Cleft Lip & Palate Education: Melissa's Story

In this episode, Jacqueline connects with a mom she's known since elementary school and they discuss both of their sons' birth defects. Melissa educates listeners on cleft lip/palate and what that journey looks like for her son. Jacqueline chimes in with her shared experiences as it relates to her son's bilateral clubbed foot diagnosis. 

Topics discussed...

• Birth defects
• Cleft lip and cleft palate
• Clubbed feet
• MFM and anatomy scans
• Speech therapy
• Oral surgery
• Education and support

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Transcript

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Hey, everyone. Welcome back to the show. Hopefully you're staying warmer than I am over here in Chicagoland. We had just gotten through a winter storm and now it is just freezing temps. I'm talking like feels like negative 30 below zero.  I don't know why as a Chicago and I get shocked by this every year.

Like it's not just me. Everyone's like, oh, my gosh, it's so cold and the snow. But like, to be completely honest, we had. A really, really mild December. Like I think it rained and was warm, and it's, you know, mid January and snow is to be expected  here in Illinois.  Doesn't make it easier. I don't know.

 My house is freezing. It's always cold.   We got to make sure our cars will start and bundle the kids up and yeah. So that's what's going on over here. Just trying to stay warm.  A quick update on my daughter. So, our surrogate is currently 27 weeks along and I know I say this every week, but I just can't believe how quickly time is going.

Um, I'm officially in, I'm not going to say panic mode, but I'm officially in the mode of like, Oh my goodness, like we are bringing a baby home soon, like in three months. She's due in three months and,  it's time for us to, to get in gear and get things moving, you know, as a loss mom and someone who has dealt with multiple pregnancies after losses and then rainbow baby, loss, 

I mean, it's, it's really hard to stay positive and allow yourself to be joyful when pregnant or when expecting. You know, with every pregnancy, I have these like milestones in my head of when I thought I would feel confident in the pregnancy and confident that we would bring a baby home. But you know, after losing a baby at 20 weeks and having a baby at 24 weeks and, and watching everything that unfolded after that in the NICU for four months, there's really never a, Perfect number, you know that makes you feel good It's not until baby is healthy and in your arms that you can kind of like take that breath of relief and Be fully immersed in joy But that being said I am trying my best because this is a different journey it is a different pregnancy and it is a different person carrying a  I have full confidence in our surrogate and everything has been going so smoothly in the pregnancy that I am just starting to allow myself to feel joyful.

So we have started working on the nursery, which has been really exciting. We have a crib and a changing table and a dresser and a chair and. I've organized all the clothes and the closet.  I already had a lot of things  and I was given things that were passed down from my sister in law and my niece.

There's really just like the big important things that we're still waiting to get, you know, like the car seat and a new stroller and,   like more new technology that I might not have had with the boys. But for the most part,  we have a lot of the things.

So the finishing touches will be coming soon on the nursery. I have to decide on either wallpaper or paint, um, some curtains, maybe a rug, just kind of like the decor part of things. , but the big stuff is in there and it's organized. If you're interested in how it turns out or want to stay up to date  on the nursery,  feel free to follow me on Instagram at motherhood underscore intended, and I will share progress. 

So in today's episode, we are going to be shining light on birth defects. There are so many different birth defects out there. If you find yourself in a situation at your 20 week scan, where you are given knowledge that your baby has a birth defect, listen up, because 

this is going to give the perspective from two moms who have been through it. And if you're curious about or navigating a cleft lip or cleft palate birth defect or clubbed feet, this is the episode for you. My guest today is somebody I know. All the way back from like kindergarten. And she's going to share her story of her son's birth defect and how she's been navigating his cleft lip and palate.

And I'll chime in with my experiences with my son's bilateral club feet and how we've kind of navigated that and what that looks like for our children going forward. Take a listen.

  Hi, Melissa. Thanks for joining me on the podcast today. 

Absolutely. Thanks for having me. It's great. 

Yeah, I'm excited. You too. I'm excited to catch up because we go way back to like elementary school days. So I love that it's come full circle and we're here to talk about our mom life experiences. I love it. It's been a while.  

It sure has. Gosh, I think kindergarten or first grade. 

Yeah. Yeah.  I'd say, which is so weird because now my son is at the elementary school that we went to and it's pretty surreal like being in the halls of like our elementary school and I'm like, this feels smaller. Like it was so much bigger from our point of view back then.

