[Elena]: Welcome to this episode of Out of Queeriosity, I am so excited for this interview today. We have an amazing LGBTQ+ mom with us today who has been on an incredible journey of claiming her own voice and creating an impact in the world. So I am so excited for you to meet Amy. Thank you so much for being here.
[Amy]: Thank you for having me. It's so lovely to see your face again.
[Elena]:Thank you. I have worked with Amy in the past. We did keynote queers together, which was such a great experience. And since that time, Amy has been on quite the visible journey, but before we get into that, Amy, will you just introduce yourself to our audience?
[Amy]: Sure thing. My name is Amy Porter. My pronouns are she/they. I'm an educator by trade. I have bachelor degrees in education as well as music. I've been working in early childhood education for over seven years, but recently I have added public speaker as well as CHD advocate, which stands for congenital heart disease to my resume. So that's what I do. As for my personal relationships, I am a queer married mom with two kids. They're very rambunctious children. My daughter, Frankie is five and a half, and I'm very excited that she gets to go to kindergarten next year. And my son Arturo is turning two mid summer. My wife and I, her name is Sam have been together for 13 years and married for seven and a half of those.
[Elena]: I did not know you had been together that long.
[Amy]: Yeah, we actually met at band campus kids.
Elena]: Stop it! Okay. You have to tell me, what did you play? What was she playing?
[Amy]: It's not nearly as exciting as the movies make it. She plays the tuba and I play an instrument that nobody knows about called the euphonium, which is like a tuba, but smaller
[Elena]: and harder to play!
[Amy] Oh, well, it's better in my personal and yeah, for many, many years, I did not realize I was a queer human at that point in time. We sat beside each other in various ensembles for year after year after year. And then once university rolled around, the light bulb moment came on, and I went, oh, I'm gay. Got it. I played a very slow con and we started dating and here we are.
[Elena]: Now we are procreating.
[Amy]: Exactly.
[Elena]: Oh my gosh. I love it. So that takes us right to the first question I wanted to ask you, tell our listeners a little bit about this motherhood journey that you and your wife went on.
[Amy]: Well, we decided that we should be married. So we did that. And with that decision, we decided to both change our last names to something completely different. So neither of us have our maiden names. We decided to change it to Porter. For my wife and I, it was a pretty easy decision as to who would carry the baby. My wife said she wants to have a baby, not like, have a baby.
[Elena]: I love it.
[Amy]: And I had a pretty strong desire to become pregnant. So that's what we decided to do. Finding a donor is very similar to online dating, from what I understand of the online dating world. You can go on a website and search by height, by eye color, by attached or detached ear lobes. Like it's very specific. So I went through one day because I had a sick day and I went through the entire website of donors and I kind of like shuffled them all off and I narrowed it down to a few people and we decided to go with a known donor. So that means when my children are 18, they can choose to reach out to the donor. And there's a likelihood that he may respond back. I don't want to take that option away from my children if that's important to them. So that's what we decided to do with my daughter. The first time we tried, I got pregnant and then I miscarried and then we tried again and I got pregnant with my daughter. So she arrived and, you know, we had everything set up and ready in our little community of support. And then when she was six months old, our lives took a turn. Over the span of the next nine months we had four of my wife's family members pass away.
[Elena]: Oh my gosh. This is before COVID. If I'm doing the math correctly.
[Amy]:Yeah.
[Elena]: Oh my God.
[Amy]: 2017. So we were not only new parents, we were learning how to navigate grief and going through estates. And we had lost our, our biggest support, which was my wife's mother. So it totally, it changed everything that we had expected our parenting journey to be. But going through this, we realized how important family was. And all we could do was look at our child and go, when we die, who is she going to have? So we decided that having a second child was important to us so that she's not alone. She has shared memories of the people that she loves the most. And that was our decision making for having a second child. And we figured, you know, having our first child was incredibly chaotic. Our second child, shouldn't be nearly as stressful,
[Elena]: Right? You think, okay, we've been there, done that. This should be okay.
