Listen in as a mother of two shares her powerful story alongside her children's doctor of the unexpected diagnosis of cleft lip and palate. April and Dr. David Morris are hoping to help families dealing with this diagnosis.
Bill Klaproth (Host): So, April for someone listening to this, they’re probably either – they just found out their child is going to have a cleft lip or palate or maybe it was just born with that and are just searching for any information possible; so I’m just trying to get your feelings as a mom as I ask these questions; kind of your journey through this and through that, I’m sure someone will find comfort. So, just wanted to bring that up. So, April we are not going to use your last name, I know that so. April, how did you discover Evan had a cleft lip and palate?
April Hornbuckle (Guest): We first discovered at my 20-week ultrasound that Evan was going to be born with a cleft lip and palate. Our first daughter who is almost 6 years old, Terrilyn was also a cleft lip and palate baby, so we knew with the ultrasound with Evan to sort of be on alert and look for that. So, at our 20-week ultrasound they brought up his face and having experienced it before; clear as day, my husband and I could see the cleft on Evan in the ultrasound.
Host: And what were your emotions at that point?
April: Our emotions were thrown upside down. The chances of us having a second child with a cleft lip and palate was two to five percent because for us, we did not have any family background of any clefting in our families. We had genetic testing done and nothing came back. So, we had just gone into the pregnancy which our son was quite a miracle to say the least, so very happy for that pregnancy. And we were very taken aback by the results of the ultrasound. We really did not expect it, thinking that he would not have the cleft.
Host: Wow, that is rare to have that twice in a family. So, for a potential parent listening to this; for Terrilyn, your first child, when you first found out; how did you prepare yourself for birth knowing that your child was going to have a cleft lip and palate?
April: The benefit for my husband and I was we were able to see that in an ultrasound and we were able to prepare. For us, we went through measures of with our first child, reaching out to a couple of different hospitals to meet with them, see what we needed to be prepared for. Shriner’s Hospital for Children in Chicago was the place for us where we ultimately decided where we were going to go for so many reasons. And with our son, we knew what to expect, but at the same time, we also knew that every cleft journey was different, every cleft patient was different. So, once again, we had to expect the worst, pray for the best and I will say both of our children’s journeys have been quite different.
Host: Okay, so, because of the clefting, is there a difference in birth? Do you have to watch out for anything through birth because of that? Does that change the parameters of giving birth at all? Are there special precautions that have to be taken?
April: For us with the cleft children; I was high-risk. They do have to throughout the pregnancy monitor the size of the baby just to make sure that the baby continues to grow. Both of our kids were very healthy otherwise. They just had the clefts. What we did in order to prepare also was we tried to prepare our hospitals locally for the birth of our children, making sure that the bottles they needed were available at the hospital. We had even gone through with our first child preparing them for feeding that we were guided by Shriner’s on the best practices for feeding our babies. I will tell you that some of the best advice we received from Shriner’s was us being able to do it by ourselves and not expecting the nurses at the hospitals to be feeding our baby all the times, for us to take that step so the baby gets comfortable with us. That was the best advice. Again, both of our children’s journeys were very different. Terrilyn did not go into a NICU or need any type of feeding tube. We fed her with a bottle immediately. She did have a specialized squeeze bottle, but she adapted to that very well. She was unable to suck. Evan his journey was different. He had some low oxygen levels, so he had to go into a NICU. But we were able to – the day after, feed him with a regular bottle and just a special Pigeon nipple. So, his feeding was very different. He was able to suck a little bit more. But we did, we took that advice. We ran with it. We were able to make better connections with our children by being able to do more with them, which made it great.
Host: So, what advice for a parent listening to this, obviously, there is feeding issues and I want to talk about that a little bit more in depth, but first seeing your baby with this cleft lip and palate; any advice for parents just visually when you first see the child?
