In the United States, nearly 6,800 babies are born with oral-facial clefts annually.
The Cleft Palate and Craniofacial Institute at St. Louis Children's Hospital, established in 1978 as part of the Division of Plastic Surgery, is the largest and oldest center of its kind in the Midwest. The team has treated more than 4,000 patients with cleft lip and palate, and another 2,800 with major craniofacial anomalies.
In this segment, Alison Snyder-Warwick, MD discusses cleft lip and palate in children and when to refer to a pediatric plastic and reconstructive surgeon.
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Cleft Lip and Palate
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Learn more about Alison K. Snyder-Warwick, MD
Alison K. Snyder-Warwick, MD
Alison K. Snyder-Warwick, MD, director of the Facial Nerve Institute, specializes in facial reconstruction for facial nerve disorders and facial paralysis, treatment of facial clefts (including cleft lip and cleft palate), ear reconstruction, reconstruction of obstetrical brachial plexus injuries, and microsurgical procedures in both children and adults.Learn more about Alison K. Snyder-Warwick, MD
Transcription:
Cleft Lip and Palate
Melanie Cole (Host): In the United States, nearly 6,800 babies are born with oral-facial clefts annually. My guest today, is Dr. Alison Snyder-Warwick. She’s a Washington University Pediatric Plastic and Reconstructive Surgeon at St. Louis Children’s Hospital. Welcome to the show, Dr. Snyder-Warwick. What is cleft lip and palate?
Dr. Alison Snyder-Warwick (Guest): Thank you, Melanie, it’s nice to be here. Cleft lip and palate is a very common birth anomaly, as you mentioned. It’s actually one of the most common birth anomalies in the US and in the world. What it is, is all the normal structures are present, but they haven’t finished forming correctly, so there is often a gap, and it can extend from the lips all the way up into the nose, or part way up into the nose for a cleft lip. The palate is the roof of the mouth, and there can be a gap in the palate that, again, is the entire length of the palate or just a portion of it.
Melanie: Is this something that’s detectable in utero through ultrasound? Would we know ahead of time?
Dr. Snyder-Warwick: More and more families are finding this diagnosis ahead of time because of the advances in ultrasound technology, but it is, for obvious reasons, easier to see a cleft lip and a little bit more difficult to see into the mouth on ultrasound. We frequently do find out about a cleft lip, but a cleft palate is more difficult to find so that may be something that is diagnosed after birth more commonly.
Melanie: Are there certain risk factors which would predispose an infant to this?
Dr. Snyder-Warwick: There can be a genetic predisposition for a cleft lip or a cleft palate and sometimes it does run in families, but most commonly, it’s sporadic, meaning that there’s no family history of having a cleft lip or palate. We think that cleft can form for a variety of reasons and most commonly, we don’t exactly know the reason. It could be different medication or drug exposures and maybe a nutritional reason or maybe genetic. We think that the causes are multifactorial, but we do know that they happen commonly. Development is a very busy time, and the facial features form during the 6th through 10th weeks of gestation so very early on during pregnancy. If a step gets delayed along the way or gets skipped, development keeps proceeding. You don’t get to go back and make up that step later, so that’s why it’s a very common anomaly.
Melanie: So once the infant is born, what are some of the complications associated with cleft lip and cleft palate in terms of feeding and even social and emotional for the parents?
Dr. Snyder-Warwick: Yes, it can be a very difficult time. I think that the time right after birth is difficult for a lot of families for a variety of reasons. It’s a big transition. We do like to see children who have cleft lip and/or palate as soon as possible after birth. Our primary concerns are, first of all, airway. Is the child able to breathe well on their own? That’s because with certain circumstances the lower jaw or the mandible can be undergrown and very small and the base of the tongue attaches to the floor of the mouth, and as the mandible grows normally, it pulls the base of the tongue and the entire tongue forward with growth. If that hasn’t occurred, the tongue is relatively in the way of the airway and can cause some difficulties especially when the child is laying on their back. That’s something that we know immediately at the time of birth if the child is struggling with that. We see that problem frequently in association with the cleft palate, and the though is that the tongue was actually relatively in the way of the palate development during gestation as well.
