And from there, it was just pretty much a blur until December, I was in and out of the ER and moved to the hospital. And on Friday, the 13th of all days, I got my diagnosis of Multiple Sclerosis. On the day to day, I have little symptoms here and there. And I manage it through a medication called Copaxone. I give myself a shot every single day to manage it. But there’s a lot of treatments out there just because MS affects everybody differently. But for us, we decided to do compact them because it was safe for pregnancy and nursing. And that is the reason I’m on that medication.  

Dan Bulger: MS is an ongoing disease. But once Demi and Tom felt they had a pathway forward, they started to focus their attention on having a baby. 

Demi Schweers: First few months of trying, we were feeling pretty all right. And then, you know, taking a test, seeing one line, taking a test, seeing one line, month over month over month was really starting to take a toll on us. In December of 2021, I had an HSG. Essentially, it was just a procedure to see if my fallopian tubes were open, and there was free spill to make sure that the egg would be able to travel correctly. And I got the results back a few days before Christmas. And my right tube had something called a Hydrosalpinx, which is just fluid in the tube, and it could have been hindering our chances of having a pregnancy. So that was kind of a shock to us. But we talked to our doctor, she said, you know this, this isn’t something that will necessarily prevent you from getting pregnant so you can continue to try and stay safe. And then about two weeks after that we actually learned we were pregnant, which was kind of scary after hearing ahead of Hydrosalpinx but also, after a year of trying it was quite a good feeling as well. And I had a doctor’s appointment on a Friday. We went in and had an ultrasound and we saw the embryo implanted in my uterus, got the reassurance that everything was okay and then the next day I started miscarrying. We had no idea how common miscarriages were. And we were really surprised to hear those numbers, you know, at least we had a reason as Hydrosalpinx was the cause of it. But then after doing research and realizing how many women go through miscarriages, and how prevalent it is, really is what sparked us to be vocal about our experience, because there weren’t many people talking about it. There aren’t many people who are normalizing the conversation of you know, I had a miscarriage. And this is what happened. And this is how we felt and what we experienced. And that was learning that was definitely a catalyst in turning point for us to you know, make the decision together to share our story.

Tom Schweers: I remember, we both kind of talked about how sad we were and how, you know, horrible it was. But then we also talked about how in a weird way, and I don’t want to sound bad, we were also sort of relieved because of how stressed out we were the whole time and how maybe we didn’t talk about it. But that conversation that we had really brought us closer together. And we knew we had a safe space within ourselves to talk and be open and honest with each other.

Demi Schweers: And so, March was the timeframe that we you know, continue to try and we did conceive and get pregnant again. But ultimately that did lead to the ectopic pregnancy which was a wild wild road in itself. We had less than 24 hours to decide what plan of action we were going to do, and I ended up needing emergency surgery to terminate that pregnancy and a healthy way to ensure my health and safety and essentially my life.

Tom Schweers: We both realized, and both talked about not wanting to go through this again and taking preventative measures to not go through this again. And that’s when we first started talking about IVF as the safest option for us.

Demi Schweers: And with our new fertility doctor, she looked at my bloodwork that I had previously done. And my AMA hormone level was elevated. And we did some other tests and she diagnosed me with PCOS. So, with that I am on a few medications to manage it, and everything has been going perfectly health wise in terms of managing the PCOS and making that switch and getting that diagnosis and healing my body properly. Because I have PCOS, they put me on a lower regimen and dosage because they had a feeling I was going to produce a little bit more. So, the first part of IVF is the stem process. And because we are traveling for our IVF we just took that as a time to just focus on it. I had 64 follicles, which is not very common in the realm of egg retrieval. So definitely high numbers. And as you can imagine, I was super uncomfortable as well, I, you know, flew up overnight with everything. And out of those 64, we were expecting maybe half of them to fertilize and 41 of them did. And then from there, they have to get to the blastocyst stage. And we were thinking, okay, maybe about half of those. But then 32 of them did. So, our numbers were on the higher side the whole time. And every time we got an update, our doctors and nurses were just in shock at how well everything was going for us. And they were like, you know, these numbers are crazy. Do you realize that? Do you realize how incredible this is. So, we have been very thankful and blessed throughout the egg retrieval process, because we know that’s not the case for everybody. And even with our PGT test results, of the 32, we sent 15 of them to get tested and 12 of them came back perfect. So, you know, again, it’s just, it’s just kind of unheard of the numbers we have, but we’re so we’re so blessed.

Tom Schweers: What motivates me is Demi. I follow her lead in being open and honest. If it weren’t for her, I can honestly say that I would not be as transparent as I am or as comfortable with talking about our fertility journey. But seeing her open up and be vulnerable has led me to do the same. It’s not only her opening up but it’s the reactions of people who are so touched and moved, they identify with what’s going on because they have some fertility issues. So, I see that, and it motivates me to do the same. And yeah, we get messages all the time about other families going through it, not just the females, but the men in their lives are also grateful that, you know, I’m there to also talk about it. So, it’s really gratifying to do

Demi Schweers: Being an advocate for yourself is just so important and key and getting the right help and treatment that you need and the comfort level that you feel when you have the right team is superior and makes everything else so much easier.