April: My advice for parents, especially when they are seeing their child for the first time and not knowing that they have a cleft child; I love my cleft babies’ smiles and for parents who don’t expect that to happen; my biggest piece of advice and what I tell a lot of families as I continue to help them in ways that I can is this is definitely something that can be fixed. You will have your challenges. There are surgeries involved. There are some feeding challenges. There may be some speech challenges. There may not be any of those challenges. But this is definitely something that can be managed and the support I will say, the support, guidance, education that we have received from Shriner’s Hospital for Children in Chicago and their cleft lip and palate team has been by far the biggest support to help us get through these journeys.
Host: Wow. Powerful. So, you were talking about other challenges. Can you briefly share with us the challenges of having a cleft baby, especially after birth and as an infant? The special things you have to do? I know you mentioned feeding as well, what about care of the area? Maybe you can share with parents listening what you have to go through with a baby with a cleft lip and palate, immediately after birth and until that first repair comes months later.
April: Well, when your child is first born, you need to get used to the different feeding that you have to do with them. Again, for us, we were able to use a normal bottle with Evan. It was just a different nipple. So, the feeding wasn’t as difficult. I will say the feeding probably is the bigger challenge for most families and it’s just getting used to it, because the other thing that is a challenge is our cleft babies usually cannot suck or hold a pacifier. So, I will tell you, one of the things that we struggled with initially as being new parents and being parents again with another cleft child is why is he crying, why is she crying. Why can’t we help sooth them? Not being able to just pop that pacifier in your baby’s mouth and just letting them rest and lay there; it is a different challenge. It’s not as easy just to do that. So, there’s challenges like that.
Then when you are preparing for the surgery; the one thing you take into account and you start to think about is you have finally gotten into a routine with your baby’s feeding and getting comfortable with their bottle and your child goes in for their first lip repair and comes out with stitches where they cannot touch their mouths, they cannot put anything in their mouths, they cannot have their bottles, they are being syringe fed. They have arm restraints on which we call our no-nos. And they are then sort of taken – all of that is taken away from them. And that’s what’s difficult as a parent. The difficulty in seeing your child get comfortable after surgery, the difficulty in trying to syringe feed and keep up with them because they are hungry, and they are thirsty, and you have to get through giving them as much liquid as you can with the syringes. But I will tell you, my husband is very – a big researcher and what we did was, we were able to actually take the syringe that the hospital provided us and place it in what was the squeeze bottle we used for Terrilyn. Which number one made the feeding for my husband and I so much easier and also, made it a little bit easier for the baby to feed.
Host: Okay. A couple of more thoughts before we get to you Dr. Morris. Thank you for hanging out with us. What about preparing your family and friends for the baby too, when they see the baby for the first time? What do you have to do to prepare them? I’m sure they have a lot of questions and how they are going to react. Any thoughts about that?
April: First of all, I absolutely love this question. And thank you very much for asking it. So, for us, in preparing our family, that was a big part of being prepared for the birth of our child. And once again, I am going to loop back in the feedback that we received from Shriner’s. We were told from the very beginning be very open about your story. Be very open about your child being born with a cleft. Be very educating to others and to your child so that they are comfortable in telling their story. For us, we immediately once we found out; we were telling people our child was going to be born with a cleft. We were educating people that they are going to come out, they are going to look different, they will be taken care of and the best part about all of it was we knew where we were going to get this taken care of and I’ll be honest, I hade absolutely no doubts in the work that Dr. Morris was going to do on not only Terrilyn, but also Evan having been through it before. And what we tell people and what we have shared with our children is for them, they are blessed with a special trademark from God and they will always be able to share that trademark with everybody. And who can honestly say that they have had two different smiles and for Evan’s sake; he has had about three different smiles. And the other thing that I really made sure was I let people know. His pictures, her pictures, they will be on Facebook. We are not hiding this. I truly, truly, truly believe that a family who is coming into this situation has to be very open about their cleft baby. Number one it is going to build the confidence in the child and I see it in our almost six-year-old daughter. And it also two, just helps with people accepting it. Because again, it is something that is very shocking to others. But again, it’s fixable. And every day I count my blessings that this is the journey that we’ve been put on versus other journeys we could have been put on.