And then our next concern after breathing is nutrition and so we follow weight gain very closely for kids who have a cleft lip or cleft palate. The cleft in the lip as well as in the palate can cause difficulty with sucking, particularly with the palate because you can’t generate negative suction with a gap in the roof of the mouth. We do use a special feeding system for children that doesn’t require them to generate as much suction to get milk or formula from a bottle. If there is a cleft palate – if it involves the majority of the palate, it’s essentially impossible for that child to nurse or breastfeed and again, it’s for the same reason, you can’t generate the suction to get the milk and so the children frequently fatigued and are unable to complete a feeding. They’ll fall asleep, and they don’t get adequate nutrition, so instead the mothers who would like to breastfeed can pump and then use the special bottle system to feed their children, and we do follow the weight gain closely as a measure of getting adequate nutrition.
Melanie: And when is a specialist called in? When do they refer?
Dr. Snyder-Warwick: As soon as possible would be ideal. We see a lot of expecting moms who maybe have found out on an ultrasound that their child has a cleft lip or potentially a cleft lip and palate, but as soon after birth as possible is better again, so we can be sure that feeding is going well and we can follow the child closely. I think a lot of families have a lot of anxiety related to this diagnosis and concerns about what lies ahead and so we like to go over the overall plan of care for the child. We follow children throughout all of childhood in our multidisciplinary team, and it’s our Cleft and Craniofacial Team Clinic, and that means that there are a variety of specialists who will be following the child closely. At different times in their life, different members of our team may become more prominent in their care. This team includes Plastic Surgery, Otolaryngology, Speech, Dentistry, Orthodontics, sometimes Genetics, Audiology. There’s really a variety of providers – Psychology, as well, Developmental Psychology – a variety of providers who contribute to the care of the child.
Melanie: So that’s a great team approach for managing and correcting cleft abnormalities, now tell us a little bit about how it’s treated.
Dr. Snyder-Warwick: There is some surgical treatment involved for children with cleft lip and palate. The most frequent anomaly that we see is a combination of both the cleft lip and cleft palate. For children who have a cleft that involves the lip, the gum line and then the roof of the mouth, we anticipate about three procedures – three surgical procedures at a minimum.
The first one would be the cleft lip repair, which is usually around three to six months of age. Sometimes we do some molding therapy, which is called nasal alveolar molding, prior to the lip repair and what that is, is similar to an orthodontic retainer that later has some prongs that extend to the nose. That helps move the arch of the gum line into better position prior to surgery to make it more of an arch again. It helps decrease the gap or the size of the cleft. If it’s a bilateral cleft, which means it involves both sides of the lip, it helps to get that in better alignment because usually the center piece, which we call the premaxilla, is a little bit more forward than the two sides of the lips, so we like to get that into better positioning ahead of time. It also helps to shape the nose before surgery. If that occurs, that requires a little bit more time, which makes the lip repair just slightly later.
After the lip repair, the next surgical procedure would be the palate repair, and that’s usually around a year of age. The reason we do it at that time is that is the time that speech will be beginning to develop and the palate repair is very essential for speech because it helps to get the muscles of the roof of the mouth in better alignment to help with certain sounds. And then later, the gumline is repaired, and that’s usually repaired around the time of mixed dentition, which means there’s a combination of primary teeth, or baby teeth and then the permanent teeth, which are the adult teeth. That’s usually between 8 to 11 years of age.
There may be other surgical procedures involved. There may be speech therapy involved. Children frequently require orthodontics, which of course would be a little bit later. Kids usually have an orthodontic evaluation at the age of eight. There may be some other procedures down the road when the child is fully grown, as well, that may impact the relationship of the shape of the jaws or the position of the nose, or assist with breathing through the nose. It really is a custom pathway depending on the child’s needs.
Melanie: So wrap it up for us, Dr. Snyder-Warwick, and give other pediatricians your best advice about cleft lip and palate and tell us about your team. Why is St. Louis Children’s Hospital so great to work with?
Dr. Snyder-Warwick: Well, we really encourage you to reach out to us as soon as possible when you have a child that has a cleft lip or cleft palate, or that you’re concerned may even have a sub-mucous cleft palate, which is a cleft that you don’t see overtly from the outside, but is in relationship to the bone and the muscles under the oral lining. Children with cleft lip and cleft palate do require specialized care. We want to be involved early on to help the child with feeding and with the airway if necessary. We’re really here to help support you along the way. We follow the child with you throughout their childhood and into early adulthood, and we are a resource to assist with all the needs that they may have. We have a very approachable group of specialist who are excited to collaborate with you and work together to help the child obtain all of the services and medical needs and even other supportive needs that they may have.