They're like, wait, I was once in this gym. I was once in this LMC.  

Yeah, it's wild. It's a very weird experience, but I guess just shows how, how old we are.  I have a lot that I want to ask you about your motherhood experience so far, but let's start with the basics. How long have you been married? When did you have your first child? Let's just kind of start from the beginning of your family story. 

Yeah, I've been married. Actually, we went to high school together, so you know him. Yeah. I've been married to My husband, Eric, for, gosh, it'll be 10 years this May. Where does time go? Some days it's like, okay, I remember the wedding like it was yesterday. Other days it's like, uh, uh, uh. 

Like you can't remember a time before, like, being together? That's how I feel, yeah.  Um, yeah, we've been together almost way more than 10 years, but yeah, almost. Married almost 10. And then, uh, we started off with like the typical, did the puppy thing first . Mm-Hmm. dog mom. And then, uh, Caden, my son joined us in 2019, April.

Okay. That's awesome. He'll be,   what is that five then?

 We started kindergarten registration in January. I'm like, whoa, not ready. 

I know it's overwhelming. Yeah. The kindergarten transition, not only for the kids, I feel like, but like for, for me, that was overwhelming but, you know, after a month it's.  Yeah. 

You just went through it, right? 

Yeah. This is Hunter's, yeah. He's in kindergarten. And, um, yeah, it's wild. I remember registration time came around and I was like, am I missing it? Am I too late? Like, what's going on? What do I need to know? It was so stressful. And even the first month of school is an adjustment, but then they, they fall right in line and, and we do too.

That's how I feel. I'm like, all right, I'll just be along for the ride on this part of the, of the, of the 

Yeah,  totally, totally. Okay, so,  2019, Kayden, ,how was your pregnancy with Kayden? And, and was getting pregnant, was that something, you know, were you just kind of like letting it happen or what was your plan?

Yeah, just let it happen and then obviously we wanted to wait a while to just enjoy married life and spend some time taking some trips without a kid and all of that good stuff that we wanted to enjoy in marriage first  and then had no issues until that 20 week ultrasound. 

Yeah. So you had a seamless pregnancy and then that 20 week anatomy scan, which is so exciting, but, can also be nerve wracking.

But again, as first time parents, you're not usually thinking that way. I mean, what was, are you probably just excited to  see him on the big screen? I'm sure. 

Yep. Excited to see him on the big screen and find out the gender. And I'm just excited for that first big milestone. I felt like it was the first big milestone. I know there's several during pregnancy, but I felt like that's the one that like you look most forward to. And then 

I think it's like the one that makes it. Like your pregnancies seem very real, you know, because now baby looks like a baby on the screen and you're seeing all the things and you're like, Whoa, there's actually, it's not like a little gummy bear inside me anymore. It's like a human and there's that size. Yeah.  It's definitely the first big milestone for sure. 

It's not just a jelly bean on a screen. 

Yes. Yeah. It makes it real. So explain to me your anatomy scan, how that went and what that looked like for you guys. 

Yeah, I'm sure very similar to yours because yours had a clubfoot, right?

Yeah, yeah, Hunter, uh, yep, the 20 week scan was clubfoot and then never again did I ever look forward to a 20 week scan.  

That's how I feel. Tear wracking. If we ever go through it again, it's going to be a totally different scan. It's going to be, oh, cross our fingers and hope and pray that it's just everything is normal. Cause yeah, that 20 week ultrasound, I'll, I'll never forget that day. 

Yeah, absolutely. 

Yeah, and the tech obviously can't tell you anything, and you're trying so hard to read them, and they're trying so hard to just keep a straight face, and then, I don't know if yours went this way too, where the tech didn't say anything at all, and then just said I have to, I have to go out to the doctor, the doctor will come back in and talk to you, and I was actually fortunate enough, , because I had worked for a company that automatically referred all of those people.

Yeah. pregnant females to maternal fetal medicine regardless of risk factor. Yeah, we actually got to have a high risk,  20 week ultrasound and then the maternal fetal medicine doctor came in and broke the news. And I actually had worked with,  several speech therapists and I immediately knew when they broke the news to me that,  for sure it was going to be a cough lip. And they can't actually 100 percent say with certainty from an ultrasound if the palate is involved. 

Oh, interesting. Okay. 

But like pretty high percentage that it is involved. So they just prepare you for that. 