Host: Amazing. You are an amazing woman. You are bringing a tear to my eye. Let’s talk about – thank you for sharing that. This is really going to help a lot of people. Let’s talk about that care plan. Dr. Morris, I’m going to bring you in here. April says every cleft journey is different. Dr. Morris what you do is amazing. How do you prepare a surgery plan, I don’t know what you call it, for each child? How do you evaluate and tell us about your process when you first meet the child and how soon do you see that child? Is it days after birth or months? Tell us about your process so somebody listening can understand how you fit in the picture here.
David Morris, M.D. (Guest): Sure. There are a few parts to the question. So, first of all, I meet patients at all different times of the spectrum. Shriner’s Hospital is one of the busiest cleft centers in the country despite it’s being a small relatively – a relatively small and a comfortable place for patients and their families. It’s a place where kids just seem to like to come. But we see kids come at all different stages. So, some patients we meet for the first time where I am meeting an expectant mother who has ultrasound information like April described and they are coming to visit the hospital. They are coming to interview us and to see how we do things. And during those visits, usually the prospective mother will meet with a surgeon, with our speech pathologist and with several other members of the team. We also have other patients who may have had one or more surgeries at other hospitals in other parts of the state, in other states and they have transferred their care to us. So, patients come at different times and you have to adjust your approach to those patients and the time they are coming.
In addition, there are different types of patients. April is completely right in saying that every – just as every patient with a cleft is different and is an individual, every family is different; every cleft is different anatomically. So, what sometimes people don’t realize is that a patient can have a cleft of just the lip, sometimes there’s a cleft of just the palate. The most common scenario is there’s a cleft of the lip and the palate, so it extends through the lip all the way through the gum tissue where the teeth would be growing from the bone, through the hard palate and through the soft palate in the back and in addition, clefts can be on one side, which we call unilateral or they can be on both sides of the lip which we call bilateral. And they can be – affect anything from a small separation of the lip or the muscle may not be together, or I should say there’s a small notch in the lip to a widely separated lip. So, they are very different, and you have to come up with an approach based on the type of cleft that the patient has as well as the age at which they are presenting to you.
Host: So, how soon after birth do you meet with the parents to evaluate the child?
Dr. Morris: Well our preference is to meet with the patient and child as soon as possible. So, very often it will be a patient who was just born, and they may be a week or two old. And this is good if they are able to come in because even though we don’t do surgery quite that early, it’s important for the speech pathologist who very oftentimes at least at our center, is also the feeding specialist. Because it’s important that the mom is helped in how to effectively feed the baby so that the baby gains weight appropriately. That’s the most important thing soon after birth. So, we’d like to see the patients as soon as they can physically get into the hospital to see us.
Host: And then you do – how does that work? You do an evaluation and then you start to formulate the plan – you put that plan in place right then and there you start thinking about that?
Dr. Morris: Yes. One of the basic tenets of cleft care is that patients should be seen in the context of what we call a full multidisciplinary cleft team. And so, the team is made up by a surgeon, a psychologist, a speech pathologist, nurses, audiologists, pediatric dentists, orthodontists, and I’m probably leaving a couple out there. But when a cleft forms, there are all of these areas can be affected and there can be functional issues involving all of those different components. Now, at each stage, for example, in an infant, all of those things are not of equal concern. But we like to have the whole team see the patient at the initial visit.
Host: Okay. Got you. And then generally, how long before you do your first surgery?
