FOR FEAR THAT MOST PEOPLE WOULD NOT UNDERSTAND
Hosted by Erica Jolene and Kristyn Newbern, with special guest Nichole Rosenberger
Social Media Updates
If you know, you know! Today we embrace the hard, but necessary conversations that we should all be having but often avoid for fear that people would not understand.
Once again, Nichole Rosenberger has joined Kristyn and Erica to discuss everything from finding solace in the connections we have made with other rare disease families, the change in our perspective regarding our identity as parents of children with disabilities, the burden that mothers feel with the societal pressure of having a "healthy baby," our experiences concealing a second pregnancy, and the challenging decisions we came to when each learned that we were carriers of a life-threatening genetic disease. Finally, Kristyn and Nichole share their thoughts on how they one day plan to explain these decisions to their children. This episode is the finale of this 3 part series which has centered around the subject of IVF and Preimplantation Genetic Testing (or PGT).
[Image Description: Light brown background with a white font that reads, “Conversations We Avoid Having For Fear That Most People Would Not Understand.” Framed in a circle at the center of the image is a photo of Kristyn when pregnant with her second child, and Luke, her firstborn, who is kissing her belly.]
Links related to this episode:
I think it's fair to say that this podcast is not being recorded in a professional studio and that lends to many background interruptions, which we try to edit out of each episode. This season's most notorious interruption has been brought to you by our unofficial podcast therapy dog, Charlotte Newbern. I want to admit defeat in this episode in that I could not edit out all of Charlotte's snores. So enjoy this lighthearted entry to a very intense episode.
Background I don't know what it is.
I think it's Charlotte (both laughing). Let me try let me try that again.
We are having this really serious conversation and I'm just hearing garble-garble.
She's like, "flabbabla." Charlotte, Charlotte!
She's like, Can I just go to bed?"
Is that Charlotte snoring in the background?
Can you hear her? Hang on one second. Charlotte (whistles), you gotta wake up.
I'm so sorry, Charlotte.
Look at her. She's so mad at me. You're like, you don't want snoring in that like long story?
Shoot Charlotte. Charlotte, wake up! She's like, Oh my gosh.
She's like your own like sound machine back there.
She is! She's like, Oh, she's so loud too. Sometimes I'll have to like nudge her in the bed because she'll keep me up.
What's her dog's name?
What kind of dog is she?
She's brown. My favorite. And cute and big. And I love to play catch with her.
Welcome to Season Two of Atypical Truth. I'm your host Erica. Jolene. My guest-host for this season is Kristyn Newbern. Kristyn's life was transformed when her son Luke was born with congenital heart defects and later diagnosed with a rare condition called Noonan Syndrome. I like to think of this episode as the finale of a three-part series, which has centered around the subject of IVF and Preimplantation Genetic Testing, or PGT. Once again, Nichole Rosenberger joined Kristyn and I for this very important conversation. So I would highly recommend that before you listen to this episode, be sure to listen to the previous two episodes titled, "Rare Friends" and "Genetic Counseling," because many of the topics that are covered in today's conversation, were influenced by the information that was shared in the past two episodes.
The conversation that takes place in this episode is hard. There's no other way to define it. It's just a hard conversation about many different subjects that we don't usually hear, or openly share about, which also makes this conversation a necessary one. And, my favorite kind of conversation. And I think what makes this episode so special, is that it involves three very different perspectives and experiences from three different rare disease moms. I mean, we really get vulnerable in this episode. And we do so with hope that it helps other rare disease parents feel less alone when facing similar difficult decisions. Kristyn and Nichole both have children with a known genetic disorder. And because their children's disorders were known, they both had the option and ultimately chose to pursue IVF and PGT to build their family. In contrast to that, my family didn't really have that option, because our first child's genetic condition was not known, or it hadn't been discovered until we had a second child, born with the exact same constellation of symptoms. Having had two kids with the same rare disease and medical complexities, it's meant that there's been a lot of conversation in my family about the decision to have or not to have more children. So I had a lot of very intimate questions about what it was like coming to the decision of choosing IVF and PGT to build a family.
And I deeply appreciate that Kristyn and Nichole did not shy away from talking about the really difficult aspects of coming to this decision. We discussed everything from finding solace in the connections we've made with other rare disease families, and the change in our perspective regarding our identities as parents of children with disabilities, and the often static societal perception of us as parents of kids with disabilities. We share about the burden that mothers feel with the societal pressure of having a quote-unquote, healthy baby. And you can probably guess what we make reference to. We each share about the challenging decisions our families came to when we learned that we were carriers of a life-threatening genetic disease. And we also talk about our experiences in concealing certain aspects of our second pregnancies, for fear of judgment, or really just out of wanting to avoid conversations that we weren't ready to have. I share about what it is like to grow up with a disability, knowing that there is some risk of passing those disabilities on to my own children. And finally, Kristyn and Nichole share their thoughts on how they one day plan to discuss these decisions with their children.
