Noor: Today we are here with Aimee and Brandon and, they went through IVF initially to identify risk for a, rare. Plotting disorder called hemophilia. And then in the process found out that, Brandon actually had a different genetic disorder that he, that didn't affect him, but actually ended up affecting their daughter.

So we're here to sit down and kind of learn about what their journey was and, um, how genetic testing ended up, um, getting them answers and, uh, getting their dog with a treatment that, uh, she needed so that she's, you know, healthy and thriving today. Yeah, it's super awesome to have you guys here today and to, um, you know, talk to other families in similar situations about, um, you know, what it's like to, to go through a, you know, a journey similar to yours.

So, um, yeah, I'd love if you guys could just introduce yourselves and, you know, how you guys met and how you guys decided to have kids.

Brandon: We met through a, a friend when I was living in downtown Detroit. And then, uh, after a little bit of, according her, uh, we six months, according six months according her, we.

We, uh, moved in together and we got married, um, a couple years later during Covid, she is one of six. So it was always clear that she wanted to have a lot of kids, uh, as did I. And we then decided it was time. Um, and I think one of the reasons that we're here is, um, before even trying, we knew that, um, Aimee's Aimee was a hemophilia carrier, so we wanted to do IVF so that we could.

Um, you know, detect any, any possible carriers or, um, anyone that had hemophilia moving forward.

Noor: Yeah. So for folks who don't know what hemophilia is, could you kind of describe a little bit about it? Um, yeah. For the uninitiated, yes, a bleeding

Aimee: disorder where, you know, your blood doesn't clot like a normal person.

Um, and my dad had it and the way it works is. When your father has it, there's a a hundred percent chance that your girls will carry it. So all four of us girls, my sisters, we all carried it. And my dad was very secretive. Not secretive, but he was a doctor, so he like was like, ah, nothing's wrong with me. I don't have hemophilia, blah, blah, blah.

He didn't really tell us about it until my older sister had her first son. And, um, he had hemophilia and we didn't realize how hemophilia worked and the genetics portion of it until that all

Noor: happened. Yeah, I think, I think that's actually a really important point. I think that often, uh, like these health conditions and families, they aren't really discussed openly, right.

It's, it's super common that people don't tell, don't share. I mean, I think there's actually cultures where it's even more, um, pronounced than that where it's specifically taboo to discuss. Um, so, so your, your dad actually did, was, was more open than, uh, a a lot of cultures would be.

Aimee: Yeah. I mean, my dad, you know, passed away 10 years ago.

Um, and. I mean, he grew up in India and I think because he was, grew up in India, moved here when he was 20, became a doctor. He didn't tell us anything, any surgeries he had, he would just go to the hospital and like we'd see him like a week later and he'd be like, oh, I was just working. Like, no, he was like in the hospital for, you know, something.

But, um. So when we found out that my nephew had it, then we realized that all of us girls, you know, should be mindful of it. When we have kids, whether it's like we choose to have kids with hemophilia, just to be aware of it, it is more of a trauma based disease. Um, and it's. Care girls can be carriers and males can have it.

Um, and since my dad had it, I am now a carrier and therefore my boys have a 50% chance of having it, and my girls have a 50% chance of carrying it. So because of that, we decided to start the process of doing IVF. Um,

Noor: so what was that conversation like for you guys? Was it like you two chatted about it of like, you know, does this matter to us?

Does this not matter to us? Do we wanna do IVF or not? Or was it kind of you leading the charge and you're saying, yes, we're definitely doing IVF, I definitely wanna know about this. What was that conversation like?

Brandon: I can hop in there. Yeah. You know, and to, to be clear, there are are far worse things in hemophilia and, and not every, and I don't even know if it's common or not to do IVF four, but we were, um, this was something that I kind of wanted to, if we were able to, because of all the great things that are possible with.

IVF If we could stop that from the generations to follow us, I thought that it would be a good idea. You know, there's, there's always worry, contact sports different things is when you kind of start to think about these things. And we were fortunate to be able to at least consider IVF as an option. Not, not everyone is, and we're well aware of that.

And you know, I was the one kind of, definitely not kind of, I definitely was the one. Pushing this. Mm-hmm. Um,

Aimee: and it was a hard decision for me because my mom is very religious and my dad never really talked about his hemophilia, so he lived somewhat of a normal life and my nephew lives a totally normal life, minus the fact he can't do contact sports.

