Ep 246: Caitlin’s Birth Story – Having a Baby with Cleft Lip and Palate

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Today Caitlin is here to share her story of having a baby with a cleft lip and palate. Usually, we talk mostly about the birth in birth story episodes of the podcast, but this episode is a little different. Caitlin reached out because despite it being relatively common, she noticed that I’d never touched upon cleft lip and palate on the podcast before and she wanted to share her experience and help others.

So what is cleft lip and palate? They are congenital conditions that occur during fetal development. An incomplete closure of the lip and/or palate (the roof of the mouth) results in a gap or opening in the affected areas. We don't know exactly what causes cleft lip and palate but fortunately it can usually be treated with surgery. Caitlin shares everything from how she found out (the way the doctor delivered the news was terrible) to the surgeries her baby girl had after birth. I’m so excited to finally be discussing this topic!

In this Episode, You’ll Learn About:

  • How she found out about the cleft lip/palate - it was terrible
  • How she felt after receiving the news
  • What she did to prepare for a baby with these challenges
  • Which kind of cleft condition her baby had
  • Why she pumped instead of breastfed
  • How she predicted that she was going to have a big baby
  • How many surgeries her baby has had

Links Mentioned in the Episode

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Dr. Nicole (00:00): This is a birth story episode where Caitlin shares her experience having a baby with a congenital condition called cleft lip and palate.

(00:15): Welcome to the All about pregnancy and birth podcast. If you're having a baby in the hospital, you are giving birth in a system that too often takes away power from women over what happens in their own bodies. I'm Dr. Nicole Calloway Rankins, a practicing board certified OBGYN, who's had the privilege of helping well over a thousand babies into this world. I've been a doctor for over 20 years, and I'm here to help you take back your power, advocate for yourself, and have the beautiful pregnancy and birth that you deserve. This podcast is for educational purposes only, and it's not a substitute for medical advice. Check out the full disclaimer at drnicolerankins.com/disclaimer. Now, let's get to it. Hello there. Welcome to another episode of the podcast. This is episode number 246. Whether this is your first time listening or you've listened before, thank you so much for spending some time with me today.

(01:11): In today's episode, we have Caitlin. Caitlin is originally from Long Island, New York, but she has spent the majority of her life in Tampa, Florida. She has a master's degree in criminal justice and a background in law enforcement. She works full-time and is a full-time mom to her sweet daughter Charlotte. She has been with her husband Peter for five years, married for the last two. Kaitlyn reached out because she wanted to share her story about cleft lip and palate because she hadn't heard it on the podcast before, which is true despite it being relatively common, which is also true. She wanted women to not feel devastated and be able to remain positive should they get an unexpected and scary diagnosis in pregnancy, and she wanted other women to know they are not alone if this happens to them. So what is cleft lip and palate? Cleft lip and palate are congenital conditions that occur during fetal development when there is an incomplete closure of the lip and or the palate.

(02:17): The palate is the roof of the mouth, and these conditions result in a gap or an opening in the affected areas. So this gap can range from a small notch to a more extensive opening that actually may extend up into the nose. These conditions can occur separately. You can have an isolated cleft lip or isolated cleft palate, or they may occur together. We don't know exactly what causes cleft lip and palate, but it happens roughly in the United States about one in 1600 to one in 2,500 live births. So it is actually very, very common. So in this episode, we're going to get into Caitlin's birth story and her experience with this, including how she found out about the cleft lip and palate. It was actually pretty terrible the way she describes it. It was just terrible. We also talk about what things were done to help her prepare for having a baby with a cleft lip and palate, of course, what her labor and birth were like, and then what things were like postpartum.

(03:24): Her daughter had to have multiple surgeries, has had to have multiple surgeries in order to correct the cleft lip and palate. Spoiler alert, she's doing very well today, but we're going to hear all of that in the episode. Now, before we get into the episode, please do check out my free birth plan class, make a birth plan the right way. A birth plan is so important to help you have the birth that you want to help you know that your doctor and hospital are on your side for the things that you want for your birth. Check out the free birth plan class@drnicolerankins.com / birth plan. It gives you questions to ask a workbook you can go through, so you can really think about the things that are important for you, and then set yourself up for success. To get that. Again, that's dr nicole rankins.com/birth plan class is totally free. Go check that out. All right, let's get into this birth story episode with Caitlin. Well, thank you so much, Caitlin, for agreeing to come onto the podcast. I'm really excited that you reached out because you are going to talk about something that is really actually pretty common, but I actually have not touched upon on the podcast. So I appreciate you coming on.

Caitlin (04:37): Thank you for having me.

Dr. Nicole (04:38): Yeah. So why don't you start off by telling us a bit about yourself and your family.

Caitlin (04:41): Sure. I'm originally from Long Island, New York, but I've lived in the Tampa, Florida area for 20 years. So basically the majority of my life, I have a master's degree in criminal justice from Florida State University, but I am a diehard gator. I worked University of Florida for undergrad, and then it just so happened that Florida State had a better program for my grad school, what I wanted to pursue. I have been working in operations and security for a company for a little over four years now, and I've been with my husband Peter for five years, married for the last two, and we have a 10 month old Charlotte.