I am truly so honored to bring this conversation to you today. Thank you, Kristyn and Nichole. I know that we were all very anxious about this episode to release. So I also want to provide the disclaimer that this conversation, it's based on our personal experiences and our opinions. It does not reflect the opinions and experiences of all rare disease families, nor the community of people with disabilities. But again, I just want to state that sometimes these hard conversations are the most necessary ones.
Last week, you had both touched on kind of a theme, which was the phenomenon of comfort that you received from knowing that another person who you knew in your real-life had a similar experience, a similar medical journey. You know, it really got me thinking because I understand that. Health conditions, disability, genetic or rare diseases, and chronic illness, those things do not discriminate. They can happen to literally anyone. I think that was a hard but honest lesson that each of us had to learn in this journey. So I wanted to talk about that more. Specifically how it was comforting to find someone like yourself who experienced this, but also, as a reminder that we're all vulnerable to this, that no amount of money, fame, or education, or even like a devotion to a specific religion, nothing is gonna promise you healthy. Nothing is going to protect you from illness or accidents that could result in disabilities. or just to complicated a medical journey. So I was wondering if you guys want to explore that with me a little bit.
So, I have a thought on this also. I think, yes, you know, there's comfort in having that prior connection with Kristyn. And, you know, those connections, yes, they're meaningful in their own special sort of way. But I've also found that I've met people because of Liam and his conditions. And I have found connections with them and commonality and a lot of respect for the differences in our lives. Whether it's conscious or unconscious bias, but a certain layer of that is really peeled away, when you know that somebody has been through a significant, relatable experience to what you've been through and it really opens your mind to getting to know that person and getting to know their experiences. I think it's just been a really, it's been an interesting experience. Another interesting side of it. One that I, I personally really appreciate.
Yeah, I think it speaks to the, the, like game-changing perspective. I mean, I remember growing up, you know, we have peers or classmates with disabilities and I remember seeing their parents and thinking, "Oh, that, that mom has always been, or was supposed to be, or is that's...
It was the only version of her that you ever knew.
That I that I ever saw. And I think that static assumption that's made, that stuck with me as I grew up and went through adolescence, and even into early adulthood. Where you kind of see parents who have kids with, with any sort of additional atypical lives, and you almost just assume that it was just part of the original assignment. For me, that was so I think that was maybe something that made it really hard for me at first, to even just accept that this was going to be a permanent thing in Luke's life. And so it was almost like, "Wait, No! None of my life has been preparing for this. And I have absolutely no idea how to handle, you know, a diagnosis like this..." or, you know, as we were going through the genetic journey, and discovering that there was so little to actually know about it, that was even more terrifying for me. And it was just almost like this unraveling that happened. And I think with that came a lot of personal growth. And a lot of eye-opening perspective changes, just like you were saying, Nichole, where it's like you're forced to just kind of strip away some of those guarded presumptions that you have about people in these circumstances because it protects you from it. And it wasn't malicious. It was just like, "Oh, what a wonderful family that's so nice that those parents are doing these wonderful things for their kids." And I would tie a bow on it. And I would just throw it away from my daily life, right? And so then now to be in this place, where it's like, "Oh, my gosh, those parents are people. They had a past, they have a future they are, you know, and so does their kid. And how...", you know, I don't know. I just look back and (sigh) I don't know how I would have gained that perspective without going through this or without being, have been close to someone who has gone through it. But it certainly has changed a lot about my own outlook about other people and other parents, and myself as a parent, too.
When you start sharing some of these stories or having these experiences that it's like, "Oh, okay, oh, well, that was unexpected to happen to me. But okay, well, here's other people that happened to." But then you start talking to people about your own expense experiences, and then you find that everybody has their nuanced experiences, and there's a lot that you don't know that's going on with people. Even if you're not having the same experience as someone, it ends up being very relatable.
Yeah, it really does it, it individualizes the human experience, and then kind of takes away the "they" component where it's like, "Oh, that's just, you know, some group off on the fringes," and it's like, "Oh, actually, my co-workers going through something like that, or my...", you know, it just, it does, it connects everyone. Well, and really, like you said, Nichole, even if it's not the same, the similar experience can be very, very connecting. I was just thinking just now I don't think Luke or Liam, I don't think they share any of the same like specific diagnoses.
No, I don't....
I don't think there's like any. But with such a small, like actual medical diagnosis overlap. We still had, like, I still think such a wild a parallel experience that we both went to about or went through about, you know, a year or so apart. And really, so that started with going to college and then meandered into our, like family experiences and having kids with different congenital heart defects and journeys in the same place and with the same doctors, but then that actually ended up being just the very start of the overlap and the parallel and our lines. And really, I think it was right when I started getting into the thick of it with all of the IVF hormone shots. At some point, we were texting, I believe, and I said something to the effect of us going through IVF or us being almost pregnant or something like that, like giving you the timeline and just kind of unloading the journey that we're going on. And to maybe my, my biggest repeat surprise, you responded with, "Oh, actually, we went through that with Theo," that exact same process at the same location too!