[Amy] And then again, everything took a turn. Our donor had since retired, so that meant that he was no longer putting specimen on the market. There were very limited supplies left and during transport to our fertility clinic here in Edmonton, Alberta, all of our donor specimen thawed during transport.
[Elena] It thawed, like it had been frozen, but it thawed while it was being transported?
[Amy] Yeah. Think of, think of, for those of you who are vegan or vegetarian, I'm very sorry, but think about a steak and you go, I'm going to eat that later. You put it in the freezer and you pull it out to thaw to eat it and you go, nah, I'm going to save it for later. You put it back in the freezer. Yeah, it's not going to be the same when you pull it back out.
[Elena] Yeah, no let's not do that.
[Amy] And that's what we had to do. Thankfully, we found two more of our donors specimen halfway across the country. And although not liable, the fertility clinic reimbursed us for those too, which was incredibly great. We tried the first time with all of the garbage specimen and it did not work. It was pretty much just putting very fancy water into my uterus. Then the second try we did, I didn't get pregnant. So it was our very last specimen. I had been on hormone treatments and I was very much done with all of this stress. And I said, you know what? If we don't get pregnant, are we okay with just having one child? 'Cause, I don't really want to do this again. And we decided, you know what, this is it, this is the end. Let's let's use up this last specimen so that we don't have to pay for cryo storage. And then we got pregnant.
[Elena] Oh my God.
[Amy] Yeah, at the end of 2019. And it was like the closest thing to a surprise pregnancy that lesbians can have. We had totally expected to not get pregnant at all. And I said, Sam, I'm pregnant. And she goes, no, you're not. Yeah, we are. So that was the end of 2019. Enter pandemic in March of 2020. Then at 28 weeks pregnant, we found out that my son had a fatal heart condition called transposition of the great arteries. If left untreated, it completely changed our pregnancy where we would deliver what was going to be happening. Like we weren't going to be coming home from the hospital with a baby, unless he had open heart surgery within the first 10 days of his life. And at this point in the pandemic, we don't know anything about COVID. We don't know: Will COVID transfer to a baby while you're pregnant? What happens if they do get covid as an infant? And if I get COVID I can't go visit my son at the NICU. So we isolated really hard and I went to every single appointment alone. We sent my daughter to my sister's house for however long we needed while my son was born and two and a half hours after his birth, his oxygen saturation plummeted due to his heart condition. But because we knew what was wrong, the doctors knew how to help him. They had to medically paralyze him, medically sedate him and rip a hole in his heart so that oxygenated blood could reach the other side. And that saved his life. Without that procedure, he would have died within two and a half hours of his birth. On day seven of his life, he went in for open heart surgery on his tiny walnut-sized heart. And then eight days after that, we were discharged with his only prescriptions for infant Tylenol and vitamin D.
[Elena] Oh my gosh. That's incredible. All because you knew ahead of time. So do you know what the scenario would have been if you hadn't known? If you would have, the baby would have been born, there was nothing visible. Right? And so the baby would have been born and then three hours later, oxygen levels plummet. And then what would have happened?
[Amy] We would have been giving birth at a hospital that is not equipped to prepare for Cardiac intervention.
[Elena] For a newborn baby, yeah…
[Amy] And they would have been scrambling to figure out why he was blue when he came out. He didn't cry when he was born, he was completely silent. And yeah, they would've known that something was wrong, but they wouldn't have known what. And by the time they figured it out, he would have been crashing. So either he would have died immediately, or he would have been rushed to the hospital nearby. But he would have had such low oxygen levels gone to his brain, that there could have been some permanent brain damage.
[Elena] When it is able to be detected, and it's CHD, is that what we're talking about here?
[Amy] Yeah. Congenital Heart Disease or Congenital Heart Defects. So Congenital Heart Disease refers to the electrical and the structural part of the heart, so arrhythmias count as disease. Congenital means present at birth. So congenital heart defects should be visible at the 20 week anatomy scan. But half of all defects are missed prenatally.
[Elena] Okay, wow. I'm going to come back to that. But as it is now, if you are notified, if you do know ahead of time, what is the survival rate?