Dr. Nicole (05:15): Okay, all. All right. Love the name Charlotte. That's a

Caitlin (05:17): Pretty name. Thank you.

Dr. Nicole (05:19): So let's start off by talking about, and actually in this case, a lot of times I want folks to talk about the birth, but this is a little bit more than that. This is about your prenatal experience, and the birth itself actually was pretty straightforward, it seemed it with some of the other things that went with it. So let's just go ahead and hop into it and start off with what was your pregnancy and prenatal care? Did you see a doctor, a midwife? How'd you feel about the care you received, that kind of thing?

Caitlin (05:47): Well, my pregnancy itself was pretty smooth up until the diagnosis, which we'll get into, but I know a lot of women are going to hate me for saying this, but I had virtually no morning sickness. I can't remember feeling nauseous at all whatsoever. In fact, I didn't really have any true symptoms of pregnancy. I didn't really feel any different. That's why I was almost concerned is something wrong, because I felt like I was supposed to be feeling some type of way. And so I actually didn't tell my immediate family that I was even pregnant until about 10 weeks or so in when I had had a couple of ultrasounds to make sure that I truly was pregnant, just because I really felt fine, a little bit of fatigue in the first trimester, but otherwise very straightforward and smooth. So it agreed with me. And then in terms of my prenatal care, I did see an OB group. I had a couple of doctors that I really liked, even some nurse practitioners that I saw that were super sweet. Obviously they weren't going to deliver my baby, but they were great to see. And then a couple of just not so great experiences. I had a couple of doctors where I just truly felt like it was just a poor experience, especially the doctor who delivered the news that this was even a possibility and a suspicion that they had. So unfortunately. Okay.

Dr. Nicole (06:59): Well, let's just get into that then. So you said at your 20 week ultrasound, something was discovered. So what was it, and tell us about that experience.

Caitlin (07:08): Yeah, so at my 20 week anatomy scan, my regular routine anatomy scan, they came in and they just ripped it off like a bandaid. We have concerns that your baby may have cleft lip and palate. I remember just feeling like a thunderbolt out of the blue, just completely devastated, shocked, confused, scared. And basically, the doctor who delivered the news went on to say, this is pretty rare. I've only seen this a couple of times, and you may notice some feeding difficulties. Your baby may need a feeding tube. Just all this really scary stuff from the get go. Again, this hasn't even been confirmed. It's just a suspicion, but just already kind of laying into me, you're going to be seeing this kind of thing. And she actually at one point said, I really hope it's not that it was the worst thing in the world, a terminal diagnosis.

(08:00): My baby wasn't going to make it something like that when it's just a pretty, I mean, not terribly uncommon birth defect, obviously very serious. But then she went on and told me a story where I delivered a baby that had this, and she told the story basically, it sounded like two hillbillies and inbreeding almost a joke. It was really, really horrible. It was terribly unprofessional. It was so insensitive, and I'll never forget it. I mean, that really stuck with me because I think she was just taken aback, how do I break this news? And she tried to almost make a joke or make light of it, but it actually just was completely tone deaf and extremely difficult for me to hear,

Dr. Nicole (08:41): Oh my God, see my face. But my mouth has been wide open while she's been talking. That is awful.

Caitlin (08:47): Yeah. So when I tell you I had a poor experience with one of the doctors. Yes. I'll never forget that.

Dr. Nicole (08:53): Oh my gosh. Okay. I don't even, okay. I don't even know where to start with this. So this was the same time that it was brought up as a suspicion? Yes. And she goes

Caitlin (09:06): Through in the same visit.

Dr. Nicole (09:09): Okay. And then, okay. Oh my God, was she younger? Was she,

Caitlin (09:15): No, she had been in practice, I believe she said at least 20 years she's been doing this. She basically said, I've delivered two babies with this condition in my 20 plus years. I can't remember the exact number, but no, she's been in practice for a while. I think she just didn't know what to say and tried to make, she tried to tell what she felt like was a funny story, but it wasn't funny at all.

Dr. Nicole (09:35): At all. Yeah. Yeah. Oh my gosh. Well, I guess I should say, did you even know what cleft lip and palette

Caitlin (09:42): Was? No. And I'll get into that. So I didn't really know what it was at all. I mean, I had a general idea. I feel like everyone might know somebody, whether in their grade school class or that had it, whether they had a little bit of a scar. You could tell on their upper lip, maybe they had it. I feel like everybody knows someone. So I had a general idea, but I really didn't know too much about it, and she didn't really bother to explain it. At that point. I didn't really get more concrete information until I saw a maternal field medicine specialist. And so that was the next step. They referred me to an MFN specialist who could do a 3D ultrasound and confirm. So they actually did a 3D ultrasound of the face, and they confirmed that, yes, my daughter was going to have this.

