Cleft lip and palate is the most common congenital facial anomaly. It can take many forms: bilateral or unilateral, complete or incomplete. Many cases of cleft lip and palate are diagnosed before birth using advanced imaging tests.
In this video series, you’ll hear from clinicians and patient families as they talk about the diagnosis, treatment and follow-up care for cleft lip and palate. Learn more about surgical repair, nasoalveolar molding, and the multidisciplinary team care offered to patients at The Children’s Hospital of Philadelphia’s Cleft Lip and Palate Program.
Diagnosis and treatment of cleft lip and palate
Explaining cleft lip and palate
Oskana Jackson, MD: Cleft lip and palate is the most common congenital facial anomaly. It occurs in about 1 in 800 births.
Meg Ann Maguire, RN: Celfting occurs at about the 6 to8 week point of pregnancy. The neural tube, which becomes the spinal cord, develops and the face forms in arches as it comes around. But sometimes an error happens, and in this case may result in a cleft lip. A cleft in an incomplete fusion of any type of anatomical structure.
Oskana Jackson, MD: There’s a spectrum in the severity of a cleft. You can have a cleft lip on one side, you can have it on both sides. It can involve only part of the lip, which we call incomplete, or it can involve the entire lip and extend into the floor of the nose. And we call that a complete cleft. It can also extend even further through the palate. And we call that a complete cleft lip and palate. The kids may look a little different, but they’re still normal kids.
Jesse Taylor, MD: The overwhelming majority of our patients lead very healthy, very, really normal lives.
Female: So we’re just going to go down this hallway.
Oskana Jackson, MD: Cleft palate alone is typically not diagnosed until after birth. But more and more cleft lip is diagnosed prenatally. It can be seen on an ultrasound at 20 weeks.
Nahla Khalek, MD, MPH: It’s always coming off the experience of their ultrasounds, wanting to figure out if it’s a boy or if it’s a girl.
Is this your first pregnancy?
Female: No, my second.
Nahla Khalek, MD, MPH: That initial hope, excitement and joy then gets replaced with anxiety and fear about the future for their unborn child. But can manage to kind of bring them back to that place of hope and joy.
There is a huge, huge improvement in a cosmetic outcome. Which I know is…
Oskana Jackson, MD: And we tell them what to expect, and briefly about cleft lip and palate care.
Nahla Khalek, MD, MPH: We then perform our own series of imaging studies.
Again, this is a 3D rendering. So typically…
High resolution ultrasound, 3D ultrasound, 4D ultrasound. We sit down with the family, review the data.
Oskana Jackson, MD: We found that meeting families prenatally really helps educate them. And helps them understand so that they are a little better prepared. And we can take it from there.
Jesse Taylor, MD: The doctor is gonna treat each patient through to maturity. Which I think is a really nice thing for families. You get to develop a really deep relationship with each other. In the grand scheme of life, and everything that’s going to happen to him, this is one of the most important things.
Oskana Jackson, MD: So we may meet our new patients as infants, shortly after birth, but we continue to see them on a regular basis all the way through high school and even beyond.
Jesse Taylor, MD: Our cleft lip and palate team sees about 700 to 800 patients each year.
Oskana Jackson, MD: And we perform over 1,000 surgical procedures related to cleft lip and palate each year. We are a very high volume cleft center. And what this means for patients coming to see us is that we have experience in all the nuances of cleft lip and palate care, from the initial repairs, to secondary procedures, to routine, regular care throughout childhood and adolescence.
Jesse Taylor, MD: And so when someone comes to see me or one of my colleagues, they’re getting somebody who’s doing this day in and day out.
Cynthia Solot, MA, CCC/SLP: People come here from all over the country, they come here from all over the world.
Meg Ann Maguire, RN: What makes our team special is not only the fact that we have amazing surgeons, but their dedication to their patients.
Jennifer Len (parent): And it just was very comforting knowing that you’re tiny, tiny little baby is going to be placed in her arms to have something very serious done to him. I would tell other parents to come to CHOP because there’s no better place. It’s been a wonderful place.
Surgery and treatment for cleft lip and palate
Oksana Jackson, MD: The surgical treatment for cleft lip and palate varies according to the severity of the cleft.
For a cleft that’s incomplete, meaning it doesn’t extended all the way into the nose, we proceed with surgery at about 3 or 4 months of age.
Our goals for repair of the cleft lip is to restore the normal anatomy. To repair the lip with a scar that is almost invisible. To restore the shape of the nose so that you might not see that the child ever had a cleft.
Meg Ann Maguire, RN: We talk about the repair of the palate generally being in a range of 9 to 12 months of age.
Oksana Jackson, MD: For palate surgery, our goal is to restore mechanism for normal speech. The cleft palate repair that we do is a technique called the Furlow cleft palate repair. This is a technique that we have great experience in, probably more experience than anywhere else in the world.
Cynthia Solot, MA: You have the best and the brightest people here. You have the most innovative research and treatments here.