Okay. Wow. That's crazy. I did experience  same thing when we were there for Hunter's ultrasound again, like first time being at an anatomy scan. And we were at MFM just because we had gone through IVF and high risk or whatever. Which is nice  I'm so glad that you had that opportunity to because they just know so much more and  the technology is usually better to all the things. So, yeah, same thing. She did, you know, her whole scan.

You were just like blissfully looking trying to figure it out. We already knew he was boys. We were just kind of just like watching seeing him and then she's like, okay, she's like the doctor will be in a few minutes to talk to you. And then like out of left field, just  just told us about his club feet.

And, I don't know how you were feeling, but, everything in hindsight is so much different right like in the moment that we were told that hunter head club feet I was just like  terrified and crushed and just like scared and I was like of course there's something going on like of course there's something and I was worried about like So many things I'm like, is he going to be able to walk?

Is he going to be able to like be a normal kid and all this stuff? But when I look back now in hindsight, especially, as things have gone on and he's gotten older and everything, I mean, the clubfoot was just a bump in the road and, a challenge for sure that came with therapies and surgeries and things, but, not as heavy as, as that first initial shock of hearing it, what was kind of going through your mind when they said that your son had cleft lip? 

My first immediate thought was, oh my gosh, uh, this is not going to be the journey that I expected. Yeah. Um, this is, I don't know what to think, to be honest, because  You know, you, you don't know the phrase that you always say, you don't know what you don't know. And  this is first time going, first time going through this ultrasound and it's first time being pregnant.

It's like, whoa, what, what does this look like? What does this mean? Where, where do we go from here? Who do we go see next? What do we do? What caused it? A million thoughts run through her mind. I'll never forget the one thing the tech said was do not turn to Google, do not turn to Google.

I was told that as well. 

So you know, what do you do when they leave the room again? You pull it up and you start, you start doing your own research. 

For sure. Yeah, it's a lot to take in at once, especially like at that 20 week mark, you know, you're halfway through your pregnancy. You're just kind of  realizing that this is a  baby that you're growing.

I mean, obviously you like dream about having a family and everything, but that 20 week ultrasound, seeing it on the screen really makes it feel real. And all of a sudden, like all this information is dumped on you. And , parenthood is overwhelming. As it is, and then knowing that the second your child's born, you already have something on the docket  to figure out, in addition to just being a first time parent, it's, it's a lot. At this point,  did you know anything about, this birth defect? Did you know anyone with it or have any background on it? 

Obviously, like I knew actors that had it, that you see commonly on the TV, like Joaquin Phoenix 

I didn't even know that. That's, 

yeah. Yeah, he has one. So that was my immediate thought was, you know, who do I know who's had one? But then I quickly, and one of the, nurses there had actually referred me to reach out to another nurse that worked at the hospital that had just found out that their child was expecting too. a cleft lip and palate.

So I was able to connect with her and then ended up connecting with a Facebook support group and I'll say that was the best. I don't know if you were able to do that after you received that diagnosis of club feet.

I actually I was in a lot of support groups at the time for IVF and, and miscarriage and all these things, but just because of I think Hunter being born so quickly, I didn't even like, cause we found out and then three weeks later I was  on hospital. So it all happened very quickly, but I will say that, yeah, Facebook groups. Oh my gosh. They were a godsend for many different reasons for me for sure. 

I look back and, you know, how did, like, our moms do this, like, back in the day when you didn't have that support to turn to? It's like, I guess you turn, turn to your, you know, religious support groups,  I don't really know. 

Yeah, or like, like your neighbor or like, I don't know, like it was just such a smaller pool of people like to find someone that actually understood what you were going through was probably slim to none. 

Yeah. And then immediately finding out that you then once we had that diagnosis, I don't know if you went through this too, you then have to follow up with maternal fetal medicine for like what I don't remember what the cadence was, but it was pretty frequent that we then had to had to go and get things looked at.

Okay. Yeah. I think just with Hunter's situation and already being  deemed a high risk pregnancy, I think I just remember going there.  I felt like I lived at MFM like all the time,  which I wasn't mad about. I love those doctors and they're, they appreciate being in their hands. So it was fine. But, that's interesting so they had you follow up regularly then. Was this like with ultrasounds throughout the rest of your pregnancy? 

Yep, ultrasounds because they then want to keep taking measurements, keep taking pictures, and they like to see if they can, because sometimes it can be really obvious when the palate's involved as well, because the palate's super internal, so it can be so hard to see on an ultrasound.