(10:22): And again, I don't think I knew her gender at this point, but my baby was going to have this cleft lip and palette. And how it was explained to me was they said that in utero, the face forms, it's pretty early on. I believe it's in the first 10 weeks. I can't remember exactly when, but the way they described it was two halves of the face come together and basically something went wrong. It didn't fuse together, and it left an open cavity. And the way they described it was they told me, it's not your fault. This just happens. And for somebody who's extremely type, a very control freak said, how can this just happen? She was planned. I was on prenatals for months. I didn't touch a drop of alcohol while trying. I did everything. I checked all the boxes, the guilt that, what did I do, trying to think back, what could I have done? And they basically just said, look, it's not you. This just happened, and nobody really knows why. Right,

Dr. Nicole (11:18): Right. I'm just still like, that's that very basic explanation of the fit. We all learned that. So it's just mortifying that the first doctor didn't tell you that was your husband with you at the time. He

Caitlin (11:31): Was, and thank God for that, because he was just my beacon of strength, because I held it together until I walked out of the office, and then I just fell apart, just hysterically crying, processing that. And he just held me and said it would be okay. And he was just very optimistic about the whole thing, and he remained that way through the whole, he is my rock. But yeah, it was great to have him there for

Dr. Nicole (11:56): Support. That's wonderful. And then how much time passed in between that visit and when you saw MFM?

Caitlin (12:04): Oh, gosh. I want to say at least a month or two. It wasn't right away. I mean relatively quick, relatively quick. But it wasn't immediately after. There was a wait period where I was just processing and I said, you know what? There's a chance. It's not that, because I'll go back and say that the reason they suspected it is they saw the faintest shadow on the upper lip during the anatomy scan, which I thought that was great technology, that they were able to pick that up. And I am very thankful that they caught it when they did, because that allowed me to prepare.

Dr. Nicole (12:33): Sure, sure. Okay. I mean, yes, it was a month, but a month can feel like, oh,

Caitlin (12:41): Yeah,

Dr. Nicole (12:41): Forever. When you're trying to get a diagnosis about something. What were you doing in that period of time?

Caitlin (12:50): Oh, everything. So I was researching, I was trying to learn as much as I could about it. I basically just operated like, yes, this is happening. It'll be great news if it's not that, but let me just go ahead and assume that my baby will have this condition that I really don't know a whole lot about. So I did do some research. I actually reached out to someone, an acquaintance that I knew from high school, a Facebook friend. And the reason that I reached out to her is because she was very vocal about her child who had, I think was born about a year or two prior having this condition. So I knew somebody personally who just had a baby with this condition, and I reached out to her and she posted pictures before the surgery. She was very open about her baby. And so I reached out and she was just a big support for me through this and said, this is suspected. What do I do? And so she was great. And then I also did research into surgeons and everything, and I think I really got more into that once it was confirmed, after seeing the MFM specialist, then I actually did go ahead and meet with a surgeon who was excellent.

Dr. Nicole (13:51): Gotcha. So then how did you feel then after when you met with the MFM specialist? Did you feel better? Did you feel like, what were your thoughts then?

Caitlin (14:01): Yes. I mean, well, it's hard because on the one hand, part of me was still holding out hope that she wasn't going to have that. But then it was like, okay, this is confirmed. But it gave me, at least, it wasn't necessarily an unknown. I knew that she was going to have this condition. Now, for those who don't know, there are multiple types. There's bilateral, which is two sides of the mouth. There's unilateral one side. I think they said the left side is more common. My daughter had a right unilateral, so hers was on her right side. It can be the lip, it can be the palate, it can be both. So my daughter's is both. It extends from her lip through her gum line, all the way back through her palette. So the roof of her mouth with just a complete open cavity. Now, they couldn't tell the extent of that on ultrasound. So in a sense that there was still an element of unknown, like, yes, she's going to see it. We see that it's on the right side, but we don't know how far into the palate it goes. It looked like it was going to touch the palate, but they couldn't give me real answers on that. It was more of a wait and see when she's born. And I had to find peace with that. And that was hard.

Dr. Nicole (15:08): Yeah, that can be hard. My daughter had an intestinal malformation that was diagnosed on ultrasound, and it's very like, well, this is kind of what we think might happen, and you just have to wait and kind of see how things go. That's hard. Understand that. Yeah. So then did the MFM specialist then connect you with a surgeon? How did that process work from there?

Caitlin (15:33): They did give me a name for a surgeon. I actually ended up going with someone that, my mom works at a surgery center, and so she had colleagues who recommended someone that was well known in this area, in this particular field. And it's funny because without even knowing it, that other friend of mine had also used that same doctor for her baby, and he was just excellent. He had traveled to third world countries to repair faces of children who had never gotten the procedure done. So they were like 6, 7, 8 years old, and they had never gotten it and just doing work to help them. So he was very experienced. He'd been doing it for years, and it was just a night and day difference with how he treated me just immediately saying, this isn't your fault. She's going to be okay. And just very kind and telling me exactly what to expect. And I met with him while I was still pregnant. So that was great. And then obviously, he even came to the hospital when my baby was born to take a look at her, too.