So I was like, I just feel like I am playing with something that doesn't need to be played with. Like I. But as I, we talked about it more, I'm like, okay, so if we have a kid, they have hemophilia and something happens, then I feel like I didn't do what I needed to do as a parent ahead of time.

Noor: Yeah, no, I think that's a, that's a super common, um, feeling is that there's just like an incredible amount of stigma associated with, um, IVF in different communities.

So how do, how do we work through that? Because I think that's something that a lot of people are struggling with. Um, yeah, because there's just, there's different pressures of, um, you know, people feel really differently about it.

Aimee: Yeah. I mean, even now, like, I, so what, when we did it originally, I didn't tell anybody.

I didn't tell, only our family knew. I didn't tell any friends. Um, and even from our family, it was like a mix because a lot of my, uh, family have had fertility issues. So there's that. And then you're doing iv. Um, it was a mix of family, but then like friends, I just didn't, I just didn't tell anyone until, um, indie was like one and a half and now we're like trying, you know, gonna go do another round.

Now I'm telling more people, but in it, I was like, I don't wanna deal with people's opinions and I know people will give me their negative opinions, I'm sure opinion, but I don't.

Noor: Yeah. Yeah, yeah, definitely. So how did you, um, kind of, how were you brave in that moment, right? When, you know, you knew there's gonna be, be people who are gonna, um, you know, pressure you one way or the other.

How did you sort of, you know, have conviction and like, make your own decision as a, you know, you individually and then as a couple to, to do this? Um,

Aimee: I just, you know, it didn't matter what other people thought. He's my husband. We're starting a family. Um, and this is gonna be my family, so whatever everybody else thought I was like, it didn't matter as much to me as what he thought or like what my future looks like with my family.

Noor: Yeah. So what ended up being the deciding factor in that, you know, discussion decision that you guys made together?

Brandon: I don't, I, I think it was just that we wanted to have children. She really wanted to have children, as did I. And it wasn't like she was against it. It was just like. You know, got to the point where it's like, okay, let's do it.

This, let's make sense, let's, let's start the process. And that was the beginning of, uh, the process that's, you know, taken some different, uh, forks in the tor turns in the road. But, uh, you know, we are very, we're thankful for the process for many reasons, but I think that we'll probably talk about shortly because things totally twisted after that.

Um, and it ended up being a very fortuitous thing. Um, that we did do this.

Noor: Yeah. Yeah. So, yeah. So I think a lot of people, um, you know, are, are in a similar situation where they feel like they have a lot of pressure from, um, either like the, you know, religious tradition or their family, um, to, to not do FES.

So what would your advice or thought process be for, for those, um, for those folks to help them make a decision that they think is really, um, right for them, or, you know, how you guys navigated it, what you think might be helpful.

Brandon: Yeah, I mean, I think that those are all fair considerations, but I think like for us, and I think the way to think about it is there's one, there's one goal here, and it's to have a healthy baby.

Um, so if, depending on why you're considering IVF, but if, if the goal is to have a healthy baby, to me, there should be nothing else that gets in, in the way of that. If, if you're able to do that. It's not, once you have, there's things you need to go through initially, but once you have that, the child, nothing else matters how you got that baby or not.

You've brought someone into this world and, and you know, to me it's just something to be like grateful for other nothing other than that.

Aimee: I, for me, the best way to deal with it was not talk about the process. Initially, now I can go back and talk about it and be like, you know what? I have my child and my opinions don't matter as much.

Noor: Yeah. And that specific, um, criticism that you mentioned that, um, oh, this is sort of like meddling with something that shouldn't be meddled with, like how did you guys guys wrestle with that? Or what, what did you I don't

Aimee: think, he never really felt that. He's always been like. Future forward, you know, and like focused on that.

For me, it was solely my family that was saying that to me. And, um, I mean it, I still sometimes feel that way, like I messed with something and then I, you know, then we ended up with, now Indie has this thing, so I was like, is it because of that? But. I wouldn't have indie without what we did. Like I wouldn't, you know, the process got us heard, so I don't know you, it's like a battle that you have to deal with, but once you have that kid, nothing else really matters.

Brandon: And, and I'll say, obviously, she, uh, Aimee's mentioning, you know, how she didn't wanna talk about it when she went through it, and, you know. Stigma behind it, but like now she will talk to anyone about it. Yeah. And like be very helpful And there shouldn't be a stigma, although there is, but I would have to imagine it kind of changed how you view it going through the process.