[Amy] It's very dependent on what the defect is. Some children are living with half of a functioning heart and a completely rerouted circulatory system, right? That's a process of three open-heart surgeries. For my son, for his specific condition, his success rate is 96%.
[Elena] Okay. So you have a kid who had a 96% survival rate because a person with an ultrasound wand was able to find the defect while he was in utero.
[Amy] Correct.
[Elena] And you're saying that half of the time it's present, it's just not found?
[Amy] Correct.
[Elena] Wow.
[Amy] Take for instance, a very famous story that is well-known in our community is Jimmy Kimmel. His son was born with a critical congenital heart defect called Tetralogy of Fallot, which is a combination of four different heart defects. And it was not detected prenatally. I believe the infants survived. But knowing ahead of time can save a lot of stress. It allows you to prepare mentally and it allows for intervention as early as possible because a big part of the problem is that fetal heart anatomy is different than when they're born.
[Elena] I want to go back to something you said, which was, you know, detection ahead of time obviously increases the survival chances for the baby, but it also influences how the parents experienced the birth and experience the time afterwards. Like you were able to make sure that your daughter was in a very safe place during a global pandemic so that you could focus on your newborn baby. And I really am interested in that journey. You were able to really be there and be present because of that information ahead of time. And it feels like maybe that that helped it be less traumatic for you as a mom.
[Amy] I definitely would not want to be blindsided by this information. Still seeing your child struggle to survive. Sending them for an open heart surgery where you know that they're going to be stopping their heart. All of that is still trauma, but it allows you to at least prepare for this giant chaotic wave rather than being completely submerged without knowing it's on its way.
[Elena] Yeah, that makes sense. And I feel like part of the process of trauma is in the aftermath, recognizing what you've gone through and not shutting down all the feelings.
But really recognizing, no I'm on an emotional roller coaster because I just went through this experience. And what came from that for you?
[Amy] It was a very long journey that I'm still sorting through as we continue on. It was kind of, after his scar healed, then I felt a lot less anxiety because with an open incision, there's still risk for infection and things can still go wrong. So I was at least able to take a breather after that point, as well as when, you know, we got the all clear from his cardiologist saying, OK, he's good for the next year. Come see us again in a year. That's the best you can hope for because although he had heart surgery, he's not cured. This is an ongoing condition that we have to monitor for the rest of his life. So looking at that, and I'm an early childhood educator, right? So I love children's books. And I thought to myself, like I have these books for my daughter, you know, “Mommy, Mama, and Me”. She sees our family in that book with two moms and we have books with queer representation. But my son has this very visible scar down the middle of his chest. We can't hide that. I don't want him to be self-conscious about it. Because without that scar, he would not be here. I want him to feel proud and I want him to own it. So having a children's book with some visibility for him was really important to me. So I began looking around for books, with children, with heart defects and children who have a scar. And there's not a lot out so I wrote my own. I wanted to have that visibility, especially knowing that my son has two moms and a very visible scar. Where in the world is he going to get a book where he sees himself in literature?
[Elena ] I love that because so much of what I preach and teach is like, visibility is life, right? I mean, I think everyone who's gone through the LGBTQ+ experience can attest to, there was someone, or there will be someone, who will help me feel like I'm valid. Like, I am safe that I belong, that I'm supposed to be here and I'm supposed to be who I am. Right. And so when you speak about, is there a book where my son can see himself, in all aspects of his beautiful life? You know, I think that is something that so many parents want for their kid and they don't know how to achieve that. Right. It's not like we can all produce TV shows or something, but what is almost pretty accessible right now is writing and publishing a book. And I think it's amazing that that's the route that you took, especially with your background in early childhood education. Like you knew what is one of the most accessible ways that I can make sure that my child sees himself in the world. It's a children's book. It is right. Like anyone can go to a library and get that it is a children's book. And I love that. I love that. So what did writing the book kind of lead you into? What was the next part of that journey?