Dr. Nicole (16:30): That just makes such a big difference. And it's great that you were able to connect with someone who you felt like was really there to support you and help educate. You didn't help get through things. So then did they tell you then that, did it change where you would have to deliver, where you would have to give

Caitlin (16:51): Birth? No. So he had privileges there, and so he worked closely with that hospital. So no, no, it worked out

Dr. Nicole (16:58): Okay. Because in some instances, if it's depending on the area, there may not be pediatric oral surgeons who could fix it. So that's great that you didn't have to change or anything like that. So then what was the remainder of your prenatal care?

Caitlin (17:16): So basically it was just, at that point, it was just smooth. I got more into like, well, what do I want to do for my actual birth? So there were certain things that I wanted. I kind of wanted an unmedicated birth, but I wasn't a hundred percent into it. I said, you know what? If I need to get an epidural, it's not the end of the world. Let me just try. And the reason I was even considering it is I have a family history of very quick labor. So again, as I progressed at this point, I want to say I was maybe around six or seven months when I'm, I'm trying to think of exactly when I got the news. So it was, again, at this point, it was approaching the tail end of my pregnancy. So now I really started focusing on the natural birth. So yeah, just going into that, let me prepare. Let me figure out how to breathe and all of that.

Dr. Nicole (18:05): Okay. Okay. Did you do any childbirth education, or what did you do?

Caitlin (18:09): So anyone who knows me knows that I'm a reader. I'm a bookworm. I'm in a ladies book club in my neighborhood. I have a stack of four books on my nightstand at any given time. And so I read probably close to 10 books on the subject. And then I listened to podcasts. Yours was the main one that I listened to. I actually was referred, a friend showed me your podcast, and I went back to episode one and binged every single episode. So yes, I already feel like I'm talking to an old friend just because I know your voice so well,

Dr. Nicole (18:41): Love it, love it, love it. And I love the fact that you also, you like to read books also. So you read books, you should find something that works for you. So that is absolutely excellent. So you said that you were going to do maybe epidural. You were open to it. Was there anything else that you particularly wanted for your birth?

Caitlin (19:02): Yeah, so I definitely wanted the skin to skin, the delayed cord clamping. Of course, I had questions about, now that my baby's going to be born with cleft lip and palate, is anything going to be different? And they basically just said they'd probably have the NICU staff take a look at her, but maybe not. It may not be necessary. They were like, maybe just, we'll have them on standby to make sure her airway and everything like that, but they said otherwise it's going to be the exact same birth. So there was really no difference

Dr. Nicole (19:28): There. And I'm guessing they did prepare you, at least for the feeding, maybe the feeding was going to be different.

Caitlin (19:34): Yes. So that was disappointing because I definitely wanted to breastfeed. I intended on breastfeeding, and the way the surgeon described it to me was, look, the lactation consultants are going to tell you that you can breastfeed. I'm going to tell you you can't. And he was just very honest about it. He's like, if it was just her lip, you probably would be able to, but because it's her palate, it's almost like even if she has that sucking reflex, which she did, she doesn't have the equipment, it's like he actually described it as imagine trying to suck through a straw that has a hole in it. You just can't do it. So I ended up pumping. I pumped exclusively for four months. I intended to go longer. My goal was six. But with getting back to work, it became hard. I started getting pressured to start traveling again, and it just became a little bit difficult. But I did want her to benefit from my breast milk, so I did.

Dr. Nicole (20:23): Gotcha, gotcha, gotcha. Okay. So was there anything that you were particularly afraid or worried about for giving birth?

Caitlin (20:31): Oh my gosh. Well, not so much the pain. I actually have a pretty high pain tolerance. I actually briefly was a law enforcement officer. I was a police officer, and I had been through police training, I'd been through taser, pepper spray, multiple things. So yeah, so I wasn't really concerned about that. It was more like, I guess the pushing, because I thought my baby was going to be on the bigger side. She was measuring big. I was eight pounds, 10 ounces. My husband was eight and changed. And I remember hearing that there's sometimes a genetic component to that. She ended up being eight too. I'm on the more slender build side. So I was just like, oh, is this going to be tough? How am I going to do that? It was more pushing. And then with the epidural, my main reason that I was on the fence about getting one was, am I going to be able to feel how to push if I can't feel? And that's what kind of also was like, well, lemme try without it and see how it goes. Gotcha.

Dr. Nicole (21:22): So let's talk about how did your labor in birth

Caitlin (21:24): Go? I was one of those people who was scheduled to be induced, but my baby had other plans and came was like, I'm not getting evicted. Here I am, because I was five days overdue. I was scheduled to be induced, and I was basically, it was a Friday morning that I would've been scheduled to be induced Friday, March 3rd, and I went on Thursday. They said, go ahead and come in on Thursday night and we'll start the process. And then they ended up calling me and saying, look, we don't have beds available. We'll call you when to come in on Thursday night to start the process. And so my mom was my doula, and I'm going to use air quotes because she's not a doula, she is not certified, but she was my support person. She's like, I'll be your doula. So she's a nurse. She's been a medical professional for years.