Cynthia Solot, MA: Surgeons, who are the ones writing the research, and writing the textbooks, at the same time performing this amazing surgery to help these children.
Jesse Taylor, MD: We’re always trying to advance care here at CHOP to move the field forward.
Oksana Jackson, MD: We are constantly assessing our outcomes and modifying our treatments.
Jesse Taylor, MD: Can we do things with less stages of surgery? With less invasive surgery?
Oksana Jackson, MD: Better results to the lip and nose, better speech outcomes, continued evolution of techniques, has resulted in fewer surgeries to provide the best care and the best outcomes to our patients.
Nasoalveolar molding (NAM) for cleft lip and palate
Female: So we have the mold. And that was how…
Oksana Jackson, MD: One of the treatments that our Cleft Lip and Palate Center offers, that’s not offered everywhere, is nasoalveolar molding. And this is a pre-surgical treatment done by orthodontists, specialized orthodontists. The goal of nasoalveolar molding is to narrow the cleft and improve the symmetry of the lip and nose before the child even gets to surgery. It narrows the cleft and it shapes the nose in preparation for surgery.
Kristen Lowe, DDS: What the appliance does is it essentially take a wide defect and make it out a very small one. We restore the nose to a more normal anatomy. And from there the surgeon has a much easier surgery.
Jesse Taylor, MD: And by bringing those elements together so that they’re closer, it allows the surgery to be done more easily. And I think leads to a better result, which is probably the most important advance in cleft care in the last 30 years.
Jennifer Len (parent): It was similar to a retainer. Steven’s mouth was molded at 2 weeks old, and this device was made and it sat in his mouth. And we had to put rubber bands on it, and tape it over to his cheeks.
Stephen Len (parent): We could actually see it making a difference and actually closing some of the cleft.
Kristen Lowe, DDS: It’s really only offered in a few centers across the country. So we’re happy that we can provide that here at CHOP.
Cleft lip and palate: A team approach to care
Oksana Jackson, MD: Families can expect, when they come to see us, that we’re going to do our best to treat them over the span of their childhood and teenage years. We are going to perform their surgical repairs. But we’re also gonna monitor all aspects of their child’s health and development as they grow up.
Stephen Len (parent): It’s not just about your surgeon here at CHOP, treating your child. They have an entire team dedicated to cleft lip and palate.
Female: You’re going to be in chair two.
Scott Bartlett, MD: When a parent comes to CHOP with their child for a cleft clinic visit, they’re gonna find every specialist that they could possible need.
Oksana Jackson, MD: Say, “Ahh”
Oksana Jackson, MD: That was perfect.
Oksana Jackson, MD: The kids benefit from seeing the same providers as they grow up because those providers get to know them well.
Oksana Jackson, MD: 60, 60.
Child: 60, 60.
Oksana Jackson, MD: Good, great.
Oksana Jackson, MD: Our team consist of surgeons, pediatricians, speech pathologists, nurse practitioners, nurses, psychologists, and social workers.
Cynthia Solot, MA, CCC/SLP: Can you tell me what this is?
A speech pathologist is a very important person in the life of a child with a cleft palate. A speech pathologist’s role is to determine if a difficulty is present, what the nature of that difficulty is, to collaborate with the team so that we can develop treatments for that child.
Scott Bartlett, MD: Having the ability to do nasendoscopy, a technique where we can watch the palate work during speech — with a speech pathologist that’s specifically trained to look at cleft speech — is something that’s unique to this institution and the quality cleft programs.
Cynthia Solot, MA, CCC/SLP: Nasendoscopy is a diagnostic test where we insert a narrow tube, with a camera and a light, to observe the function of the palate during speech. Then the plastic surgeon and the speech pathologist will analyze the various characteristics of the palate function and determine what type of treatment might be indicated.
Kristen Lowe, DDS, MS: We want the child to have the ability to communicate and interact for the best quality of life possible.
Jesse Taylor, MD: The orthodontist and the dentist are here to check the health of the teeth and make sure the teeth are in the appropriate location.
Kristen Lowe, DDS, MS: What we do in the team is collaborate and we come up with the best overall plan. So we’re not just looking at the teeth. We’re not just looking at the surgical needs. But we come up with what’s gonna be the best plan for the patient as a whole.
Charlene Deuber, DNP, CRNP, CPNP: Nurse practitioners offer a unique addition by looking at the patient in a very holistic sort of sense.
Meg Ann Maguire, RN, MS, CRNP, CPNP: I can be a vital contact for that family to help explain the process, clarify the process, or help just provide that comfort.
Charlene Deuber, DNP, CRNP, CPNP: We are the first line responders, if you will, to patient concerns.
Meg Ann Maguire, RN, MS, CRNP, CPNP: I’m the constant that can communicate with the orthodontist, the surgeon, the speech pathologist, to help families better understand the recommendations our team may have.
