[INTRO]

Drezden: This is the One Percent Heart, a podcast dedicated to the millions of people living with congenital heart defects. In this episode, we're going to dive into a crucial topic, how patients, particularly women, often face dismissal and skepticism from healthcare providers. Joining me today are two remarkable women: Jillian Tait, all the way from the UK, and Aliza Marlin, an American and fan favorite returning from our very first episode. We're going to discuss their experiences navigating treatment and compare perspectives from both sides of the Atlantic. Quick disclaimer, nothing said here is medical advice. These are our own opinions, experiences, and stories. Trigger warning as we will discuss medical experiences and some trauma. Listener discretion is always advised. With that out of the way, Jillian, Aliza, thank you so much for taking the time and scheduling with all these different time zones going on.

Aliza: Thank you for having us.

Drezden: Could you both just briefly introduce yourselves? Give us some background on your special hearts.

Jillian: So, I'm Jillian. I'm nearly 30. I currently live in Edinburgh, but I'm Canadian, so my accent doesn't really line up there. My parents are from Scotland, moved to Canada, I was born there. Past 5 years, I moved back to the UK to study. Met my husband. Now I'm like a souvenir, I guess I'm stuck here. In terms of my heart, I have Ebstein's anomaly that included supraventricular tachycardia, Wolff-Parkinson-White disease, and an atrial septal defect. All caught when I was born. I've had seven surgeries to attempt to fix and rectify it.

Aliza: I'm Aliza Marlin. Thank you so much for having me back. I was on episode one, incredible experience. I am based in New York City. Nearly 57. Born with aortic stenosis diagnosed at birth, just a few hours later. Multiple surgeries, some procedures, but doing well. I live in a place that has not just adequate or appropriate care, but outstanding care for an adult with a CHD.

Drezden: I'm going to give one last disclaimer. We're going to talk a lot about women's health, how to advocate for yourself, the potential for dismissal, infantilization, and how to ensure bodily autonomy. Let me talk about the elephant in the room. I'm not a woman. I have never been a woman. I'm very aware of my limitations for this topic. There's a thin line between comparing it to my experience and mansplaining as a large white man living in a very beneficial society to large white men. Aliza, thank you so much for joining to make sure I ask the right questions. And to both of you, if I'm missing something big, feel free to dive in with a better question.

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[JILLIAN'S PREGNANCY AND CONSENT STORY]

Jillian: A year and a half ago I had my little boy. My big thing is CHD and pregnancy, growing up they never really talked about that with me. When I transferred to the adult congenital clinic in Toronto from Sick Kids, I was under Dr. Ashlin, chief in cardiology, who was great. Then I met Dr. Swan, who started talking about pregnancy. She emphasized "the sooner the better, we know where your heart is now and you don't want to wait in case something changes."

Fun aside, I moved to Belfast to study midwifery. Dr. Swan connected me with a colleague there. I met my husband in Belfast, he got a job in Scotland, and Dr. Swan had moved back to Scotland too. So I got the same doctor across countries, which was great for continuity.

My pregnancy was incredibly straightforward. No complications, no medication, no hospital stays. Just extra monitoring. Planned C-section at 35 weeks, I'm 4'11", husband's 5'6", our kid was never going to be big. He was chunkier than expected. All well and good.

However, the crux: during pregnancy, I'd been asked about having my tubes tied because my healthcare team felt there was high risk if I had a second pregnancy. They offered it early and said "it's a bit early, we'll broach it later." In October, my medical notes state I was "not in a mental state to make that decision." My son was born in December. One week before birth, I was asked to sign a consent form. I signed it.

What I signed for and what I got are two different things. It wasn't a tube tie, it was a complete removal of my fallopian tubes. A salpingectomy. Those are two different procedures. A tube tie can be reversed, they can stitch them back together. Full removal cannot. You do a full removal if someone's at risk for cancer or something really intense. What I signed for and what was performed are not the same thing.

Drezden: You signed for one procedure and received a different, more permanent procedure. And earlier notes in your file said you weren't in a position to make this decision.

Jillian: That's exactly right. And now my son's a year and a half and I'm still fighting the healthcare system. My mental health absolutely plummeted after. They're like, "Yeah, we anticipated that." I was like, okay, so why was there no counseling beforehand? Why was there no support set up after? I'm 28, younger than the average age of people having kids. And in the States, if you're trying to get your own family doctor to sign off on a tubal ligation, there's a rigorous criteria and a one-month cooling-off period. Not one week and four doctors saying "do it, do it, do it."