But just depending on the way the images they get, sometimes they can get more clear ones that they like to, to see and to be able to, to know what's going to be occurring up front. And then that allowed us to during pregnancy, we were able to meet with doctors,  back in the day before they could catch this on ultrasounds.

It was, you find out your baby's born with it, and then you're able to start coping and getting doctors lined up. And,  there's also special feeding equipment involved for a newborn with it. So we were able to be a little more prepared. So that. That part was a blessing in disguise. 

Yeah, absolutely. Oh gosh. Thank God for technology. I think about that all the time too, because  in the same respect,  obviously gave us time to process like what was to come for Hunter and his feet and everything. But , in  a small silver lining too, with him being born premature, they were able to start kind of doing PT on his feet way sooner.

And being that young, his, bones were just so much more malleable and things like that. So, yeah, weird, blessing in disguise, just knowing sooner rather than later to be able to process it all and, get prepared for what was to come. So when he was born,  what did the feeding journey look like from the start?

Yeah, feeding means, when the palate is involved, they can't suck. There's no, no suction. So that means breastfeeding is automatically off the table. Unless you're going to be on a diet. Um, so you have to, there's like three or four different specific bottles that then have certain attachments that you can attach parts to that then allows them to chomp on the nipple instead of have to suck.

So I also had to kind of mourn that loss a little, like expectations and hopes in a pregnancy  that then, uh, pumping is a little more challenging than when  I know you were, you had success with it.

I did, but I also  have, I'm like, Oh, never again. Like I still get like the chills when I think of all the pumping I did. Um, yeah, I, I did, but again, different situation, you know,  four months, I wasn't the primary caregiver for Hunter. So that started off as my only really task and so, um, it was a little different but then again when I went on with Noah and pumped for him that was, that was a lot because it's like double duty.

You're pumping and then you're feeding and cleaning the parts and all the things. It's a whole, it's a whole thing. Yeah.  With the special bottle and everything, did he catch on to that right away or did it take time? Okay.

It took a little bit of time. So we did have a week long NICU stay so that he could fully, so that the speech therapist was there to help, , making sure that he could, cause sometimes it's trial and error.

Sometimes the one type of bottle, I mean, just like any baby, sometimes they prefer certain type of bottle, but then, you know, there's. Specific bottles that you can only look to using. So then the speech therapist is there to help guide through that process. 

Okay. Well, that's kind of nice in a way I was like, how do you even just get sent home and figure this out? I mean, not that anyone wants to make you stay, but at least it's for like support and education and things like that. So that's nice.  Did that continue on like after you brought him home with speech? Is that regularly a part of his therapy? 

Yes, speech was a regular part as an infant, but then it got to the point where we were discharged as an infant because he was latching onto the bottle and. chomping and getting the intake that he needed. So then we got to be discharged. But then as soon as 15 months hits, uh, they start speech therapy backup regardless, because automatically with a cleft lip and cleft palate, speech is impacted. And not just from a feeding standpoint, but yeah. Tongue movement. I mean, the anatomy is different.

Yeah, for sure. 

15 months we had weekly speech therapy appointments and then, COVID kind of threw a wrench in that.  , we had to take a pause. . Good times. Good times for sure. Yeah. Ugh. So wild to look back on. I know you  had to take a pause on it because it was, they went to video visits only and I'm like, what's the point of a video visit with like an 18 month old, like  

Hunter was a year older and we were still doing therapies during  covid time, but we had to put a pause on it too. 'cause they were trying to do  physical therapy on like Zoom and I'm like. What?  I'm like, that's not the thing. We'll just like, again, didn't also realize that COVID was going to be so long of a thing. I was like, we'll wait. We'll wait till this silly thing's over. I didn't know what we were in for, but, um, yeah, the zoom that it's hard. That's hard. 

Yeah, that was hard. So I took a pause and then got back into it. And then, speech can 10 years on, probably gonna need speech therapy until,  uh, unknown, but most  kids have it all the way through. Until adulthood, it's okay until they stop growing and that was one thing that I learned,  working with speech therapists previously to finding this out.

I had thought, oh, you know, they go in and they surgically close the defect and you're on your merry way. It's just a little blip and done. Yeah. And it's much more than that. It's 

okay. See, I didn't even know that. I was like, okay, you have surgery, you fix it. And boom, like, yeah,  you're good to go. Yeah, it's not like that.