Aimee: Yeah, totally. I mean, it's, it's, yeah, once you get, once you get past it and you have that kid, like, I feel like it totally changed my viewpoint of the whole thing. Now, I don't have to worry about indie carrying hemophilia. I can focus on this thing, you know, this other thing. But if she also added that, then we'd have to focus on all of it, you know?

And I know there's other things that come with kids, but you just take it one step at a time.

Noor: I guess my response to you, the meddling thing, is that, you know, when you break your leg and you go to the hospital to get it fixed, no one says it's meddling. Right? You're like, oh, well, we have, we have a way in it to fix your broken leg so that you're not, you know, you can, you can walk again, right?

Yeah. And no one stigmatizes that. Yeah. And you know, if you're unlucky and you get cancer, no one stigmatizes getting chemotherapy. Hey, this is a new type of treatment that, you know, a hundred percent chance is gonna get you in remission and cancer free. But you know, hey, this is the percentage of the time that it works, and no one stigmatizes that.

Mm-hmm. Um, so I think if IVF is. You know, it's sort of the same way. It's, Hey, this is this technology that can help more families have healthy babies. And, um, you know, it's just, you know, using science and, and, and medicine to, to maximize the chances of that. Yeah. And, um, you know, yeah, you, you wouldn't stigmatize any other part of healthcare.

So, you know, why, why are people. Um, you know, trying to, trying to dictate, you know, reproductive choice and reproductive autonomy. Yeah. Uh, anyways, those are my thoughts on that. But anyways, I'd love to have you guys get into kind of that journey. Can you, can you walk us through actually, um, yeah. How did you, you know, start IVF and what was the, what was the process like?

And, you know, what was like, you know, meeting your, meeting, your first, your firstborn?

Aimee: We started back in May of 2021. Um, you know, they had to do, because hemophilia isn't like a typical. Genetic disorder that they detect in the regular panel. They ended up, we had to make a probe of hemophilia and so they started with that.

They wanna make sure they can make the probe and then you get into the process. Then we did, um, two retrievals. How long, how long did that take? Two months. Got it. Okay. Um, to make the probe, which, you know, wasn't that bad. And then we started, um. Retrievals and we did a retrieval. And with that retrieval, I don't remember like exact numbers of how many 'cause we, we've done now four.

Um, but we didn't get as many eggs as, or embryos as we would've liked. And then after we sent them out to genetic testing, we only had, um, I think one normal girl. So a girl that didn't have any other genetic. Condition like disorders or um, and didn't ha carry hemophilia. And then we were like, okay, well if we want more kids, let's just do another retrieval now.

'cause I'm young, whatever. So we did another retrieval and then we got three more girls, um, that all carried hemophilia and, and we were like, okay, we'll just bank those aside just in case, you know, we could possibly transfer a girl with hemophilia. 'cause they're really just carriers. And then we did a transfer in November and it was indie and it worked and everything was great.

And um, you know, we, we had her in July. Um, my pregnancy was good, you know, normal, I mean, nausea, all that, but like a pretty normal pregnancy, no big concerns. Um, during her 20 week ultrasound and there was like. An anatomy scan kidney thing, but then it turned out fine and everything was good. First six months were great.

Um, you know, she's a sweet, wild child. And, um, we ended up, we were on vacation in Florida. And we were sitting by the pool and my sister-in-law's, a pediatrician, and my mom and me were there, and we were all sitting there and Indy was eating a pouch. And all of a sudden she just went like, full body limp, totally aware, but like full body noodle, like newborn.

Wow. And my sister and Liza pediatrician picked her up, looked at her eyes. She's like, she seems okay. Six, maybe 30 to 60 seconds passed by. And I was like, I dunno, something doesn't seem right. And my sister-in-law laid her down and then she came back to it and was normal, was a little groggy and yawning, but you know, fully like sitting up and, okay.

So that all happened. I told Brandon about it. I, you know, my sister-in-law was like, I think it was just heat exhaustion because she's, we live in Michigan. It's cold here. We were in Florida, it was like 80 degrees that day. She's like, I think it was just heating exhaustion. I was like, okay, whatever. You know, in my mind, I was replaying it over and over again.