Dr. Morris: Well for example in the – in a patient who has a cleft lip and palate; typically, the lip would be – repairing the lip would be the first operation and in general, we do that at about three to four months of age in patients who have a unilateral or one-sided cleft lip. In patients like Evan, who have a cleft lip that affects both sides; oftentimes we wait a little bit longer because there is some work that we do in preliminarily positioning the lip segments. So, in bilateral clefts, oftentimes a little later, maybe five to six months. I think Evan was let’s see, April you’ll have to help me. Evan was –
April: I think he was four months, the end of about four months.
Dr. Morris: About four months. Okay. End of four months. So, the lip is the first procedure that we do. And then the palate we do at about a year, one year of age.
Host: And how many surgeries generally, does it take? Is it just those two, I think you said Evan had three? I know this is specific to every person but, generally, how many surgeries would that child have?
Dr. Morris: Well in a patient who has a cleft lip and palate, I would say the minimum would be three surgeries, but there have been patients who have had more than a dozen surgeries and again, these are spread over the course of childhood, the teenage years and sometimes heading into early adulthood. So, at Shriner’s, we take care of patients up until they are roughly 21 years of age and different surgeries happen at different points in time and this is based on the patient’s anatomic development. So, the other procedures; the lip would be repaired at three to four months of age and then the palate at roughly a year and then if the cleft extends through the bony part of the maxilla or the upper jaw, where the teeth would grow; then we need to close that by placing bone there, where the child is missing bone and at our center we usually do that at about eight or nine years of age. It’s really based on the child’s dental development. But those three operations are the main ones and then I would say that additional operations are done as needed in patients at various times. And those can sometimes include things like revising the lip scar or revising the symmetry, improving the symmetry of the nose. Sometimes placing a dental implant if the patient is missing a tooth at the cleft site. Sometimes patients will need an additional procedure on the palate during childhood age to help with the speech development. Sometimes patients will benefit from jaw surgery during – and that’s usually at the late teenage years, when the jaws have completed their development.
Host: Okay, that makes sense. April, I’m going to bring you back in here. You were mentioning some of the challenges you had as far as feeding etc. As the child gets older then; both of you have mentioned speech a couple of times. Can you talk about speech challenges as well?
April: So, there is also a speech challenge that comes along with the clefting and for our daughter who will be six in January, she did struggle with speech. She was unable to initially say her p’s and b’s. She was unable to say t’s and d’s and if you say some of those sounds you are realizing that that’s the tongue going up to the top of your mouth in which the palate was affected for her. With Evan, he’s only one; so, the great thing for him is his sister took five years to conquer the milestone of saying her t’s and d’s which we just conquered this year. And Evan already is saying daddy with a d. So, once again, it goes back to every cleft child is different. Every challenge could be different. Terrilyn is almost to the point of finishing out speech and has hit some great milestones and goals that she needed to be at. Evan we will see what happens for him. The hard part for us in what we did have to do, and this is just parent helping another parent; having known that our first child struggled with her t’s and d’s in which her first name is Terrilyn, she would pronounce her name Errilyn and that was difficult for her. You tend to struggle seeing your child have to explain themselves on what they are trying to tell you. And once again, with great guidance, it’s all in how you approach your child, how you ask them to repeat themselves and not just be like I don’t get you. I don’t understand you. What are you saying? It’s helping to get them to realize, please repeat that for me, mommy can’t understand you. And for Evan, having just already heard him say daddy was heart melting. So, you start to learn the challenges. You start to understand what they are and every day you respect and count your blessings for the different milestones that they achieve and conquer.
Host: And Dr. Morris with clefting, is speech the biggest challenge that these children will carry with them into adulthood?
Dr. Morris: Well I think that the challenges vary based on the age and the stage of development the children are in. Speech is one of those persistent ones, but if we are able to anatomically do procedures so that we can give the kids the tools that they need to pronounce the sounds in the English language that they need to make; - actually let me just say – rephrase that. I think that the speech is a challenge and we have to give the kids anatomically the tools that they need to make early on so that they develop correct speech patterns and so there is a surgical component of this, and there’s also the component of the speech therapist and helping them to use the anatomy when you have reconstructed it.