No, no,  that's what I wish. But, now I wouldn't change it for anything. Yeah,  because it's one to two surgeries, almost.  Per year for most cleft kids until they stop growing and then to there comes a point where there's like a gap, like three to four years or three to five years where you get to go without just until I mean, no. 

No, cleft palate and lip is actually the same. Yeah. We are going to see so many different combinations, the measurements. So it's just as they grow and as things change,  surgery might be needed Most common ones is closure of the lip and then closure of the palate and from there, there's usually some revision thrown in.

And then the next big one they usually do is a bone graft, cause when you're born with a cleft lip or cleft palate, you're often missing teeth, often missing bone up in the gut.  And in the palate, so they then have to help generate new bone growth. So they then take, bone marrow from the rib or hip.

Okay, wow. 

And fill that in.

That's crazy. I mean, that, it's, obviously, of course, it's more involved. It seems so simple on the outside, like, oh, out of surgery. You know, with children that you see with cleft lip, you see, obviously, the physical changes that are being made. But you, You don't, at least from my point of view, unless you're in it, you're not thinking about like all the different things that impacts. That's, that's so crazy. So how old was he when he had his first surgery?

He was three months old. 

Okay. Wow. How are you feeling? The lip.  Okay. Closure of the lip. How are you feeling at that point? I mean, A three month old going through surgery is, I'm sure, a little nerve wracking. 

Very. Uh, I will say though, we had met with, during pregnancy, since we found out 20 weeks, we had met with three or four different Cleft teams in the area to then pick our team that we felt most comfortable with. And I'll never forget, we walked into the appointment with the team that we picked and we immediately knew in the first 10 seconds that we could totally hand our baby over to the head nurse of the team and the plastic surgeon without a doubt. So the first one I. A few tears were shed, but I think I was so kind of weirdly prepared for it, with being able to find everything out at 20 weeks, meet with the team during pregnancy, have a prenatal visit with them, that it just,  It was just like, okay, we have to go through this.

This is what it is. But then afterwards, that was rough. We had to syringe feed for, I think it was three weeks, three or four weeks.  And it was, you know, one or two people had to hold them down while the other one then is pushing the syringe and the formula.  down the mouth and it's, you know, he's screaming, screaming bloody murder and you just feel so bad. There's nothing you can do. You just have to grin and bear it. 

Oh my gosh. Wow.  That makes total sense. Like I keep forgetting that you had a whole half of your pregnancy to really process and prepare and like, yeah, understand that these Surgeries are  pushing him, you know, to help him,  along the way and with these different milestones. So it's a little different. It's not like he was having some emergency surgery or something that that's scary. Um, 

And our cleft team. Really prepared to like the lead nurse, she's just so calm that she just kind of prepares you for everything takes that layer off of it all at least.

Yeah, I swear nurses they're the ones who make or break an experience. Of course, you want great doctors and people absolutely know what they're doing, but the nurses play such a huge role and the whole thing, regardless of what you're doing, in my opinion.  

Oh, absolutely. They spend more time with you than the doctor does. You know, the doctor comes in, looks for 10 minutes, and then that's it. 

And especially when it's like with your child, because that level of, like you said, that like comfort level has to be there, or it's like,  can be a scary experience. So that's awesome that you found out. A great team 

and living in a in Chicagoland area because I look at like in the yeah in the club mom support group on Facebook and there's some people that like live in Montana or Alaska and you only have a choice of one team.

Yeah, I know that I will say shout out to the Chicagoland area because I have found so many doctors, like,  the best doctors in so many different areas like with Hunter and his club feet we found.  One of the best so it was pretty pretty lucky and awesome to be around Those options because there's people who like fly in and drive far to get to this level of care And so yeah, it definitely puts things in perspective I'm grateful to be in an area that has those resources for sure 

for sure 

so  three months old had his first surgery So he's like four now.  How many surgeries total has he had?

  I said four total at this point. 

Four. Okay. 

And then he's gonna have a fifth surgery in February. 

Oh, wow. Okay. And so with every, so the speech therapy too, I mean, like you were saying,  as they're growing with every, surgery as well, obviously the structure's changing. Are you relearning kind of eating and talking and all of that? Okay. That makes so why 

speech therapy is so involved,  both talking and feeding. We've been really fortunate. Uh, a lot of cleft lip and palate kids, especially cleft palate,  suffer from sensory feeding issues and we've been really fortunate to not, to not have needed. Any that's good for that. Yeah. So I'll take that as a win. 