Same clinic. Same doctor. Yes. Again! (Laughter)
I thought, Nichole, you've got like, an on-point sense of humor, but like, this is a little too far right? I remember thinking like...
Wow, this is like a movie! Oh, my goodness. So wait a minute, you guys had already formed a really close friendship. We just listened to an episode where we heard you share about how you could talk about anything like the hard stuff. How come you didn't know that Nicola had already been through that?
I hadn't mentioned that. (Kristyn giggles) I mean, you know, there's an aspect of we were going through the IVF process, and pregnant with Theo. Kristyn and Kevin were going through much more difficult things in that first year with Luke. That first year or so with a heart baby is really, really hard and it was known that Luke had more surgeries coming most likely in that first year. So it wasn't my moment to need support, we were in a different stage, going through the next thing like opening the next door. It's just a different, a different thing. And there's also the aspect of like, people don't talk a whole lot about when they're like working on having a baby.
(laughter) True, true.
People wait until they're 12 weeks. So...
And yet, here you were a leader again, in this, right? Like unbeknownst to either of you, you're heading down this trajectory that it sounds like Kristyn was about to embark on. And neither of you knew about that, how...? I just get goosebumps thinking about this.
I know like whether she wanted to or not, she was...
We might want to be concerned about what the next overlap is.
I know, right? I was going to guess, more of the latter because I wasn't really thinking about the timelines of them. And I was just going to venture that you were, I don't know. I mean, you're so right, like even getting pregnant, the good old fashioned way, society says you have to not say anything until the magical first trimester is over, right? There's a whole set of opinions on that one as well. But regardless, when you're going through something as heavy as IVF, there's even more of a stigma and, you know, caution and controversy. And then when you're doing it for the purpose of genetic testing, who in the world now fits into the category of people you can talk to, or unload that to? So I can, I can definitely see that. And when you were going through that, Nichole, we didn't know there was anything genetic going on with Luke. Right? We didn't have any idea.
I'll add something else to that I don't even think about very much anymore, but I know it was a very active thought in my mind. Thinking back to that time now, I know, we were pretty quiet about being pregnant with Theo. I carried pretty small, so even like people I see every day like if I hadn't told them, like my co-workers. I was probably into the mid-20-something weeks before most of them even knew. And we just kept it very quiet and very private because yes, one we had gone through the IVF aspect. But to even get to that part of the conversation, you have to go through the conversation of people questioning and wondering, is that going to happen again? I don't know that anybody would have ever said anything to me, but like, wondering if we were being irresponsible, because this had happened before and like, are we being irresponsible to take that chance again? Even if they didn't know what our genetic situation was, and they didn't, very, very few people knew. But I just didn't, I didn't care to feel like those silent judgments were happening. I didn't, I just didn't care to have any of those conversations. So we just, we were very quiet about it. So yes, very few conversations.
I feel you so much on that. I didn't feel like I could tell anyone we were pregnant again, until that 20-week mark, when we have this "good bill of health" to present to the world. In hindsight, as you were saying that, Nichole, I was thinking to myself, "Did anyone actually ever say anything?"
I don't think they did. I think that was very much internalized. It's this entire subject of like internalized ableism. And, obviously, I carried some, some sense of responsibility for my child's condition. As if, as if I had any choice in the matter. As if I could have changed it at all. And I also carried that into my pregnancy, as though I have any control of the next one.
It sucks. It sucks that we are made to feel like we cannot be happy about a pregnancy unless we can tell the world that our child is healthy. Gosh, I think about the statements that people make when they're like, "Who cares what the gender is, so long as it's healthy."
Happy and healthy.
It unknowingly puts a lot of pressure on people. on moms, to have healthy babies when, you know, we can make all the right decisions, all the healthy choices and still not have any control of what happens at a genetic level.