[Amy] It definitely helped me heal a little bit and heal some of the emotional trauma. I started looking into different publishing routes and doing self-publishing seems like a great idea, but I don't have the money to put towards an illustrator who has the quality of artwork that I appreciate. So I thought, well, maybe I'll send it to a traditional publisher, knowing that I would be giving up a piece of myself, because if I give it over to a traditional publisher, then there's a good chance that they're going to make it a hetero couple.
[Elena] Absolutely. Yeah.
[Amy] Which hurts, but the story still needs to be told. But I decided, you know what, I'm going to make a break for it anyways. And I wanted to have a social media presence because I know having followers can directly translate to getting published.
[Elena] Right. That's very true.
[Amy] So I was like, okay, let's change the narrative of my Instagram from being about my son to whatever it is that I am going to talk about. I didn't know what I was going to talk about, but I knew I was going to talk about something and I figured why not dive into research about heart defects? And I was overwhelmed by the information that I had. There was a lot. I learned a lot and all of it, all of it seemed important to me. And then I look around and nobody's talking about any of this information: that heart defects are missed; that $1.8 billion in the U.S. hospitals comes from children who have heart surgeries. Now that abortion is an issue, parents cannot choose to terminate a terminally ill child who does not have a chance of success like my son does. And they're forced to bring this into the world, knowing that their child is not going to make it, or pay literally millions of dollars to keep their child alive. And I saw all of these issues but I felt like a trivial pursuit master where I was just slapping everyone in the face about Congenital Heart Disease, “Did you know this? Did you know this?” But what was the point?
[Elena] Right? The impact. Yes.
[Amy] And then I saw Keynote Queers, and to be truthful, I hesitated. I came up with a lot of excuses: it's expensive; the class happens right at lunchtime when I'm feeding three children; how am I going to make that work?; Why would anyone listen to me?; I'm nobody. But I mean, by default, if I'm nobody, then I'm also everybody, so why not lead this? This community of people with a shared traumatic experience with birth, why not have a queer leader? So, I bit the bullet and I signed up and I had expected to learn how to book and I expected to be able to polish my presentation, and all of that is true, but I didn't expect to be able to recognize my own internalized destructive thought patterns and my own homophobic tendencies.
[Elena] It's amazing how they show up, and come out when we're ready to be visible, right. We have this need, and I think that your journey is so parallel to the LGBTQ+ journey in general, which is, I started feeling the need to feel seen, right? Whether it's me or my child, that the need to feel seen. And so I'm sharing and I'm coming out and I'm being visible. And then it’s: I need to make an impact; I need to create change. Like I need to use this visibility to make things better for the people that are coming up behind me or that aren't aware that this is coming down the road for them. So I think that, yeah, it's incredible. But when we start that path and when we start that desire to make that impact through our visibility, woooo, those demons show up!
[Amy] And they don't go away, but you learn how. You learn when it's that and when it's not right? You know when it's your own narrative that's coming to haunt you rather than something that's actually legitimate. And I've noticed a lot of parallels, even in my own messaging of things, that I needed to hear: you are not alone; nothing caused this to happen; they were literally born this way; and that getting support early saves lives.
[Elena] Oh geez. Wow. You're right. Absolutely incredible parallels.
[Amy] It's been a very wild and emotional journey aside from all of the trauma that I had experienced. Just kind of looking back at my own life, and my own queerness, and going, you know, all those kids in junior high, they always ask me, are you a boy or a girl? Like maybe I have been kind of non-binary from the start. I didn't really realize that maybe the reason why I had a hard time being pregnant and a hard time chest-feeding is because I don't particularly feel feminine, but I don't really feel anything else. So there's a lot of realizations that I'm still stumbling on now. And I like the journey of finding myself and being able to advocate for myself as I'm learning to advocate for my son.
[Elena] Oh, I love that. That to me is just so juicy, and so meaty. That is why this parenting journey can have so much value. I certainly don't think it's necessary for everyone, but I think that there are times when we really start to question, like, why did I go down this road of having kids? And I think that is where the victory is. It's when we're able to realize things about ourselves as we are helping this other human develop into their full potential, it can be so incredibly healing. I love that. So after Keynote Queers, then what came next? Did you just keep trying to build a following on social media or what happened?