I was like, this doesn't seem normal, whatever. I'm just gonna not bring it up to the pdi, my pediatrician at home. Um, we get home, everything's fine. Two weeks later, we're like sitting in bed. Indie had just woken up and I was, she started getting fussy. I was like, maybe she wants to nurse. So I started nursing her, but she wouldn't latch.

And then all of a sudden in my arms, she went limp again, totally aware, eyes open, conscious, and just like went full body limp. And I was like, is she okay? He grabbed her from me, he's like, Indy, like trying to get her to like move. Um, and like, you know, 60 seconds go by. And I was like, okay, something's not right.

So I reached out to my pediatrician. She's like, well, you know, these, these things called breath holding spells, which are pretty common, where like kids just get upset, hold their breath and pass out. She's like, it's probably just that, or it's just like one of these, um, unexplained events. You know, they'll have these things that just happen and.

It will, she'll, uh, it will go away, but since it's happened twice, let's get like some, like, let's do an ultrasound of her heart. Let's do all these different things just to get some testing done. And then, um, like a week later or two weeks later while we were trying to schedule testing, she had another one, Brandon was gone and I called 9 1 1 'cause I, it was lasting longer than 30 to 60 seconds.

So I was call 9 1 1. By the time they got there, like she was totally normal, but after every episode it took her like 10 minutes to get her like full mobility back, where she'd be able to go from like not flopping over, sitting up to like holding her head and being like, good. So by the time they got there she was fine and we just keep kept going with the testing.

We did all, uh, like the beginning testing through just like our pediatrician's hos, you know, the normal hospital that we go to. And then we decided to make appointments at other hospitals that had pediatric neurology departments. And um, that's when we started talking to different doctors. But all the doctors were like.

Pushing us aside. They're like, she's fine. She's developmentally doing great. She's sitting up, she's doing everything she needs to do. Um, and then the episodes started to ramp up where they were starting to happen like every other day. And it was like getting out of control. 'cause neither of us could focus.

I would have to, I'd be like leaving work in the middle of it, just 'cause like my nanny would be with her, you know? Neither of us could figure out what was going on. They weren't typical seizures. Um, they were, and they weren't seizures, but like everybody said, oh, maybe it's a seizure. So they did a five day EEG at home.

Oh, first they did a 20 minute EEG at the hospital. Nothing was picked up. They did a five day EEG at home. She never had an episode then as soon as they took the EEG off. Um,

Noor: so from the first episode to all the subsequent episodes, how quickly was that time period? From the first

Aimee: to like, yeah,

Brandon: for the, um, the first episode was in February.

Yeah. And the first time we did like the five day 24 7 at home. EEG, um, I believe was in, was it,

Noor: was it

Brandon: like early April? End of March?

Noor: Yeah, it was in the period of a few months. Basically just went from being a moment to being 30 seconds, to being 60 seconds, to being, you know, weekly. Everyone telling us she's fine.

Um, like I'm, that must have felt horrible too. It sort of like you knew something was wrong and then be constantly dismissed. I mean, we

Aimee: were like, doctors didn't know what these episodes were because she was totally conscious, but, uh, like totally floppy. Mm-hmm. And we didn't know what was causing them. We didn't know if there were triggers for it.

We would try everything from like, okay, maybe it's 'cause she's napping too long, maybe 'cause she's napping too short. So we tried, you know, from like eating to swimming, to being in, you know, to water, to hot and cold water. We tried to figure out all these triggers. We couldn't figure 'em out. All the doctors were like.

I've never mo most, I don't think any of our doctors had seen episodes like these

Brandon: A after we did the five day, uh, at home, EEG, and she didn't have any episodes. And of course she had one when you take it off. That's how it always works. We then went to the hospital to do another five day e, EG, like within the same like, you know, same timeframe.

And that's when you had all these different doctors come in and different groups and. You know, it could be gastro, it could be this, it might not be this, and everyone's giving their opinions and she of course doesn't have an episode at the hospital. But all, everything that they're reading looks fine. Um, all of her ets were

Aimee: normal, so they won't.

Like our doctor, our main doctor was like, I don't wanna put her on any seizure medication until like, 'cause that has con, you know, that has implications as well. Um, so I would rather just kind of keep letting things ride out and see how things kind of, if she grows out of it, and like if happening every day, like we were actually going crazy.

And finally, um.