It's pretty, I think it's pretty profound that like, for all three of us in very different, you know, situations with our first kids, when we all got pregnant with our second we had to decide whether or not to forego the like squishy, fun parts of being pregnant and that society offers to pregnant women of you know, like, "Oh, let's, let's talk about it. Let's like get excited about it. Let's be you know, public about it." Do you forego all of that to protect yourself from those judgments? And those, you know, potential unnerving and unfair topics? Or do you go ahead and tell the world and brace yourself for impacts and deal with the consequences, I suppose? Either choice, that's not really, it's not fair to have to go through. And I know I kind of chose the latter where we did tell people about the pregnancy right away, not about any of the journey to get there. I certainly got questions, almost entirely well-intentioned, and just kind of like falling out of the mouth questions of, "Oh, is this one going to be healthy?" Or, "Oh, have you heard about the baby's heart?" Or, "Oh are you worried that it'll be like Luke," or something like that? And it like, makes my stomach slip even to like, recall hearing things like that. And, and I do truly and maybe I've just protected myself by believing that all of the like any of the comments or questions were, well-intended, and just out of people wanting because everyone wants health for their child, right, for their baby. But it was still kind of wearing at times, to be like, "Okay, but what if..." I mean, you know, maybe an even note, knowing what I knew about the journey that we have been on, we knew that one specific genetic variant would not affect our baby, we did not know anything else like we did not know any of the other any of the other millions of health risks that come with creating and bringing a person into the world. And so, you know, I certainly felt kind of that anxiety and that burden. Just like you were talking about, Erica that kind of like, you'd like you didn't deserve to make an announcement or you didn't deserve this happiness unless you could prove to the world, a standard met or something of health, right?
I can say too...it can very much come from a place of curiosity. But it is, again, I didn't care to have those conversations with people when I was pregnant with my second, because there were a lot of layers to that, that I knew the answers to and I was still, I'm probably am still, am grappling with how we got to where we are. And so yes, I didn't care to have those conversations, because if what can very much be a very genuine question quickly starts to peel away layers that I don't care to peel away when I'm standing at the watercooler
No kidding. And by the way, none of that incorporates IVF with genetic testing.
That doesn't even bleed into the subject of like, you want to talk about uncomfortable conversation or questions or assumptions or judgments? Or...
That is something, and that's one thing we were very deliberate on, especially when we're going through the process to keep quiet and keep, you know, limited to a handful of people. And not because we were ashamed of it, not because we were, I guess, upset about it or anything like that. But more just to protect ourselves.
That was not a time to need other people's thoughts and judgments and opinions.
Absolutely. Do you think there's any right way to ask those questions? Or should it just be that we don't?
I think still, it really depends on the place a person is coming from. And I'm going to assume everybody asking is coming from a place of good, genuine, a good place...
You can feel when they're not, too. Like you can sense that?
Yes, exactly. You can tell, yes. You can sense when they're not, you can sense when they're just like, looking for the gossip. But I think ask the question because you never know, it goes back to you never know when you're going to find that relating point to somebody.
Well, it kind of goes back to how you and Kristyn met. Your friendship was formed on you being brave enough to ask the question.
For people who are already familiar, on some level, like with the family, or with the parents, or the or the kid, I always appreciate it when people say things like, "Hey, how's Luke doing?" Or, "How's everything going?" Or just leave this very open-ended question for me in a context where there would be enough time to talk about it if there's going on, right, but in an open-ended way, where I can be as detailed or as ambiguous as I need to be at that moment. Or even asking things like, you know, "How is the school year going for you?" Or something like that. And so then you kind of have the control as the parent to offer as much or as little and it's not this, you know, pointed or somewhat intrusive comment or question.
I do not have a clue what IVF or PGT really entails. I have an idea based on like maybe things that people have told me about it being difficult, it being uncomfortable, the process itself, of you know, getting pregnant of the hormone injections, and I don't really understand it. So I'm curious to know, like, what led you both to this decision? How did you decide on this? And what was that experience like for you? Did you know other people who had been through it? How did you inform yourself on what it would entail before making such a huge decision like that, and commitment, really. It's a huge commitment financially. It's a huge commitment, well really it's kind of like a sacrifice of your body because you're going to be undergoing some pretty intensive treatment. So how did you come to those decisions?
So for us, I think the main thing to keep in mind throughout our journey was that we didn't have the end of the book. We didn't even suspect that there was anything beyond Luke's heart stuff going on until he was about 12 or 13 months old. That's when we started realizing he wasn't meeting milestones. That's when we started this whole pursuit of knowledge, to learn what else was going on. And that journey was still, I want to say, you know, close to a year before we even had an official diagnosis. And even that was because we continued to actively, I would say, even proactively initiate getting to the next step of learning each piece or going to the next specialist. Because the things that we were noticing about Luke, they weren't life-threatening. Having low muscle tone, having low muscle strength, different abnormalities in your hands and your feet, that's not life-threatening. So there wasn't any like, there was no sense of urgency there. It was all on us. Because we were just searching for answers, mostly to find out what we needed to know about Luke and how we could best support Luke. And so when we found all of that out, after about a year of discovery, I would say. Then, we kind of stumbled upon the knowledge of knowing that his genetic variant was inherited. And that was not part of the plan. We were not even in the realm of pursuing this to learn about potential future children. But as they say, knowledge is power. Knowledge is also a gigantic burden.