(22:09): She's had four babies. I'm like, sure. She knows what she's doing. So between her and my husband, I had a really good support team. She was so excited that she had already headed over to the hospital early, and I told her Mom, they're supposed to call us. And she was already there. She had her cup of coffee and she was like, well, maybe it's ready. Let's just do it. And then we drove out there. Anyway, that was a bad idea. It was 35 minutes away, and we drove out there. Anyway, she was so excited. She was already there, and they turned us away. They said, we don't have a bed for you. We will call you. It's going to be several hours. And so we went home. They were like,

Dr. Nicole (22:44): We told you on the phone, girl, we

Caitlin (22:46): Don't have a bed. I know I wanted to kill my mom. And so they sent us home and we were like, okay, let's just get some rest. At this point, it's probably like nine 30 at night. And about three hours later, just so just after midnight, I felt my first contraction. So while waiting for them to call me, I actually went into active labor. And I remember feeling like, all right, I think this is it. It's kind of a painful cramp. It ramped up pretty quickly, because I remember after maybe about an hour or so, I was like, okay, they're coming in kind of quick. Let me time these. At that point, it was about three to four minutes apart pretty quick. I labored at home for two hours, and I didn't want to get there too early, but I was worried about the fast labor.

(23:32): When I tell you my mom almost had myself and my brother in the car, it was bad. So I said, you know what? It's a 35 minute drive. Let's just go ahead and head over. I'm feeling like these are coming in pretty quick. And then when I told them I'm back, I'm in active labor now, so please admit me as I'm signing forms through contractions. And I remember at triage, they said, you've only been in labor for two hours. And she just gave me this look like, why are you here? And then she checked me and she was like, oh, I'll be damned. You're at a four. And she said, okay. And they went ahead and admitted me right away to labor and delivery. At that point, it progressed pretty nicely. I did end up getting an epidural. I remember thinking to myself, this isn't too bad. I probably could go without it. But you know what? It was March. It was pollen season. I was miserable. I was so stuffed up, and I remember thinking, I can't breathe, period. How am I going to breathe through the

Dr. Nicole (24:30): Distraction?

Caitlin (24:31): I need some help. And so I got the epidural. At that point, I was six centimeters when I got the epidural, and at that point, it escalated pretty quickly. My hardest thing was pushing. I pushed for an hour and a half, and it was exactly what

Dr. Nicole (24:47): I thought That that bad for your first baby and an eight pound baby?

Caitlin (24:51): That's not bad at all. Okay, thank you. I was like, oh, that was rough. Well, I will tell you that I took me a while to get the hang of it, even though I had an epidural. They let me hang from a squat bar and to try to help bring the baby down. And then I pushed in different positions on my side mostly, but it took me a while to get the hang of it. I remember doing the J breathing that I had read about breathing through it, and I can tell you that the only way I had made any real progress was what they call purple pushing, where you hold your breath and bear down as hard as you can. And I remember the nurse telling me when I told you, you were doing a good job before, that was a white lie. That was a real push. She told me, she's like, keep doing what you're doing by the end of it. Yep. No, and by the end of it, I had black and blue on my face. I mean, I had a second degree tear, but honestly, while they were stitching me up, my beautiful baby was on my chest. It was a great moment. So I didn't even notice, honestly, I was just so in love with her.

Dr. Nicole (25:57): Awesome, awesome. They did do skin to skin. They

Caitlin (25:59): Did. They immediately put her on my chest. Yes. And they did. They checked on her. They checked it while she was on my chest, so it didn't interrupt anything, and I was so worried about everything. I got it. Like I said, from the ultrasound, the 3D ultrasound, I did already have an idea of what her face would look like. So it didn't come as a shock. I will say that if I wasn't prepared, it would've been hard. It would've been very hard because it took me time to process the guilt process that it wasn't me or anything I did to prepare for it, because if I wasn't expecting it, it would've been hard. But because I was like, oh my gosh, my beautiful baby's here. That's good. It was great, and I loved her.

Dr. Nicole (26:38): That's where it can be helpful to be prepared. I can understand how that would be a shock if you didn't know that it was coming. And I should add, well, a couple questions. Did you want to be induced or had they recommended that, or was it just like, Hey, you're five days past your due date, or

Caitlin (26:54): No. So this OB group made me put a date on the calendar, said, if you go past your due date, we have to have a date on the calendar. And I said, okay. Well, I wanted to give myself time to go into labor. Naturally, that was important to me. So I said, okay, well put me down for the latest date you're comfortable with, and we'll go for that. And that was the day she came.