Noor: Was it putting, putting a big strain on your guys' relationship too? Or do you feel like you guys were kind of uh,

Brandon: um,

Noor: together?

Brandon: I don't, I don't, I don't think that it did, but I would say that it can almost get to that point. And like I would say to anyone, um, who's going through something like that, make sure it doesn't, because that is almost as important as anything else.

Yeah. Um, but it definitely gets very stressful. I'm very lucky. How strong she is and because I can't imagine, you know, being with someone who isn't her or, or wasn't able to help me go through that because it is very difficult. First time parents, I don't get second time parents, whatever, whoever it is, it's very, very difficult.

Um, it was more difficult when after all of this testing the doctor said. Sometimes when we don't get, we don't see anything, it's good to do a whole exome sequencing, um, on genetic testing. So we said, okay, no problem. However, alongside that, the doctor said, I think it could be this, this thing. Um, other thing called alternating hemiplegia of childhood, a HC, which is a regressive, very, very, um, you know, something you don't want.

Um, so something bad. And, and typically with that, the episodes are a bit different, but the similarity is that there's kind of her weakness kind of, we realized was on one side. Um, and with that it can alternate, but this was kind of on one side. So we then took this, um, we, we, we did the test and the next, you know, I told this would be four weeks.

It took 10 weeks. That 10 weeks, that's when

Aimee: we were,

Brandon: that's when it was the toughest. That's when I think I used every possible AI platform, uh, asking every possible question, um, you know, and becoming doctors ourself. That's when it was really tough. And so that was basically April, may, June, and the episodes were wrapping up.

She's still developing fine. I mean, these were only, these were part of the day if they happened, but it would ruin the day for us, not for her. Everything else was normal with her phony. Great. Developing speaks five languages. Um, yeah. But, but so then we were, uh, in, nor in northern Michigan, I remember, and it was, um, and, and we knew the, the mutation for the other thing to look for, and we got the test results on July 3rd.

We saw that, it turns out she did have a, does have a genetic mutation called PRRT two that she actually inherited from me. Um, so I actually have it and I did not know, and the next day she had hand foot mouth, so she was a little sick and she actually had her first seizure. Real seizure two, two and a half minutes long.

I kind of remained hopeful the whole time that this would just go away, and so it was a little difficult for me. But the second we got this information, uh, we started reading, you know, as I would hope most people do or maybe not. Every research paper talking to doctors, and we basically, we got connected with someone at Cleveland Clinic and then we also found the top researcher in probably the world who had written all the papers on this mutation.

And we spoke to them, uh, as well as University of Michigan. And the doctor at Cleveland Clinic basically said, this is, well, it's very rare. This is something that is actually. Starting to be more common and it's relatively newly discovered mutation, and a lot of times parents have kids that had seizures and they go away, but they never do this testing, so they never know it's actually associated with this mutation.

So a lot of times they would have parents come in and the f and, and the, the, the father or the might say, oh, you know, I actually had that when I was younger and I also had this, uh, PKD, which is some movement disorders. And it kind of went away. And he basically said, this is, you know, of all the outcomes, this is best case scenario.

We believe it can be treated. There's different things we can do. Um, and he said to me, and I won't forget, he said, some people mobilize, parents mobilize, and sometimes they internalize the situations and they kind of don't know what to do. I. He said you guys are mobilizing and, and that that's the right thing to do.

And I know it's very hard, but we didn't know what else to do. And that was middle of July. So basically we, we, we found out that she had PRRT two, which was genetic mutation that she inherited from me. And we would not have known this had we not done the whole oxo sequencing testing. Um, which found out that she had it.

And what's associated with that is some benign infantile epilepsy and PKD, which is proximal, uh, kines, genic, um, dyskinesia dyskinesia, which can be a movement disorder, and also hemiplegic migraines. And it doesn't always express itself in, in people. And with her obviously it did, and with me it didn't. Um, so yeah, that's, that's, and it now has been, we've been able to kind of.

At least for now with the medication. Totally. You know, stop all of the things that she was having. We don't know. They, they do say that things can develop in early adolescence or when you go off to medicine. Um, but typically it's that, you know, this is, again, we're very lucky because could have been a lot of other things, and this is probably best case scenario given the situation.

Noor: It's an amazing success story. I think. Uh, now I think you guys should, should really, um, you know, you deserve like a huge round of applause. I mean, most people, um, you know, aren't able to, to get to the experts. They basically, they, they talk to them and then they say, oh, everything's fine. And then they don't keep looking for answers.