Melanie: Thank you, so much, for being with us today. It’s really great information. A physician can refer a patient by calling Children’s Direct Physician Access Line at 1-800-678-HELP, that’s 1-800-678-4357. You’re listening to Radio Rounds at St. Louis Children’s Hospital. For more information on resources available at St. Louis Children’s Hospital, you can go to StLouisChildrens.org, that’s StLouisChildrens.org. This is Melanie Cole. Thanks, so much, for listening.
Cleft Lip and Palate
Melanie Cole (Host): In the United States, nearly 6,800 babies are born with oral-facial clefts annually. My guest today, is Dr. Alison Snyder-Warwick. She’s a Washington University Pediatric Plastic and Reconstructive Surgeon at St. Louis Children’s Hospital. Welcome to the show, Dr. Snyder-Warwick. What is cleft lip and palate?
Dr. Alison Snyder-Warwick (Guest): Thank you, Melanie, it’s nice to be here. Cleft lip and palate is a very common birth anomaly, as you mentioned. It’s actually one of the most common birth anomalies in the US and in the world. What it is, is all the normal structures are present, but they haven’t finished forming correctly, so there is often a gap, and it can extend from the lips all the way up into the nose, or part way up into the nose for a cleft lip. The palate is the roof of the mouth, and there can be a gap in the palate that, again, is the entire length of the palate or just a portion of it.
Melanie: Is this something that’s detectable in utero through ultrasound? Would we know ahead of time?
Dr. Snyder-Warwick: More and more families are finding this diagnosis ahead of time because of the advances in ultrasound technology, but it is, for obvious reasons, easier to see a cleft lip and a little bit more difficult to see into the mouth on ultrasound. We frequently do find out about a cleft lip, but a cleft palate is more difficult to find so that may be something that is diagnosed after birth more commonly.
Melanie: Are there certain risk factors which would predispose an infant to this?
Dr. Snyder-Warwick: There can be a genetic predisposition for a cleft lip or a cleft palate and sometimes it does run in families, but most commonly, it’s sporadic, meaning that there’s no family history of having a cleft lip or palate. We think that cleft can form for a variety of reasons and most commonly, we don’t exactly know the reason. It could be different medication or drug exposures and maybe a nutritional reason or maybe genetic. We think that the causes are multifactorial, but we do know that they happen commonly. Development is a very busy time, and the facial features form during the 6th through 10th weeks of gestation so very early on during pregnancy. If a step gets delayed along the way or gets skipped, development keeps proceeding. You don’t get to go back and make up that step later, so that’s why it’s a very common anomaly.
Melanie: So once the infant is born, what are some of the complications associated with cleft lip and cleft palate in terms of feeding and even social and emotional for the parents?
Dr. Snyder-Warwick: Yes, it can be a very difficult time. I think that the time right after birth is difficult for a lot of families for a variety of reasons. It’s a big transition. We do like to see children who have cleft lip and/or palate as soon as possible after birth. Our primary concerns are, first of all, airway. Is the child able to breathe well on their own? That’s because with certain circumstances the lower jaw or the mandible can be undergrown and very small and the base of the tongue attaches to the floor of the mouth, and as the mandible grows normally, it pulls the base of the tongue and the entire tongue forward with growth. If that hasn’t occurred, the tongue is relatively in the way of the airway and can cause some difficulties especially when the child is laying on their back. That’s something that we know immediately at the time of birth if the child is struggling with that. We see that problem frequently in association with the cleft palate, and the though is that the tongue was actually relatively in the way of the palate development during gestation as well.
And then our next concern after breathing is nutrition and so we follow weight gain very closely for kids who have a cleft lip or cleft palate. The cleft in the lip as well as in the palate can cause difficulty with sucking, particularly with the palate because you can’t generate negative suction with a gap in the roof of the mouth. We do use a special feeding system for children that doesn’t require them to generate as much suction to get milk or formula from a bottle. If there is a cleft palate – if it involves the majority of the palate, it’s essentially impossible for that child to nurse or breastfeed and again, it’s for the same reason, you can’t generate the suction to get the milk and so the children frequently fatigued and are unable to complete a feeding. They’ll fall asleep, and they don’t get adequate nutrition, so instead the mothers who would like to breastfeed can pump and then use the special bottle system to feed their children, and we do follow the weight gain closely as a measure of getting adequate nutrition.