I remember when we found out that there would be a 1 in 4 chance of any future child being affected with this variant, and that a variant could manifest on any scale that could be much, even more severe than Luke's already very life-threatening trauma that he had been through. So when we found that out, I mean, I was devastated. There was no clear answer off the bat. So I would just say that there was no cut and dry, "Oh, yes, this makes sense." And it was not, you know, Kevin, and I, as much as I would love to, like picture us sitting at opposite ends of a beautiful living room table and like, looking up the research and, you know, discussing with classical music in the background and coming to a beautiful decision. I mean, I think I broke down a lot with combating feelings on what we should do. And, and I mean, Kevin did the same. We just, we had, it was not a very pretty or methodical way that we came to our conclusion. And actually, even the whole process of IVF and genetic testing, it was all one step at a time. So we said, let's just look into if that is an option for us. And if it is, what would that even entail? And so it wasn't like, you know, anytime you have an experience like this, people ask how you get through pediatric heart surgery and recovery and all this, because you don't know the end, you know, you just take each step one at a time. So that's how we did. And we came with all of the knowledge that we so proactively sought and gathered, with the, you know, not so official discussions that we had behind closed doors about what would make the most sense for our family, we came to the conclusion that for our family, the only option for us to have another biological child, was if we could guarantee that that child would not be affected with this variant. That that really helps me to give me peace of mind knowing that the choice for us was not what a child should be my next biological child, the choice was, will we have another biological child through this path? Or will we seek other options? And so that was really what we settled on, and then how we move forward and kind of served as our as our direction as we moved through the process. So that's how we kind of came to that decision.
Nichole, how did you arrive to this decision? And what was the experience of pursuing IVF and PGT for you?
So, gosh, Liam was probably about 10 weeks old when we received his genetic diagnosis. And then we knew from those conversations immediately after receiving his diagnosis, that there was a possibility that it could have come just from him like it could have been what's called a de-novo mutation, where it was just new to him and something that spontaneously happened in him. But we also knew that there's a chance that it could have come from my husband or I. And we knew we wanted other children. So we pretty immediately started pursuing genetic testing for my husband and I. And that took, that took a little bit longer. But you know, we were pretty busy with a newborn, you know, babies keep you busy. So he was, I want to say he was almost a year old when we found out that, yes, he had received the mutation for me. So then, we met with a genetic counselor again and she reviewed the fact that me having that same mutation, it left a 50/50 chance that any children that I would have, would also have this mutation. And again, it's on a spectrum. So Liam and I are on a spectrum. I have no manifestation of the condition and he has a lot. His is much more severe, much more severe than mine. So we have that information and in that meeting, the geneticist, she said, you know, that IVF with PGT, you know, she said, this is an option and here's the name of a provider that I would recommend if you guys want to look into that and pursue that. And, for us, it was a pretty, it was a pretty just straight line, decision and path. I knew from just conversations with colleagues at work that my employer provided a pretty good and generous benefit for IVF. We didn't know if all aspects of it would be covered. I think some of it too, is we were still so much like, we received this information, I don't remember exactly when but I remember, I remember meeting with the geneticist after we received the results of my genetic test. I remember meeting with her a couple of weeks after Liam's first birthday and I can tell you, we spent Liam's first birthday in the hospital following his second open-heart surgery. And we had spent more than three months of his first year in the hospital, like, that's not even counting all of the clinic visits. And I had this tiny, 14 pound, one-year-old, who's wearing like, 3-6 month clothes. So we were very much still just on that...but he was great! Like he was so I mean, we just enjoyed him so much like we knew, we're ready for more kids like, yes, he has a lot going on. But like, we want more kids and, you know, we're ready to like, move forward with this. And so we were so much in that medical world, on that medical mindset in our day-to-day life with him that, it was it almost didn't even faze us to have another child and another pregnancy to have so much medical input in intervention.
I wanted to ask you, just so that people who are listening who may have some preconceived notions or opinions about IVF and this genetic testing. When you think about this variance, and how it could have affected future children. I imagine that you weren't thinking, "I don't want another Luke," because Luke, we have heard you just completely gush...
I wish like in the sound people could like see her smile right now.
She's blushing because he's so, so cute and sweet.
It's not that you don't want another Luke. So tell me what it is so that people can understand just a snapshot.
So I'm very glad that you asked that. I appreciate that you asked that because I know the answer in my head and I just assume it for everyone else. So I appreciate that. And you're so right, like, even just thinking about what does I just it, like love is such an understatement for how I feel for my kids. But our decision really came from a place of how can we best maintain and strengthen and grow our family. Luke is the best thing that happened to my marriage, our personal relationships, our individual perspectives, both mine and Kevin's, he has brought so much joy into this world. And I get chills thinking about what he will do in the future, for the world. Knowing and being honest with ourselves, about what has been required of us physically, emotionally, mentally, financially, to support Luke, and each other, and ourselves as a family, we had to take a hard look at that, from all of those perspectives, with the knowledge that we had, and with the options available to us, what was going to be the best way that we can continue to support Luke in everything that he needs, and support each other and bring another person into this family. So, so yes, I'm so glad that you asked that because there could, there would, there could never be another loop, right. And there, there was nothing about Luke that I would take away from him or from us or anything, you know, he, he is absolutely perfect for me.