[Amy] I knew that my story would have impact having a community of like-minded people who were encouraging me was very helpful. I haven't always had that support of people who are like, no, this does have value and your story does need to be told and it will make a difference. So I started to look for opportunities to speak. I have spoken now to over a hundred sonography students and sonographers in Alberta.
[Elena] And just to interrupt you and be clear, sonographers are the people holding the ultrasound wand doing the checkup.
[Amy] Correct, Yeah. But they are the ultrasound technicians, but their clinical term is called a sonographer, and they really like it when you call them that. Yeah, so I've spoken to over a hundred students and sonography instructors, which is pretty cool to think of. I have spoken on a few different podcasts, which has been incredible. I spoke on the Birth Hour, which I just randomly pitched one day and forgot about, and then got a call back saying that they wanted me to speak on their show. Like millions of listeners. So that was an opportunity for me to bring awareness that, 1 in 100 kids do have a heart defect, that it is the most common birth defect and that it does go missed so often and then giving parents the tools to advocate for their child at that 20 week scan.
[Elena] Tools, as in like specific questions to ask, or what are those tools that they can use at this point?
[Amy] Mostly it's starting a conversation, and I think knowledge is power. So knowing that that 20 week anatomy scan is more than finding out what flavor of baby you're having, it's a huge thing. Understanding that sonographers are doing a really complicated job. They are measuring and analyzing over 40 different points on your child's body to ensure that they're completely healthy. And that child isn't staying still. They are changing positions and rolling, and you can't see them, right. This is very difficult work. So trying to have polite conversation, because that's what we're programmed to do, isn’t necessarily helpful. I think a lot of people, now that we've been home for so long, trying to do work from home during this pandemic, it's really hard to get work done when somebody is nattering in your ear. I was that person at the 20 week anatomy scan. My wife was there, my daughter was there and we talked the whole time. And I wonder if that's why his heart defect was missed at my 20 week scan.
[Elena] Oh, cause it wasn't until you're 28 weeks scan, oh I mised that. Oh my goodness.
[Amy] Yeah, I went in for an ultrasound because my belly was measuring larger than expected. And there's a good chance that I wouldn't have been sent in for another ultrasound had I not been measuring large.
[Elena] Whoa.
[Amy] Yeah.
[Elena] This is a miracle baby you've got there.
[Amy] It has been, I consider it kismet. I mean, we named our child already before we found out that his arteries were backwards.
[Elena] Oh my goodness.
[Amy] So it's just been a whole bunch of random events where the stars have aligned and allowed us to be successful. And I don't take that for granted. But I've been speaking to parents, I've spoken to sonographers, and when I do speak to them, like it's a really heavy subject. I've been told a few times that they need time to like wipe tears after I present. And then for the Q&A portion, they're very quiet because they don't know what to ask. I give them all the tools. I tell them what barriers they're facing, why things are missed and how they can save the day. Because the sonographers are the hero in this story.
[Elena] Here you are being so visible as a parent and you are also a person who is visibly not gender conforming. Right. And how has that been? And I'm asking this question because we do have so many non-binary and trans people in our community who feel the pull to be visible and to have an impact, and yet there's an understandable concern of how they're going to be received. What is that visibility going to be like for them? What has it been like for you?
[Amy] Most of it comes from my own narrative. I think more than anything else, it's the worry of how I'm going to be perceived. But in my case, like literal lives trump my uncomfortable feelings and my uncertainty about my own self. And I haven't received any backlash. In fact, people want to know more about how my wife felt during this whole situation, they want more pictures of the kids, right? They want to know more about our family and it feels really good to know that who I am and who I do is not an issue. Because really it doesn't matter. Why does it matter? Because every story has value. And in this case, the story isn't even about me being queer, it's about the life of my son. And if it can happen to me, a parent who knew they were going to conceive, who took all of the prenatal vitamins, who took the folic acid, who made a conscious decision to avoid all of the things that you're supposed to avoid during pregnancy, and it still happened to me, then what does it say for anybody else? .