A lot of people who have genetic conditions, it's like a five year tenure year journey to get a diagnosis. And I think you guys did it all, you know, within less than a year,

Aimee: right? I mean, I talk to people, even now friends and things who like, you know, they're like, my kid has always been a little like, you know, there's been issues with their kid and they never even, like I have a client who just, just tried genetic testing, but different, not the whole genome or Axo and you know, I don't know, people don't take all the steps that they need.

They kind of give up on the way. But I think with. Indy, it was really hard to give up because she was having these episodes every day, and it was affecting our life. Not having an answer affecting our daily lives. I mean, he could not focus on anything. He was like a wreck, and I had to be like, okay, we have to focus on her and making her day the best day and making sure she has a happy life no matter what it is.

So I think that was what we really tried to focus on every day and making sure we were getting answers on the way.

Noor: So some people might say that, you know, obviously in indie is a, you know, your, uh, amazing, uh, daughter and anyone, you know, can't imagine life without her. So some people might criticize the idea of doing the whole genome sequencing at the embryo stage because it might have led to, to not, you know, having, having your daughter today.

What would you say to those folks?

Brandon: I would say that whole genome sequencing helps you prepare better, and that's not necessarily the case at all. It would've been able, we would've been able to get into the right medication earlier. Um, or if it was something more severe, then you're able to give them care earlier in their very critical part of their life when it can affect the rest of their life.

It was something more severe than PRT two. So I think undoubtedly it is. Helpful in, in many ways and just helps you make better decisions or be more prepared. I don't think that it would've, you know, you wouldn't have done something, um, because of it.

Aimee: Yeah. I mean, Brandon has it, and we would've, if, you know, doing whole genome sequencing, we would've known that he has it and he doesn't have any expressivity.

So we would've possibly still trans, you know, we would've probably still transferred her and, but we, like you said, we would've been better prepared to know, like. These episodes could have been triggered by this.

Noor: So a lot of people who are going through, like having a baby are just not aware of genetics, right?

So basically, a lot of people don't even realize that you can have a be a carrier for something. Basically the idea that, um, you know, you're not affected, but your child could be affected by a condition, right? They, they don't even understand that that's a possibility. Um, and a lot of people, even if they know that it's a possibility, they, they don't think it'll be them.

Um, so do you have sort of like a, a, a message or, or thoughts for those, uh, for those folks about, um, what your advice would be for going through the, the process of, um, either just having kids generally or, or, or having kids via IBF?

Aimee: Yeah, I mean, I think that, um, a lot of those people don't. Like even do genetic testing from the beginning.

I think a lot of those people are the ones that end up, um, that are doing, that are having kids like, and they're like, you know what? Whatever we get is what we get and we're okay with it. We're gonna take care of them. Um, and then there's the people that know their, like you said, they're carrier or something and doesn't think it's gonna affect their kids.

But why not? Why not know ahead of time, why not do the genetic testing? And if it's something that you can. Control and financially, you know, get through. Then why not try to give your child the best life you can give them, whether it's find out that they have this condition and do a transfer with that and know that you can treat it with this and this and this.

Or, um, you know. Choose not to go that route because it's too hard on you and you won't be able to emotionally and financially do that.

Brandon: But, and, and, and also in terms of financially, I think that it might seem like a lot upfront financially, but if you're able to spend those costs in the beginning, there are far greater costs.

Uh, if there is an issue later on. So, you know, I think hoping that these costs come down and hoping that people think about these things ahead of time, because this can be a lifelong thing. And, and if you're able to understand something or stop it beforehand, that's to us very important. And I think you mentioned earlier, you know, some people kind of stop going to get, especially Aimee pushed for more answers and pushed for more answers.

And, and no one is going to care about you or your child more than you do. No matter who the doctors are, how great they are. So if you have a feeling that something is off, or you have a feeling that something just doesn't feel right, then it is all on you to push. And to her credit, that's what she did, and that's what I would really rec, you know, it's hard to recommend that, but that's really something that.

Is very important when you are raising a child.

Noor: Yeah. And I think that, um, yes. I think it's really interesting because you guys have as sort of both sides of it, right? So you had a family history, you knew your dad was affected. Um, so you went and, and did, um, you know, carrier screening and the brain, and I think you probably did carrier screening as well, but.