I could picture having another kid with the exact same level of impact as Liam had. If I could get exactly a second Liam, and we could have exactly the same outcome, and like the exact same little boy...oh, my goodness, I would take, I would take like 10 of them! I would go broke on daycare bills because I would take 10 Liam's. Like he is the sweetest, funniest little thing ever! He's amazing! But he's really hard stuff. And he doesn't want to go through it, he has not enjoyed that. Those experiences are really shitty. When he wishes we could take that away from him. He will ask us, "Can I just get a new heart? And then we don't have to do this? Why do I have to have the funky liver?" Like, "Why do I have to go do labs, I don't want to do this." Like he just wants new organs. So that, you know, he thinks if he gets new organs, he doesn't have to go do the crummy parts. I had the information. I knew that that spectrum, anything in that spectrum was possible. We had the information, we had appropriate resources to do IVF and to ensure that another child did not have to go through that.
I think that does hit on a very important point that, you know, this is it's an equation that everyone calculates on some level as they're planning their families, and they're thinking about potential new children entering into their family dynamic, is just has a lot more variables in our equation. If you think about that genetic variant that Luke specifically has, we've been through so many close calls. We've been through so many times where there were so many complications from surgeries that have resulted in even more like even riskier procedures and even riskier, you know...there's just so many variables to this. You know, that's not even taking into account so many other potential manifestations that any of these variants can take. And I agree with you, Nichole, for us, it was we had this knowledge that we had so proactively, determinedly sought out and we were in this privileged spot of having the resources available, though not easily accessible, available to pursue the path and after personal reflection guide was the decision that we had to make, specifically for us as a family, including this new potential person that would be entering in. And to support Luke, in his honor.
You know, we do not have the same opportunities, because we did not have the kind of information you guys had. And we probably wouldn't have had the resources, if I'm being honest. I mean, our careers and everything about our lifestyle changed drastically after Margot was born. But I will say, when we found out we were pregnant with Caratacus a part of not telling people until we had what we thought was a good bill of health had a lot to do with our own fears of, you know, could we manage having another child with the same or worse medical condition? So I wanted to just bring that up, because like, I think there might be people questioning, why didn't you just adopt? Or why didn't you just not have any more, if that was such a big fear? But I think that's an unfair thing, because what we're completely dismissing is that all three of us had a very traumatic injury to motherhood. And I know for myself that I still wanted that, quote-unquote, normal experience. I really wanted that. I thought that would fix me and I spent a whole first season in this podcast detailing how wrong I was about that. But it is really hard for me now, that I have two kids with the same diagnosis, the same medical complexities, the same, you know, similar, very similar needs. I couldn't imagine my life with two of them, but now it's even harder to wrap my head around what life would look like without either of them. Having our hands very full and having lived through this experience twice, we made the decision we couldn't handle anything else. I mean, that was it for us. I don't really think resources would have changed where we came to our decision, we just kind of be like, "Oh, nope, we broke the mold with these two. And that's, that's it for us." Would you guys agree that some of your desires stemmed from wanting that kind of normal experience?
Yeah, I guess maybe, yes, we still had this vision for what our family would be and would look like and Liam's condition didn't change that. I mean, for me, it would it never, like changed my thoughts or opinions on what I ever adopt or not adopt, or, I would say, have more kids or not, was not really part of the discussion, because we knew we wanted more kids. As far as like adopt or not adopt, like, that didn't mean that had no... Liam had no impact on my, like, personal thoughts on feelings of that. It was just the way you know, we just went about it. We forged ahead with what our plan had been, it just took a little bit different of a path.
Yeah, no, I agree. Like, Margot didn't change our desire for wanting more kids.
It is interesting to the scrutiny that is placed or the justification, the need for that justification, that's felt like, I never felt that the need to justify having Luke.
Exactly! Oh, my goodness, yes.
And, you know, my friends and peers who have healthy first kids are never scrutinized. In fact, they're only encouraged and often pressured to have the second. And I think as a society, we are normalizing different ways of growing families and we are growing in that aspect. But it's a little bit more slowly, I think. You know, we've we have a lot of friends who are couples who have gone through a lot of fertility challenges and have had to had an entire fertility journey and our experience with IVF I truly don't place on the same level as their journeys with IVF. Not even...
Not even close.
No, neither do it.