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[THE COMPLAINT PROCESS, NO RECOURSE]

Jillian: I put in a complaint to the hospital. They came back and basically said, "Sorry you feel that way, but we think it was fine." I escalated it to the ombudsman, who reviewed it with a third party. They also felt it was a just situation and closed the case. I have no other recourse after that.

Drezden: No recourse. Part of me wonders if the reason the US has such failsafes is because hospitals can get sued for a lot of money. And when you say no recourse, you escalated to the independent reviewer and the independent reviewer of the independent reviewer, and that's it.

Jillian: Yeah. I reached out to a health law team and they said it's not really going to go anywhere. When you have universal healthcare systems like the NHS, one big machine, there's a lot of cogs that'll turn to keep things going smoothly despite some creakiness. Unless you've been killed or they cut off the wrong limb, there's going to be a way to justify it.

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[THE MDT MEETING WITHOUT JILLIAN]

Jillian: I met with another cardiologist in Edinburgh, my husband, and an obstetrician, who I was surprised to see because I thought it was a touch-base meeting. But it was to rehash that after a multi-disciplinary team meeting, which I was not present at, they would not be supporting IVF. And I was like, this is such bullshit. Why are you bringing me here to tell me this again? You've had a meeting about me without me. Who's advocating for me? Nobody's explained why this can't happen. The answer was: "It's very nuanced." Great, nuanced how? No elaboration. I got frustrated and left. I told them very explicitly how I felt because I'm tired of being placid and civil, it's clearly not helping.

The closing remark in their letter was: "If Jillian were to become pregnant, we would happily provide care for her." First of all, you think I'm the immaculate conception? That's not going to happen. But also, do you think I want you to provide care after all of that?

My echoes and MRI have all been the same as pre-pregnancy. There's no empirical data about myself to support the decision. It's all risk aversion.

Drezden: Risk aversion is a great way to describe it. There's a culture, especially here, of risk aversion with cardiologists and CHD cardiologists. It challenges your bodily autonomy.

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[ALIZA'S CONTRASTING EXPERIENCE]

Aliza: I haven't had that experience. I've been very lucky. I've had incredibly consistent care, one medical center from birth until 23, and my adult CHD specialist for the past 33 years. So we've had conversation after conversation. It's never new, it's always evolving. I've always been very clear about what I want my life to look like and what I'm willing to accept. My doctors haven't fought me on it. They've been willing to do their best to get me where I want to be. I know how lucky that is because it's not common. But I can't think of a moment where I didn't feel I could have a reasonable conversation about being told no. We have a good conversation about pros and cons and the data is provided. I've never felt disempowered. Not only am I a good advocate, but the people around me are good advocates and my team understands what I need.

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[THE MENTAL HEALTH SPIRAL]

Jillian: After he was born, I wrote off my emotions as postpartum at first. But then the more time went on, I shouldn't be feeling this way still, but I did. Three months after my son was born, I requested a meeting with the obstetrician. What set me off, someone I know was diagnosed with cancer and his sister was the bone marrow match. I thought: "Oh fuck, my son's not going to have that. I can't offer that to my son."

They put in a referral to postnatal mental health. By the time they picked me up, my son was 9 months old. They said, "By the time we get started, he'll be close to a year, and when the kid's a year, you don't qualify for postnatal mental health anymore." I said, "Why is that my fault that you didn't pick this up 6 months ago?" Adult mental health said, "This isn't really our remit." So I ended up paying out of pocket for counseling. My husband and I have had marriage counseling about it. Around Christmas everything hit the fan, I went on an antidepressant, my husband had to take time off work, everyone was worried.

They offered a referral to a cardiac rehab psychiatrist. Part of me is like, I don't want to move forward. I don't want to be gaslit by someone within your system to convince me this is okay when it's not. It's not a bad haircut. It's not something temporary. This is so impactful to my life and my family's future.

Drezden: Something you said, you were writing off the emotions as postpartum, and then you mentioned gaslighting. It sounds like the opinions were pushed forward in a way that led you to invalidate your own emotions until you figured out what was going on.

Jillian: Yeah. And I'm really lucky my husband's very in tune with how I'm feeling. He'd say, "If you don't call the health visitor, I'm calling the health visitor, because you're not doing well." Having someone who knows you well enough to say that, I was really fortunate.

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[ACTIONABLE ADVOCACY ADVICE]

Drezden: Completely different experiences, completely different healthcare systems. Jillian, you have the dual experience of Canadian healthcare versus English healthcare. What can someone listening do to advocate for themselves, generally as a CHD patient, be it in family planning or for care in general?