Host: Okay. And April how do you – how did you prepare Terrilyn to deal with people – other children that may want to make fun of her? She talks funny. How did you – how do you prepare your child for that?
April: One of the things that we definitely thought was very important in order to prepare our child for going into school and having just the little scar on her lip and or not being able to pronounce her name correctly is going back to the initial beginning. We have always been very open with our daughter explaining to her that she has a special trademark that she gets to share with the world. One thing that we did that I believe has gone a very far way with our daughter and her confidence; is we put together a surgery book and that is all of the pictures that we took of her during her surgery journey at the hospital from before surgery through stitches in her lip, through recovering through surgery and her actually seeing her journey through pictures and what we also have done is we’ve actually asked her teachers if she could actually share that book and share her story with kids in her class. So, number one, they become aware of the cleft that she has and that other kids can have it too and two, it also has really built a strong confident little girl who is happy to talk about why she’s a little bit different, why she is extra special and I will be honest; it has come a long way for us.
Host: That’s good to hear. So, in closing for I guess two more questions. For a parent listening right now, what would you say to them either if they found out in advance that their child is going to have a cleft lip and palate or somebody that didn’t know and upon birth found out; what’s your advice? What would you say to them right now if they called you and said help me, what do I need to know? What would you say to them right now?
April: If I had a parent that called me and needed my advice; the very first thing I would tell them is that this is manageable. This is something that can be taken care of cosmetically. It is something that can be taken care of with a very strong medical team behind you. And I would tell any parent to contact Shriner’s Hospital for Children – Chicago and their Cleft Lip and Palate Team because I say over and over again; if we did not have the support from that team, if we did not have the miracle working hands of Dr. Morris for our children; the support from all of the teams and all of the people involved that Dr. Morris mentioned earlier; we would not be where we are with our journey. They have taught us so much and if you have a strong medical team backing you and also, a strong family supporting you; it is very, very key that your family is open about the situation and they are just as much inviting and acceptable to that child when that child is born and throughout their life.
Host: Very well said. Wow, thank you. And you answered my second question. I was going to ask about what Shriner’s meant to you. And Dr. Morris if we could wrap up with you. Again, for a parent listening from a medical perspective, a surgeon’s perspective; what would you say to them to ease their fears? I think April said it earlier. You know the look can be fairly shocking when the baby is born, and people see that baby for the first time, but I guess the good news is, or the very good news is it can be repaired. But from a medical standpoint, what would you tell a parent right now that is just kind of dealing with this for the first time?
Dr. Morris: Well, the first thing I usually tell parents is that I reassure them that there’s nothing that was preventable, that clefts happen because at some point in utero. There are complex ways that the parts of the lip and the palate are coming together, and nobody exactly knows why they occur. So, it’s not something that could have been prevented. The second thing is as April well put, this is entirely treatable and this again, is a matter of fixing the anatomy in a small part of the face and in doing so, these patients grow up to do anything that any child without a cleft would do. And then the other thing is that it’s important for patients to get education as soon as possible and in doing so going to a cleft center that treats patients with clefts all the time. And it’s never too early. As I said, patients – mothers come when baby is in utero, patients come within a week or two of life and it’s important to get the information early on and also from a functional perspective to make sure that they get help in effectively feeding the baby early on.
Host: Alright, well thank you both for your time today and sharing both of your points of view with us. This is really good stuff and I think it is going to make an excellent podcast and I’m sure will help a lot of families out there. So, April thank you for sharing your story, great stuff and Dr. Morris thank you as well.
About the Speakers
David Morris, M.D. | April, Mom of Patients
David Morris, M.D. is a board-certified plastic surgeon and chief of the craniofacial program at Shriners Children's Chicago.
April is the mom of not one but two children born with cleft lip and palate. The family travels from northwest Indiana for the specialized care team at our Chicago hospital.
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