...Just in my opinion, because so for us, our main challenges with IVF and our experience with it, I would say probably first was financial, and figuring out a way to access that financially. And then second was physically, it is grueling. And you are so right, you sacrifice your physical-self for like, I don't know, months before even becoming pregnant, and then that physical sacrifice begins. So, for us, yes, that was tremendous. But that has nothing to do with the emotional trauma and all of the, you know, feelings that are associated with the fertility challenges that a lot of our friends and peers have faced. And I say that because I think society in our culture has grown in accepting, or at least, making that a bit more of an acceptable topic of conversation, even though it should be very, it should be wholly accepted, widely accepted by everyone. You know, that's a just as viable and realistic of a journey to growing your family as any other journey. So I think we're kind of on, in steps of acceptance that not everyone's, you know, family planning looks the same. But I think this is different.
Everybody takes different paths. And I yes, I think Kristyn's, right, like it's, it's becoming more of an open conversation, and not just something that like the gossipy women sit and talk about it. You know, what I'm saying?
Well, and like another thing that I didn't even think about, but it's such a huge component of this, building your family is that I know for me, I wanted Margot to have that experience of a sibling.
I wanted for a lot of reasons. I mean, just, I mean, some of it was selfish, but a lot of it was just like really pure and just like wanting her to have this peer, who understood her like no one else understood her for who she was, loved her for who she is. And I wanted that for Margot. Disability or no disability medical complexities or not, she has that. And I'm so glad we did that. She has this amazing little brother. That's a whole other component of this is like still giving our kids that normal experience. Their disabilities didn't stop us from wanting more from wanting I mean, we all knew that there would still, maybe you guys had less concerns, but there's still that like fear of like, what if it happened again? And to a certain extent, we were well willing to take that on.
Oh, yes. We only had no concerns about one thing. You know...
We still had all the other concerns I think, I think that's something that we had to keep telling ourselves to, was that, "Okay, we're going to decide to do this, we're gonna decide to go through this whole process knowing that you still have you have all of the risks, minus one."
This one. Okay.
And that's an important clarification.
I'll even add, we knew that Theo did not have the genetic mutation that Liam and I share. But that was the only thing we knew. We did not even know that he was a boy until he was born.
Nope. We didn't even have that. Yes. We didn't even have that. Like we, we had one piece of information on him one piece of information. And then that's it. And they just, they can identify, they can identify like, the more common conditions that trisomies cystic fibrosis, sickle cell. Like you can you can add other tests on there to find out, does this embryo have other conditions. In our case, we did not. We had that option and we said, No, we're still taking all of these same risks that we would be otherwise. We want to be able to identify if an embryo has this risk, this one specific anomaly and be able to make a decision of whether or not to use it.
You guys share I mean, how this was not an easy decision to come to. But also not, you weren't just hand-selecting the child that you wanted, you were just eliminating one risk factor, one very scary, life-threatening risk factor. So I want to know more about all the weight of all those decisions, and really, how you unpacked that, or maybe how you're continuing to unpack that, then
The moral dilemma that I at least personally faced and like, the challenges and the questions that really kept me up was more of, you know, my initial thoughts of if we had this information somehow, prior to having children at all. Does that mean I would never have had Luke?
Yeah. And I yes, I would agree with that. And I worry much more about how do I explain to Liam that I didn't have the opportunity to make this decision to spare him the difficult medical procedures he's been through? Because I know that is hard for him. Like, it's very hard for him, he he, he would 100% take away...he's not, he doesn't he's not old enough yet to understand that we can't take that, we can't strip that aspect away and still get him. But he would, if he could, he would. He'd absolutely, he absolutely would. So yeah, I worry much more about the conversation with him of we were able to spare Theo those experiences, but we couldn't spare him.
Well, I mean, cuz that's something I've, we absolutely think about all the time is, you know, as, especially as the boys get older, and they start noticing their differences. And, you know, I'm, I mean, Luke is so intuitive, that he already kind of internalizes a lot, notices everything and then internalizes it. And so I've thought about that conversation a lot. And I and that's, truly, I think, a beautiful thing that has happened here. That there's no way we would have known and I think that kind of answers my previous, you know, moral dilemma or question, was that with with our medically complex kids, we have learned to throw what-if's out the window, long time ago, right? Like, stop! That is not the right road to travel. So I couldn't what-if myself into if we had known, if we had had these pedals and all this information prior to having kids, would I have made the decision and then, therefore, I would I not have gotten Luke - and all of these what-if's and what-if's...none of that's relevant. Because it never would have happened. And so having Luke and being the people that we are, and being the family that we are, and, you know, this the strength that we had, and the persistence that we took, led us to this knowledge, and you know, all of the stars aligned. And Luke was able then to give Ozzy his health. And so when the boys get to an age, when they're not throwing toys at each other's faces, and screaming and throwing tantrums, about who's in each other's space, I think that I hope at least to deliver that message to them in a way that makes sense to both of them.