[Elena] Amy, what are you going to do in the next five years? What is your plan
[Amy] A lot, hopefully. Because I learned how to look for opportunities to speak, I found a pitching competition, which I did not win, but it did allow me to connect professionally to two of Alberta's leading fetal and neonatal cardiologists and if they want to partner with me in creating a charity that works to educate sonographers as to how to find heart defects. And I am hoping to be able to incorporate our charity sometime the next year. I am actively working on it as we speak, creating pitch decks, and I have an 18 page document for my business plan all laid out. And it's a matter of finding the two missing pieces, two missing individuals who can help our charity thrive in the long-term because there's such a gap in care. And having a parent advocate who has lived, it really brings the clinical portion of everything out of it and humanizes the experience.
[Elena] Absolutely it does. I have love that, but that's the impact that you can have when you're willing to be visible when you're ready to be visible. That is an incredible impact.
I had expected to do this and like the next seven years, but going through keynote queers and learning the tools, it has definitely expedited that whole plan. And I don't think I'd be here today. If I didn't learn the confidence that I needed.
[Elena] That's amazing. If people want to know more, if they want to get behind you, if they want to get access to some of those tools that you're sharing, what can they do?
[Amy]I have a website that I've created for myself called “one in one hundred dot org” where parents and sonographers alike can find tools and resources as to how to advocate for children at that 20 week anatomy scan. But I think the biggest thing that people can do is really just start a conversation. Our society is so obsessed with gender norms and we really focus on the gender reveal. And as queer people, we know that that's baloney, right? So having, if you know somebody who's pregnant, and they go, oh, I'm going to find out the gender, you can start a conversation and start advocating for children by saying, okay what about their heart health? Did you know that heart defects are the most common type of defect out there? And that it affects one in 100 kids, but half of them are missed. Right? It's a very easy way to ease into that conversation and go, oh, I didn't realize that this, this scan is so much more, it's not something to be taken lightly like this.This is important stuff. So being able to advocate for them would help out so many families. And if you're curious about what else I'm doing, you can find me on Instagram at Amy E underscore Porter (@AmyE_Porter). Maybe one day I'll have a book one day.
[Elena] Oh, not maybe, that is happening. That is happening. Amy and I were discussing and were like, all we need is an illustrator, and when the right illustrator comes into our lives, this is going to happen.It's going to be amazing. I just want to go back. I'm going to make sure that your Instagram is linked in the show notes, but the website, because you've emailed me, I know this, and I want to share this with the listeners. It's the numbers 1 in 100 hundred dot org. (1in100.org) It's not like spelled out. So just the numbers 1 in 100 hundred dot org. Is that correct?
[Amy] Yes, I am very lazy and I take any opportunity to shorten things as possible.
[Elena] That's not lazy. That's being a smart mom. That is efficiency honey. I love it. I would like to wrap with just our final question. I'm so grateful that you were able to come and share with us. Amy, tell us, if you could speak to the human that you were five years ago, what would you tell them?
[Amy] I mean, that's a loaded question because it was literally right before our worlds went into chaos. When my wife and I got married, we chose a song that we didn't realize would very much speak to our experience now called, “I Will Follow You Into the Dark” by Death Cab For Cutie. The world is full of beautiful and wonderful things, but it's also chaotic and it's messy and there are moments of gut-wrenching pain. Everything does not happen for a reason. It's mostly random, but in the chaos you can learn a lot. You learn to prioritize and you learn what really matters. What it comes down to is love every single time. The heartache, the joy, all of it is love. And there's plenty of that to go around.
[Elena] What an incredible reminder, it all comes down to love. And there's plenty of it. There's no shortage. I feel like that's something our community needs to hear over and over again right now. Cause I think the love is not center stage, right? But we can be intentional and we can keep it as the focus and in our own lives. So thank you so much for that reminder. Amy, from 1 in 100 dot org (1in100.org). Thank you so much for being here.
[Amy] Thank you for everything.