Melanie: And when is a specialist called in? When do they refer?
Dr. Snyder-Warwick: As soon as possible would be ideal. We see a lot of expecting moms who maybe have found out on an ultrasound that their child has a cleft lip or potentially a cleft lip and palate, but as soon after birth as possible is better again, so we can be sure that feeding is going well and we can follow the child closely. I think a lot of families have a lot of anxiety related to this diagnosis and concerns about what lies ahead and so we like to go over the overall plan of care for the child. We follow children throughout all of childhood in our multidisciplinary team, and it’s our Cleft and Craniofacial Team Clinic, and that means that there are a variety of specialists who will be following the child closely. At different times in their life, different members of our team may become more prominent in their care. This team includes Plastic Surgery, Otolaryngology, Speech, Dentistry, Orthodontics, sometimes Genetics, Audiology. There’s really a variety of providers – Psychology, as well, Developmental Psychology – a variety of providers who contribute to the care of the child.
Melanie: So that’s a great team approach for managing and correcting cleft abnormalities, now tell us a little bit about how it’s treated.
Dr. Snyder-Warwick: There is some surgical treatment involved for children with cleft lip and palate. The most frequent anomaly that we see is a combination of both the cleft lip and cleft palate. For children who have a cleft that involves the lip, the gum line and then the roof of the mouth, we anticipate about three procedures – three surgical procedures at a minimum.
The first one would be the cleft lip repair, which is usually around three to six months of age. Sometimes we do some molding therapy, which is called nasal alveolar molding, prior to the lip repair and what that is, is similar to an orthodontic retainer that later has some prongs that extend to the nose. That helps move the arch of the gum line into better position prior to surgery to make it more of an arch again. It helps decrease the gap or the size of the cleft. If it’s a bilateral cleft, which means it involves both sides of the lip, it helps to get that in better alignment because usually the center piece, which we call the premaxilla, is a little bit more forward than the two sides of the lips, so we like to get that into better positioning ahead of time. It also helps to shape the nose before surgery. If that occurs, that requires a little bit more time, which makes the lip repair just slightly later.
After the lip repair, the next surgical procedure would be the palate repair, and that’s usually around a year of age. The reason we do it at that time is that is the time that speech will be beginning to develop and the palate repair is very essential for speech because it helps to get the muscles of the roof of the mouth in better alignment to help with certain sounds. And then later, the gumline is repaired, and that’s usually repaired around the time of mixed dentition, which means there’s a combination of primary teeth, or baby teeth and then the permanent teeth, which are the adult teeth. That’s usually between 8 to 11 years of age.
There may be other surgical procedures involved. There may be speech therapy involved. Children frequently require orthodontics, which of course would be a little bit later. Kids usually have an orthodontic evaluation at the age of eight. There may be some other procedures down the road when the child is fully grown, as well, that may impact the relationship of the shape of the jaws or the position of the nose, or assist with breathing through the nose. It really is a custom pathway depending on the child’s needs.
Melanie: So wrap it up for us, Dr. Snyder-Warwick, and give other pediatricians your best advice about cleft lip and palate and tell us about your team. Why is St. Louis Children’s Hospital so great to work with?
Dr. Snyder-Warwick: Well, we really encourage you to reach out to us as soon as possible when you have a child that has a cleft lip or cleft palate, or that you’re concerned may even have a sub-mucous cleft palate, which is a cleft that you don’t see overtly from the outside, but is in relationship to the bone and the muscles under the oral lining. Children with cleft lip and cleft palate do require specialized care. We want to be involved early on to help the child with feeding and with the airway if necessary. We’re really here to help support you along the way. We follow the child with you throughout their childhood and into early adulthood, and we are a resource to assist with all the needs that they may have. We have a very approachable group of specialist who are excited to collaborate with you and work together to help the child obtain all of the services and medical needs and even other supportive needs that they may have.
Melanie: Thank you, so much, for being with us today. It’s really great information. A physician can refer a patient by calling Children’s Direct Physician Access Line at 1-800-678-HELP, that’s 1-800-678-4357. You’re listening to Radio Rounds at St. Louis Children’s Hospital. For more information on resources available at St. Louis Children’s Hospital, you can go to StLouisChildrens.org, that’s StLouisChildrens.org. This is Melanie Cole. Thanks, so much, for listening.