Yeah, for sure. That's awesome. That is definitely a win.  I'm sure your son, I mean, he just has, by default, have to be just a resilient little guy. I mean, obviously he doesn't know any different, but does this, does he seem affected by it? Describe your son a little bit because, yeah, I'm just picturing, like, resilience is the first word that comes to mind. 

Yeah, when people ask me, how do you describe him? I'm like, um, Obviously, you know, caring, funny, but resilient is definitely one of the words that I used to describe him. And when he hurts himself in some way and like a daycare, he'll, uh, bump heads with another kid and there's no tears from him. Yeah. And the teacher's like, um, he hurt his head, but he didn't seem too upset by it. And I have to wonder, like, maybe he's got a high. pain tolerance. He's much worse pain with surgery.

I'm not even kidding. I think you're onto something because I feel the same way about Hunter between just everything you experienced in the NICU. And  he's the same. Like for a while I was like, did you feel that? Like, I'm actually concerned that you're not reacting, but I think it's just all, it's relative, right? Like, I don't know. I think they do probably have a higher pain tolerance. 

I have to guess that they do. 

Yeah, I agree. I agree. 

There's definitely a worry, like, down the road, especially when he gets a little older and you know, kids have to encounter different social situations where it starts to become noticeable that kids then notice that there's a scar there on his lip. Definitely worry about that, but I guess we'll tackle that as a Happens. 

Yeah, I'll be curious to I'm sure, you know, I always I feel like we never give our kids enough credit because I worry about Hunter all the time. I worry about all my kids, you know, all the time. But, especially with kindergarten. I'm like, Whoa, this is like real school. Like they're going to be making real friends like preschool, like Everyone's friends like it's, you know, you're just learning and, but kindergarten, like you choose who you sit by at lunch and you, you actually play with whoever you want And it's scary, but I think we don't, I mean, at least I've learned in the last few months that like, you don't give your. 

oNce you send them out in the world, they're usually ready and they will find, their people. Like for me, and this is so like minimal, but Hunter got glasses right before going into kindergarten. And I was like, Oh my gosh, I hope he's not like. I don't even know if that's a thing anymore.

I hope he's not picked on. I hope he's not this first day of school. He's like, mom, so and so sits across from me and she has glasses too. And we're friends. And I'm like, Oh, great.  Like they just, they'll the confidence that our kids have, especially, I feel like going through things through birth or not knowing any differently.

Like I think Boys just have, I'm sure this level of, confidence that we don't even know is there until they're like out in the real world. So I think you'll be surprised and how that goes, but totally normal to, oh my gosh, worry about our kids because it's like sending them off into the world.

The kindergarten is like the first time. And a big lesson in like, oh, I can't control everything.  

No, definitely. Definitely nervous for kindergarten, but yeah, take it as it comes and tackle tackle. 

Exactly.  Exactly. So I'm curious as we're talking about this, because I just, I don't know a lot about it. Is.  A cleft lip and cleft palate. Is that a common birth defect? 

Yeah, it's actually one of the most common ones. Uh, 1 in 700 are born with it. And then obviously there's different statistics with just cleft lip, just cleft palate, both.  But a form of a cleft lip or palate is 1 in 700. So fairly common.

And obviously there's definitely causes, certain medications. can have an increased risk with it, but I wasn't on any of those family history genetics, which We have  no known genetics with it. So it's just just a fluke. And you know what? Maternal fetal medicine had reiterated to me is sometimes you just can't prevent everything. Things just happen and you just have to accept that. 

Yeah, that's a good point. I was going to ask just because yeah, I wasn't sure if it was something genetic or how if it's just random because that's the same thing with clubfoot. We didn't have any  anyone in our family with it or anything. It is just a random, which again, I don't know the statistics on that, but I do know that it's More common than I realized, like, one of my good friends even told me that she's like, she, and she had no memory of it because she's like totally fine now, but she was like, oh yeah, my mom told me about that a while back.

 I had clubfoot as a baby and I was like, huh, like, and you don't even know about it? Like, I'm curious, like, if Hunter even knows about, his birth defect, because  I don't know what he has a memory of, but he definitely doesn't talk about it now, you know? It'll be interesting as they grow up, obviously in your situation, your son's, it's, Something that he, will be going through for a while and, and working on it so it's not like he'll forget, but it's interesting. I feel like the kids still have different opinions on it than, than we will. 