Dr. Nicole (27:11): Okay. Okay. And then you felt like the nurses, and I assume in the doctor, whoever was on call, you felt good about the care you received, or how did you feel about the care you received in the hospital? Oh,

Caitlin (27:23): Yes. Oh my gosh. The hospital staff was amazing, I will say yes. And the woman, the doctor who delivered my baby was absolutely great. I had never met her before that day. I had not had her in the office, but she did a fantastic job, and she did a great job stitching me up. And then the nurses, they were all amazing. Awesome. They were very, very kind and sweet, and yeah, it was great. Honestly, that was a perfect experience for me.

Dr. Nicole (27:47): Good, good, good, good, good. So then what happened with your daughter after birth? Let's talk about that.

Caitlin (27:52): Yeah, so she had four surgeries between age three months and six months. So it was a lot.

Dr. Nicole (27:59): So she didn't have the first surgery until she was three months.

Caitlin (28:02): Three months. So in terms of her feeding, I will say, yep, Dr. Brown's bottles is what I use. Dr. Brown's special feeder bottles, and she did fine with it. So they did check in the hospital. They made sure that everything was okay with her eating. She was fine, so she was able to drink from that particular bottle, she was able to suck, and she had the reflux and everything like that. There wasn't an issue with it. So yeah, she was fine. She was completely fine with feeding it, really, it wasn't an issue at all.

Dr. Nicole (28:33): Could you see it in her mouth when you looked in? Could you see the opening? Oh, yeah.

Caitlin (28:37): Okay. Oh, yeah. Yeah. You could see if she opened her mouth and to cry or anything. You could see it going all the way back. Obviously, it was just an open cavity on her face, right? Yeah. I mean, yeah, it was pretty, yeah, it was out

Dr. Nicole (28:49): There. Did it freak you out at all?

Caitlin (28:52): No. No, no. Yeah, because I think at that point, because I had been so prepared and I had read about it and I had looked at images and I had processed it, I will say that I did go through a grieving process, right? Because she was my first baby. You have this image in your head of a quote, perfect baby. This is what I envisioned my baby to look like. And she wasn't going to look like that, and I had to make peace with that. And so that had already come and gone. By the time she was on my chest, I was just like, wow, this is the most beautiful thing I've ever seen. It was because she was mine. She was mine. And that was the amazing to meet the little baby that had been kicking inside me for so long, and it was just nothing but love. So it wasn't shocking. It wasn't upsetting. I mean, if anything, I was just looking forward to the surgeries, but also not because we'll get into that, but that was very, very tough for me, but worse for me than her. Gotcha.

Dr. Nicole (29:46): Were there ever any difficulties or concerns if you ever took her out in public? Did people stare or did people ask questions or anything like that? Yeah,

Caitlin (29:55): So I would say in the beginning, honestly, the first three months, I didn't take her out very much. I'm trying to think. We were mostly home trying to get the hang of everything. We had family visiting the house. I took her around the neighborhood on walks and stuff. But I feel like honestly, the first few months, I didn't really take her out

Dr. Nicole (30:15): Much. We didn't take our kids out either. I mean, either way,

Caitlin (30:19): Just because was don't think so in the very beginning. Yeah, so not a lot of people saw. I will say that when I did share photos of her, I did it from her quote, good side. That was something that I did want to keep private a little bit more personal. I said, you know what? In the age of social media, do I want my daughter to be like, mom, why did you share all these photos of me with everyone when I was before my surgery? So just out of respect for her, I said, let me keep that private and just share with family and that kind of thing.

Dr. Nicole (30:49): So then you said she's had four surgeries?

Caitlin (30:52): Yes.

Dr. Nicole (30:52): Okay. So how have those gone? Why four surgeries? How much time in the hospital? I'm curious about all that.

Caitlin (31:01): Yeah, so the first step was repairing the lip, and that was a three step process. So basically the first thing they did was they took an impression of her mouth and she had to be completely knocked out for that. They just did a first, almost like a dental impression. Then the second thing they did was they put in an appliance, almost like a retainer, and what that did was it prepared her mouth, it closed her gum line to just bring it together and make it a little bit easier for the surgery. And she had to wear that for two weeks. It was almost like baby braces. That's what it looked like. And then they went ahead and repaired her lip, and this was about the three month mark, maybe a little past three months. And they repaired her lip and her nose. So she sometimes with a cleft lip will usually, oftentimes you get a flattened nostril.

(31:47): So her nose was repaired as well, and she had to wear a nasal retainer for months after that to kind of keep the shape. So every night, so first it was all the time, and then it was just nights for a while. And then the last step was the pallet repair. And that was when she was six months old. And that's when they did go ahead and close the gap, just all that set open cavity in the roof of her mouth. And that's completely repaired now. So now when she opens her mouth, you don't see anything. It's just like tissue. So it's gone. It's all

Dr. Nicole (32:16): Fixed. And did they tell you in the beginning that they anticipated it was going to be a multi-step process when you prepared for that?

Caitlin (32:23): Yep. I was prepared that I was going to be a multi-step process. The surgeon went through all of that with me. Gotcha,

Dr. Nicole (32:28): Gotcha. And then does she have to have any more surgeries?