This was missed from the carrier screen because the carrier screen is unfortunately much more limited. It's just looking at a handful, you know, a few hundred genes and, um, because again, this is very penetrance, it didn't let you know about it, right? You would've had to get full genome ahead of time. Know that this is something that you could potentially pass on.

So what would you say to, you know, people you know, like you, or, Hey, there's nothing in, in my family, there's no reason that I, you know, that I can think of to, to get that, to get, you know, more, more screening.

Brandon: I would say that, and it's hard to say this without going through it, but when you go through something where you cannot think about anything else other than your child, there's a way to to to not have to go through that.

Uh, I would, I would pursue that route. And this is a, it's a very easy thing to do, and hopefully it becomes easier with companies like Orchid. It's a no brainer and you're not messing with anything. All you're doing is making things better for you and your family.

Noor: What about people who are scared to get answers?

Right? A lot of people are just scared of more information. They feel like it's info hazard. Um, I don't know what, do you have anything that might, uh, reduce those fears or, or do you think that some people just can't, can't handle the information?

Aimee: Yeah, I mean, I think people, some people can't. I am definitely somebody that.

I want to have the information, but like, I don't need all of it. So for me, I get that point of can't handle all the information. And I think it was really hard for us. I, I actually, actually worked perfect 'cause he was like the one that was needed, the information needed all the answers, wants to get things ahead.

And I am the person that's like, make sure we're living in the moment, make sure we're having things. Um. Making each day the best day. So for us, it was a good balance. We wouldn't be where we are without doing this because of Brandon. So it's, it's a hard route either Which way? Yeah. Um,

Brandon: yeah, I, I believe that there's so many amazing things available to us and more coming in the medical and science world that answers should be.

A positive thing and just help you make better decisions. Um. For the rest of your life?

Noor: Yeah. I think one thing that is, um, really wrong in a form of, uh, self torture is that sometimes people will feel guilty. They'll say, oh, well I have this gene and I feel guilty about having it. And I mean, obviously it's no one's fault.

So, um, I don't know. Do you have any advice for people who are, who are, you know, stuck in that feeling of, of guilt around their genetics? Like do you, what would you, what would you say to them to kind of move past that and kind of. Um, you know, make, make the best decisions moving forward rather than feeling something that, hopefully, hopefully, I, I wish no one felt that, but I, that is the common thing that, uh, I, I heard, I mean, he definitely felt

Brandon: I'm, I'm the one that was pushing for us to do IV up for something that Aimee had, and then I ended up giving indie, uh, a genetic mutation from me.

So I, I, I can, I think I fit the bill pretty, uh, pretty well there. And I would say it goes back to the same thing. You can't change the past or what you have or any of that. So therefore getting answers helps you make better decisions moving forward. And that's how I look at it. Now we know these things, now we know we wanna have more kids.

Now it's something that we can be aware of. It's something that we can help other people with. And that to me is the way to kind of push past that. Aimee being helpful with other people going through IVF stuff because of what she had. Me trying to be helpful, not as helpful as she is 'cause of what I had. I think that you can only look forward and looking forward means getting answers and look and, and helping.

Find solutions.

Noor: Yeah, I think that's super productive. 'cause I think that also, um, you know, it's not just, uh, genetic side, it's also infertility, right? Sometimes when one partner it's, oh, it's, it's, oh, it's because of the spur or it's because of the egg, or it's because of the uterine lining. And there's just like this, like blame gap going on and it's like at.

It's not really productive. It's sort of like, how do we kind of move past this together as a couple? So, um, yeah, it's just super inspiring to, to see you guys, you guys, um, kinda went through, um, you know, so many hoops, but just, you know, we're really, I. Um, you know, persistent and just kept advocating for your daughter, and I'm so glad that the outcome is just amazing.

Like the, you know, the one that we have today where she's doing great and, uh, you guys are, you know, doing, doing great too, because I think that, you know, unfortunately a lot of people play the blame game or, you know, just like the doctors were dismissing you guys. Sometimes one partner can dismiss the other one, and then that me feel really isolating.

So. Um, yeah, just really amazing to see that you guys, uh, you know, went through something that is really challenging and got through the time, um, you know, uh, a lot smarter and more thoughtful because of it. It was amazing to have you guys. Thank you so much.

Brandon: Thank you very much. Thank you so much.