Oh yeah. And I think the majority of like them learning it is when they look at pictures, like they look at pictures and they realize they're like, wait. Something's different, something's not normal. What, what, what is that? 

Yeah,  I mean, at four, has he looked at pictures of himself or does he understand that yet?

I don't think he fully understands it, but he definitely looks at pictures, and he definitely does notice, but he, he's just not phased. I mean, it's all he's known his whole life, so he's just like it is who I am. Yeah, it'll be interesting to see how that changes as he gets older and starts to have more questions on it.

For sure. Like today we were actually, we had to go into the city of Chicago for an appointment with,  a cleft team consists of usually a plastic surgeon, an orthodontist, a dentist, and this is all starting at like birth,  speech, Therapist, a ENT, and then sometimes there's like a social worker psychologist involved too to help the family and help the patient, especially as they get to a more, pediatric related age where they start to express and experience things.

But today we were, at the ENT to have his hearing checked just to kind of get prepared for, the surgery in February. Okay. Because When you're born with a cleft lip and palate, it's your nose is involved, but then it's also the ear canal too.

Oh, okay. Interesting.

Yeah. I didn't think that I've learned.

Yeah. I didn't even think about that. And I also didn't realize there's that many people  on your team. And that makes sense. Like when you said orthodontist, I was like, Oh, right. Like, there's just so much more to it that that is affected that you don't think about. 

Yep. Starting at three weeks old, he actually had a retainer that  we had to put in and take out daily with a denture paste and it just  helped with feeding and it just helped bring the pallet closer together where the gap was to make  the pallet surgery easier for the surgeon and it just also helps because then it kind of closes off the  pallet.

Yeah. That's really interesting. Yeah. There's so much more to it. 

There is. I forgot all about those appointments.  

Isn't it funny how it just like comes back to you?  But that's kind of what I mean. I feel like when you look back on a journey like this or to anyone listening who, you know, has been told that their child has a birth defect, like when you're in it, like the beginning of it, it's so much, and there's so many little things that you are managing and doing But then you'll blink and there'll be four or five and obviously.

So there's still stuff to be done, but like, it's just, you forget, you forget all these things. Cause it actually,  it seems so small now because you've got this human that you're raising and it's crazy. I think about that all the time when I like recount Hunter's NICU stay and all the things that happened.

I'm like,  I mean, it was such a big, big thing, but now I'm like worried that he's making friends in kindergarten, you know, like, it's just, it's all perspective. And so for anyone listening, who's, going through this now, just know that. it Will change and it will evolve and you will not feel so overwhelmed one day. 

No, like you said, stuff becomes a blip until the next milestone hits and then it's like, okay, buckle up. Here we go. 

It's constantly changing. For sure. Oh my goodness. Yeah, I'll be very interested to see like  as he gets older and he looks at the pictures too and he starts to notice more, if anything, he'll just be like, realize how far he's come and, and everything that he's had to learn over the years.

The only comparison I have is like with Hunter's baby pictures of him in the NICU, just like how small he was and with all the wires and everything. I've shown him, but I don't think he's been old enough yet to like.  Really understand.  so yeah, it'll be interesting as he gets older and to see like, no, but like you weighed as much as you were as big as like a beanie baby.

Like,  um,  yeah, it'll be crazy.  I think it's important to share everything they've been through as they get older and, and have these memories. And, you know, even though they're hard,  I like having pictures and things of that to just remember. Yeah. Not only how far they've come, but how as parents, right. How far we've come in the journey. So. 

Yeah. That's one thing that the, cleft team lead nurse has said to me multiple times. She's like, you're doing a great job. You're doing a great job. Like just  reassures you that you're doing everything you can. 

Yeah, I mean, you already, as parents, we already worry about, like, all the regular things, so to add something else on top of it, like, it's always nice to hear that you're doing a good job, for sure. This has been very insightful. I didn't know the extent of everything that goes along with, a cleft palate, cleft lip, birth defect. I did not know how common it was either. That is so, so interesting.  For anyone who might be in the same position at that 20 week scan, getting news that they're not prepared for, even the same news, you know, with a cleft lip or a cleft palate. Is there any advice that you would give to somebody in that situation? 