Caitlin (32:31): So not at this time. She is all done in the sense that everything has been fixed and repaired, but now it's a matter of as she grows, her face can continue to mature and change. So they said they might do a touchup before she goes to school about kindergarten, first grade, if she needs a touchup. And then adolescent, they said she might want, I don't want to say a nose job, but kind of when she's a little older, just because it might, as her face is repairing and changing and it might need just more touchups. But she's done for the time being. Okay.

Dr. Nicole (33:02): And her feeding's fine, and all of the milestones and things were good.

Caitlin (33:06): Oh, yeah, no. So I guess I'll backtrack. So this condition is sometimes related to another genetic abnormality, and so they did recommend we do genetic testing, which we did. And thankfully there was nothing else wrong. So it was just an isolated cleft lip and palate. But she was perfectly healthy otherwise so. So that was good.

Dr. Nicole (33:28): Awesome. Perfect. So it sounds like things went as, as well as could be expected. No big major hurdles or anything?

Caitlin (33:36): No, I mean, it definitely was hard. I will say watching them take my three month old to the operating room was extremely difficult. I just every time had a box of tissues, and it didn't really get easier, even though it was a four step every time. It was hard. And then the recovery was hard because obviously, well, that was when feeding was an issue. It's her mouth, so her mouth was in pain. When you're like, how much oxycodone do I need to give my infant, my tiny baby? It's hard. It's just hard in that much pain. It's very, very, very difficult. So the recovery was rough, but it was usually only, I'd say about a week or so. But yeah, there was definitely force feeding with a squirt bottle. You're just trying to get as much as you can get because she's not going to willingly take the bottle, but she's got to eat. So that was hard.

Dr. Nicole (34:24): Did she have to stay in the hospital after her surgeries, or was she staying home?

Caitlin (34:28): Yeah, each time she had to stay, but it was only one night. So they watched her for one night, and basically what they said was they had to ensure that she could take half her bottle, and if she took half, even if it's not willingly, as long as she was able to get down half her normal feeding, they would discharge us. So, so they just kind of monitored and make sure she could eat.

Dr. Nicole (34:48): And then they're like, you got it, parents.

Caitlin (34:51): Yep. Here we go. And then, yeah. So definitely my work. My company was great too because they gave me some time off. I work full time and I've been working full time this whole time, but they gave me some time off to help her with her recovery. It was hard. It was very, very hard to focus on anything else.

Dr. Nicole (35:08): I can imagine, especially having to essentially almost force feed your child. Yes.

Caitlin (35:14): Oh gosh, yes. If anyone's ever had to do that. It is painful. It is very painful.

Dr. Nicole (35:19): And knowing that they're in pain and there's not really a whole lot. I mean, you do what you can, but I'm sure it's a lot.

Caitlin (35:24): Oh, yeah. And everyone just kept telling me over and over again, I heard she's not going to remember any of this,

Dr. Nicole (35:29): Which is true.

Caitlin (35:30): Which is true. I know, right? I know. There was like, it's harder on you. I'm like, yeah, that's probably true. But still.

Dr. Nicole (35:38): So when you look back, is there anything that you wish you would have known about things?

Caitlin (35:45): That's a good question. I mean, no, I feel like they prepared me as much as they could have, especially the surgeon. Like I said, meeting with him beforehand was great. Now the only questions going forward is as we follow her into adolescence, what's going to happen next? Because again, with the palette, hearing speech, the way her teeth come in, all of that is in question now because, and it's a wait and see. It's all across the board. There are some severe cases. There are some not so severe cases. It's really up in the air. So I guess at this point, it's more like it'd be nice to know and predict how is this going to be. I'm worried that, of course, with her in school, you mentioned, oh, getting looks, I get looks now. I mean, she's a beautiful baby. I can share pictures and stuff, but she has a little bit of a scar, and it is what it is. And they said that it'll fade in time, but I've gotten mostly toddlers will be like uhoh boob boo looking at her face, and they don't know any better, but it's like, oh, at some point that's going to register with my daughter. She's too young to understand, but at some point she is going to hear these comments and I'm already worried about that. But it's taking it one day at a time and not getting too worried about the future and what's going to happen, but just as things kind of arise. Gotcha,

Dr. Nicole (37:06): Gotcha. So then you just have to keep a close eye. And I mean, I guess, do they do speech therapy evaluations? I mean, you're probably not even there yet, or is that the things that are coming?

Caitlin (37:17): Yeah. Yep. So we did meet with a whole team of people, and so they basically said they're going to follow her annually. So once a year they're going to, at least once a year, they're going to meet with her and assess. They did notice she has some fluid in her ears, which they're going to have to watch. They said that that's pretty normal, but it's something that they're just going to have to watch to see because that could affect her hearing and her speech and the way her teeth are coming in and everything. So orthodontist, they're going to be following her, but it's more like once a year she's going to go through a full kind of battery of tests and evaluation. Got it. And they'll be working with her as she grows.

Dr. Nicole (37:48): Got it. Got it, got it. Okay. Has this influenced your thoughts about having any more children?