Yeah. I love that.
You know, keeping in mind that you did have this opportunity to do the genetic testing on your second child. This opportunity that you didn't have with your first children. They now carry that genetic mutation. So have you guys thought about those conversations with your sons and how that might look or sound,or...? And I'm gonna, I'm gonna preface this by saying, I have thought about this question a lot. This is a question that I thought about before I even knew genetic testing was possible, when I was just a kid wondering what my mom had chosen me if she could have? Thinking about myself and my disabilities and how they did present complications for my family...and then also thinking, would I want to prevent that? And ultimately, there was a part of me that did. I certainly didn't want a child to have to undergo as many surgeries as I went through knowing full well that like, I'm definitely I could not imagine who I would be or what I would be doing without those. But I didn't want another child to have to experience exactly what I had to experience because what we aren't touching on that we have kind of briefly explored is the trauma, the pain, the very real, life-threatening concerns that these variants that we've discussed, have within them. There's no right or wrong answer here because I'm telling you as an adult who thought about this, not only as a child, but as an adult, like, it's complicated, there's no right or wrong answer. But I'm curious how you guys have kind of imagined navigating that.
So I will say, I've definitely thought about it. And that was one of the first questions that I asked whenever we got Luke's initial genetic results, and learned that it was inherited from us. So with Kevin and I, both being recessive carriers, and Luke getting both of those recessive traits, he will have a 50% chance for any of his future kids, unless his partner would be....
You've clearly done the math here!
Right? Like there's, there's all this math, like, if they were a recessive carrier, then it would be...
Yeah. And if they are, obviously, if they're affected, it will be 100% chance. And if they're not, then it is a 50% chance. So my plan at this point would be to provide Luke with that information. Based on the differences between 25-30 years ago, to now I wonder what technology and science and family planning-related processes there will be for Luke whenever he's at an age where he wants to pursue that or if he chooses to pursue that. And I wonder, you know, I just wonder if it'll look so different than what it looks like now that all of my overthinking, which I have done relentlessly about it will be completely obsolete.
Oh, that would be amazing.
That would be amazing. I know. I know.
What do you think, Nichole?
I don't even think about it like that far. I think about it in terms of if the options are the same as they are now. And I know for my husband and I, we have already made the decision that we will provide Liam and his future spouse, we will make sure that we have a savings account, to financially support for them to have at least have the opportunity to go through IVF preimplantation genetic testing and diagnosis. Because I know, I know that Liam would not have the condition he does if he could make that choice.
Yeah, and I think that is something that is left out of some of these conversations about the idea of this style of family planning being a form of eugenics. Sometimes I feel like my own voice doesn't get heard in that conversation, which is that I did not enjoy having 32 surgeries. I don't want someone to unnecessarily have to go through that. I certainly wish I didn't have some of the trauma that I've carried around my whole life. If, if I could have this voice and all these experiences, without the flashbacks. Without the pain, there's a lot of pain, there's physical pain, but there's also emotional pain. And this is a conversation for a different episode. But like there's a lot of societal structures that don't allow this to be easy. Part of it is the way we've historically treated people who are different. Part of it is the lack of resources disabled people have that make, that makes the idea of a life like mine, difficult to imagine. And it has, has made my life difficult if I'm being honest. So if I could eliminate all those things, absolutely. But I just don't see those things being eliminated, as easily as maybe removing that genetic variant. I just want to acknowledge that it's complicated, not just for the parents making the decision. But even as a person who is disabled and has thought about how my own disability could impact my children. At the heart of this subject is family planning. And that looks different for everyone. At the end of the day, it should be that family's decision. And I personally think every family should have an equal opportunity to make those decisions.
I really, truly, I appreciate you both sharing so much about one of the most vulnerable topics.
I am too, I'm sweating for you! I'm sweating for myself! Just thank you both. I really feel that you're excited experiences have really opened my eyes. I hope that they give maybe a new conversation for other families to you know, maybe just, we talked about it being an option, maybe someone did get the news about their child's genetic condition. And the person who delivered that didn't give them this option. Maybe just by listening to this, they'll know. So I really appreciate you both taking the time to do this.
We appreciate you, by the way, so much. I mean, I like when has the conversation been recorded with the perspective of you know, that Nichole and I have experienced and then also with, you know your perspective that you have seen? I don't, I couldn't can tell you.
I mean, we all three, we've said this in private, like we have so many similarities and yet vastly different experiences, but also this common thread, and I want to hear more of these. I hope this is the first of many of these conversations, I really do.
I am so grateful to these wonderful women who graciously shared this vulnerable experience with me. Their openness, honesty, and authenticity, made this difficult conversation a really enjoyable one to have. I know that we can all agree that these topics are complicated, and they have many layers. And it's my hope that as we begin to peel away the layers of these experiences, we can have many more conversations like this to come.
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