Jillian: One, not being scared to ask for time. Two, not being scared to leave an appointment if you're not comfortable. Just because somebody's the expert in the anatomy of your condition doesn't mean they're the expert in how you live with your condition. If they're speaking at you rather than with you, don't be scared to pump the brakes and say, "This is not a productive conversation. Maybe we can revisit at a later date, I'm going to leave." Three, ask for more information. Ask for evidence. Don't be scared to say, "Cite your source for me. Can I see the studies informing your decision-making so it can inform mine?" Put yourself on even playing ground with your healthcare team because it's meant to be a team. It's not them versus you.

One of my cardiologists in Toronto, his first question at every appointment was, "Explain your heart condition to me." Because he wanted to know that you understand. And I would play dumb and say, "I don't know", because I wanted him to outline it again so I could identify where my gaps were.

Aliza: My advice, one, pause. Hit the pause button and say, I need to go away and think about this. No decisions will be made until I come back with my new questions, my decision, my crowd-sourcing. Two, say "I don't understand. Try again." And keep saying it until you understand. Three, and most importantly, especially as women, stop apologizing. Women strew their sentences with "just" and "so" and "really." We apologize with our bodies, our inflection, our language. Stop apologizing for yourself. You have nothing to apologize for. Adding disclaimers or anything that minimizes your questions or statements puts you at a disadvantage. Be bold, be empowered, be brave to speak in exactly the way you need to speak.

Jillian: And don't be scared to get a second opinion. Shop around. If you don't like how things are going, switch providers. Imagine you're the doctor who all the patients keep dropping because you don't know how to speak to people and your colleague's getting the referrals because they have better bedside manner. You're not just advocating for yourself, you're advocating for a bigger group.

Drezden: So the full list: ask for time, be willing to leave, ask for evidence, stop apologizing, bring someone with you, find your community, get a second opinion. Shop around, get the right service, confirm your opinion, talk to people. And Aliza, the "stop apologizing" carries well outside doctor's appointments. When people call me for business advice, men and women but predominantly women, a lot of it comes down to: don't have the apologetic tone. Don't caveat yourself. Don't add disclaimers. If they're going to think you're a bitch, they're going to think you're a bitch anyway. You might as well make your point. Because if you're right, you're right.

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[THE CHD QUESTION]

Drezden: Given everything you've gone through and are going through, what does CHD mean to you? Not the medical definition. What does it mean as you sit here with where you're at?

Jillian: I'm still quite new to the broader community, I hadn't really been involved until this situation came about. Before, I was like, "It's just something I live with. It's fine." I would never label myself disabled. But now, I still wouldn't, but I would say it's like being thrown into a resilient baptism of fire. Things being thrown at you constantly and having to get really good at emotional, mental dodgeball. It's not a very inspiring answer. In the current situation I'm in, it's just firefighting and trying to keep yourself away from the flames. It's not a very sexy answer, but that's where I'm at.

Drezden: But we don't need sexy answers. Being raw and authentic is going to help people listening who are going through something similar.

Aliza: Jillian, I would not have been able to embrace my vulnerability the way you have today. I am so inspired by the fact that you were open enough to tell your story and where you are right now. Which I think is really the definition of what it's like to have a CHD. Being bold enough and brave enough to embrace your unique and authentic self with its flaws and seeing those flaws as being able to help others.

Jillian: Thank you.

Drezden: Imagine you're someone going through it listening to this right now. The value that this will have, even if it's just one person, it makes it all worth it. And you're raising a child right now while you do all this.

Jillian: If people want to DM, if they're in a similar situation or anxious about pregnancy or don't know how to bring up this type of conversation with healthcare providers, my DMs are open always. Instagram: @JillianTait, J-I-L-L-I-A-N T-A-I-T.

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[OUTRO]

Drezden: This has been a powerful conversation and I'm incredibly grateful you both found the time and have been so authentic and vulnerable. Again, I am not a woman. I haven't had these issues. So it's even more impactful to me, there are a lot of moments where I'm sitting here realizing something I've frankly never thought about.

Aliza: It's a pretty brave move for you to decide to host a conversation like this. That's a pretty brave move, Drezden.

Drezden: I think the bravest part was when I called Aliza and said, "I'm a little bit nervous. Can you come, please?" And God, am I happy I did. That was Jillian Tait and Aliza Marlin. Two powerful women advocating for themselves and helping others across both sides of the pond. Reach out through our website, onepercentheart.com. Email support@onepercentheart.com or message us on Instagram at the CHD podcast. Thank you everyone for listening. Talk to you soon.