Caitlin (37:53): Well, I always planned on multiple, so that has not changed. Okay. That has not changed. Nope. I definitely want more, just not yet. Gotcha. Not yet.

Dr. Nicole (38:02): Just give me a minute. Yes. Okay. Yes.

Caitlin (38:05): Yeah, yeah.

Dr. Nicole (38:08): So then as we wrap up, what would be your favorite piece of advice that you would give to an expected mom or expected family?

Caitlin (38:15): I would say to, I mean, this may not be the best advice, but expect the unexpected. You can do everything right on paper. You can check all the boxes, and sometimes life just throws you a curve ball, and you have to know when to accept what you can't control and make the best of it. I will say that my faith really got me through this time. It was a time where some people may turn away and say, God, why would you do this to me? And instead, I went closer to him and said, God, I trust the plan that you have for my family. I trust what you, I put my faith in you help me get through this dark time. And I really, really leaned into that. So I would just say, don't let it steal your joy to anyone out there who is dealing with unexpected and scary diagnoses in pregnancy, don't let it steal your joy. It's going to be okay. And babies are a blessing.

Dr. Nicole (39:06): Yeah, absolutely. Absolutely. I love that. So where can women connect with you? You can say nowhere if you want.

Caitlin (39:12): No, honestly, the main reason I came on this podcast was to share my story. But like you said, it's really Charlotte's story. And just to be a listening ear, if there's anybody who does want to reach out to me, if they're going through something similar, whether or not with cleft lip and palate. But yeah, again, if you just got an unexpected and scary diagnosis and you want to talk, I'm here. I'm on Instagram at Katie Brady 10, which is C-A-I-T-Y-B-R-A-D-Y 10, or Facebook, Caitlin Brady. You can find me.

Dr. Nicole (39:41): Okay, perfect. And we will link that in the show notes. Well, thank you so much for coming onto the podcast and sharing your story. This is really, really important for people to hear and talk about, and I'm so glad you reached

Caitlin (39:54): Out. Thank you so much. I'm so glad you're having me.

Dr. Nicole (40:03): Wasn't that a great episode? I really appreciate Caitlin coming on to share her story about having a baby with a cleft lip and palate. Now, after every episode when I have a guest on, I do something called Dr. Nicole's notes where I talk about my top takeaways from the conversation. Here are my Dr. Nicole's notes from my conversation with Caitlin. Number one, most congenital conditions are not genetic. A lot of people think, oh my goodness, this didn't run in my family. Why did this happen? When in actuality, most of these things do not run in families. Yes, having something does increase the chances of having it again, but most often it's going to be something that's spontaneous and not related to a genetic condition. Second thing I want to tell you is that you can do everything and things can still happen. Caitlin did everything right.

(40:57): She prepared for pregnancy, she planned it. She was taking care of herself, all of those things, and she still had this thing happen. The reality is that life is just unfair like that sometimes, that you can do everything and things still happen. Now, that doesn't mean that you can't overcome those things or that you can't manage those things. In fact, you can do that quite well as Caitlin demonstrated. But please don't beat yourself up because the reality is that life just sometimes lifes okay, and you do everything right and things will still unfortunately happen. That can be during your pregnancy, that can be during your labor, that can be during your birth, that can be during your life.

(41:47): All right. Next thing, ultrasound and genetic testing are great to help you see your baby, help you know that everything is going well with your baby. But one of the great things about ultrasound and genetic testing is that they can really help you be prepared if something is discovered. Some conditions may require that you need to give birth at a different hospital that has more resources to accommodate your baby's needs. Not all hospitals have the same level of resources to take care of babies that have concerns after birth. It may mean that you're able to see specialists during pregnancy, and you can better prepare yourself for what to expect when you have a baby that's going to be born with some conditions. So those are some of the things and reasons why ultrasound and genetic testing can be really, really helpful to help plan appropriately if we notice any things that pop up during those tests and during those exams.

(42:49): And then the last thing I want to say is about social media. I have this love hate relationship with social media where it's great to reach out to people and to connect to people, but can also be a rabbit hole, that terrible information and all of those things, and just a place where people can have depression, anxiety, and comparisonitis and all of those things. But it really can be a great place to connect with other people who are going through similar things as you, and that can be really, really helpful and help you not feel so alone. So just make sure you're using social media in a way that is intentional, that helps you to connect to people that may be going through things that are similar to you. It may help you experience gratitude. Maybe you realize that things aren't as bad as you realize.

(43:41): So just be intentional about the way you use social media and do so in a way that actually enhances your life and not detracts from your life. All right. So there you have it. Be sure to subscribe to the podcast wherever you are listening to me right now, leave a review in Apple Podcast. I really appreciate you doing that. There it helps other women to find the show, helps the show to grow. And do check out my free birth plan class, make a birth plan the right way. You can check it out at drnicolerankins.com/birthplan. I promise you, you will not regret it. So that's it for this episode. Do come on back next week and remember that you deserve a beautiful pregnancy and birth.