For sure, avoid Google first off right away because sometimes  it's not always worst case scenario.  But definitely do your homework. Meet with various medical teams that you can in your area because keep in mind, it's not just one surgery that you're handing your baby over.

It's multiple. So you need to be comfortable with. With the team that you pick and then support support is huge. So make sure you join a support group if that's something that's helpful and then, educate, educate your family and friends because I'll never forget. Like I had,  someone that just kept,  gifting multiple different cute pacifiers,  at the baby shower.

And it's like. That's with not having suction, they can't take passive letters. So, you know, just educating, educating others and yourself and making sure that you have a strong support group for yourself and those around. 

Yeah, I think that's great advice. And the education piece  I'm glad you mentioned that because that's huge and, by educating others that you're close with in your life and everything, it's only gonna help you because then everyone can understand and know how to best support you and support exactly. So that is great. 

No one means harm with anything they necessarily say. Yeah. You know, it's, you just don't know. So education is kind of key. 

Absolutely. That makes me think of, it had to have been his baby shower, which I had my baby shower with Hunter while he was in the NICU and it was like a month after he was born, which was just a very weird experience because everyone's like, he's here, but he's in the hospital.

But same thing I was gifted all these cute little onesies like jammies that have like the footies and everything. But at that time he had little casts on his feet and then he had had to wear boots with like a bar in between so he couldn't have like. Footie pajamas. And that was just another thing that made it very apparent to me that I'm like, I should probably explain the situation more to people just so everyone knows like what he's going through because  that situation was the first three years of his life. He was in those boots and, and different things to correct his feet. So I really liked that advice. Education in any situation, in my opinion, is key. 

Education and also make sure that you enjoy your pregnancy. I know people kept telling me, enjoy it, enjoy it, enjoy it. And it's, it's hard to when you get a diagnosis that changes things. But truly it all just becomes a blip in the road until the next mountain that you have to climb. So take the time to enjoy it. 

For sure. That is such a really good point. Because most people are finding out halfway through their pregnancy, something like this, you know, at the anatomy scan and you only get so much time to be pregnant with your child and you don't know what the future holds. People told me that as well. They were like, just, you know, be happy, be excited, enjoy your pregnancy, take it all in. And I'm glad that I did. I was just happy, after some losses  just to be pregnant with Hunter in general. And I had no idea that a month later after getting that diagnosis, he would be.

Born so I'm happy and no regrets I  really, enjoyed whatever time I had and, for anyone listening to it's like, you don't, this could be your, I don't know your first story or third baby. You just never know what's in store for you. So in general, I think  that's great advice to enjoy every second of it, regardless of what bumps are in the road, for sure.

Well, thank you, Melissa. This was so nice to catch up with you and to hear a little bit more about, your story and, and Caden. And, I know this will be so helpful to others who  find themselves in this, situation. 

Yeah, it was great to see you. Thank you so much, Jacqueline. And thanks for all you do for the support group, too. It's, it's huge. Like I said, how did moms do this before?  

I think about it every day. I'm so glad that,  moms like you are in the group because that's what makes it what it is. And I'm, it's like a group for me too. So it's so beneficial and  it's been great. So thank you for joining me on this ride.

 l You're welcome. 

All right. I'll talk to you soon. 

Okay. Take care. Bye. 

Thanks for tuning in. I hope you found value in this episode. If you are expecting a baby with a birth defect or you are raising a child with a birth defect, I hope this was informational and provided some support so you know that you're not alone.

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I mentioned this in last week's episode and I posted about it on social media, but I wanted to put it on your radar again this year with the motherhood intended podcast. I am leveling up year one was amazing, but I have been a one woman show. I do everything from sourcing guests, recording. creating content, answering emails, editing the show,  anything at all.

It's, it's me, it's me, me, myself and I, and this year I really want to take things to the next level. If you are looking to just grow your portfolio, maybe learn about podcasting, get more involved in the space of fertility and motherhood. I would love to give you that opportunity to be a part of this brand from the ground floor.

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Thanks for listening and be sure you're following the podcast. So new episodes will automatically pop up in your podcast app. Next week. We are going to be discussing the topic of gender disappointment. Admittedly, I don't love the phrase, but that's kind of the buzzword that people talk about when it comes to this topic.

So tune in as I interview another mom with her perspective on this topic, her experiences, and I'll chime in with my own, you won't want to miss it.

Have a great rest of your week. Stay warm this weekend if you're in a frozen tundra like I am, and I will talk to you again next week.