Jesse Taylor, MD: The other thing I think we do particularly well is provide support to the new mothers as soon as their children are born.
Meg Ann Maguire, RN, MS, CRNP, CPNP: Keeping them upright is not only good to help with…
Jesse Taylor, MD: Helping families find a strategy to allow them to feed their babies with minimal frustration.
Meg Ann Maguire, RN, MS, CRNP, CPNP: It’s gonna work on aligning …
Scott Bartlett, MD: You don’t get them through that critical period with proper feeding, you can have many, many negative health consequences. So we’re fortunate to really have great nurses who are experts in cleft care and feeding of the infants.
Stephen Len (parent): Every time we have an issue, whether it’s hearing, feeding, speech, whatever it may be, there’s somebody waiting right there to answer that question.
Leanne Magee, PhD: So we talk with kids about feelings, and thoughts and school.
Oksana Jackson, MD: We also have psychologist that see many of our children. And can help them in many ways.
Veronica Baez (patient): Having a psychologist on the team was very helpful for me. Because going through this was very difficult and I didn’t know how to open up and talk about it. I just broke down in tears.
Leanne Magee, PhD: We’re dealing with additional stressors like major reconstructive surgeries, appearance differences, speech differences, things that really affect kids coping and functioning at home and in school.
Veronica Baez (patient): I just told her, like, what was going on. And she told me that, you know, “This is normal. You’re not the only one. You’re not alone.” She helped me so much.
Oksana Jackson, MD: This type of team care is very important for children with cleft lip and palate. And that’s because they have many needs.
Jesse Taylor, MD: We have team meetings where we get together and we discuss what are the next steps.
Leanne Magee, PhD: It’s a very collaborative group meeting. Everybody weighs in, everyone renders an opinion.
Female: As a result of all of us talking together and the input from all of the different specialist…
Scott Bartlett, MD: We formulate an overall assessment and then put a cohesive plan together, which we think is the best formula for success for that patient.
Jennifer Len (parent): This team, they’re just amazing people. They’re passionate about what they do. They care about you on such a personal level. They’re just so genuine in everything that they do.
Jesse Taylor, MD: Appearance in our world is important. Almost everything in life is affected by our appearance.
Scott Bartlett, MD: It’s that building that positive self-esteem about their appearance.
Jesse Taylor, MD: And so the first step for me it to create an environment in the clinic, and we’re behind closed doors, and to say, “We’re gonna say things here that you may not say to each other at home. Or that you may not say to your classmates at school.”
Veronica (patient): I feel welcomed, like important. Like I can tell him anything. I can tell him what’s wrong and he’ll tell me, “Oh I can fix that. I can help you.”
Veronica’s mom: He makes the patient and the parents feel that we are in a safe place by being friendly, being open, and being very honest.
Jesse Taylor, MD: You doing OK? You’re gonna do great.
Leanne Magee, PhD: It’s important to have a psychologist on a team for a couple of reasons. We get to educate families about the emotional experience of having a child with a craniofacial condition like cleft lip and palate.
The first thing is those are all totally normal reactions to have.
We assess growth and development, school functioning, emotional behavioral functioning, social functioning. And explain the procedures in an age-appropriate way so that kids can really understand and become a partner in their treatment.
We can help families think about themselves as parents, as community members, and as role models for their children. Teaching kids, and siblings, and parents how to answer a question if another kid walks up to them in preschool and says, “What’s wrong with your lip or your nose.” We have the opportunity to help families see beyond their child’s diagnosis. And that allows that kid then to thrive.
Oksana Jackson, MD: We get to see them grow up, which is wonderful. They turn to us with their questions and they trust us. And that continues until basically the kids graduate from high school, and sometimes beyond.
Stephen Len (parent): Steven’s doctors at CHOP, by far, make you feel as if you’re the only patient there that day. They take as long as necessary, they know everything about you.
Jennifer Len (parent): They’re just so genuine in everything that they do. Dr. Jackson is caring, she’s sensitive, she’s the absolute best.
Jesse Taylor, MD: Everybody’s here for you, everybody’s here trying to help you. You’re a part of our extended family here.
Veronica’s mom: Dr. Taylor, he takes his time to understand and to help you to reach all the needs that you have.
Oksana Jackson, MD: We see them from year to year. So we know their families.
Kristen Lowe, DDS: And they become, sort of, like your own family as well.
Cleft lip and palate: Meet the Baez family
Veronica Baez (parent): Our daughter Veronica is having a surgery today. She was born with cleft lip and palate. And today she’s going to have a jaw surgery.
Jesse Taylor, MD: Veronica’s family has been a big part of our team for a lot of years. And I’ve watched Veronica grow up.
Veronica (patient): I think Dr. Taylor is great. Every single time I see him, he gives me a hug and I feel welcomed.
Veronica Baez (parent): Veronica was born in Quito, Ecuador. And she was diagnosed with cleft lip and palate. Six months later she had the surgery, they closed her palate. But after that there was nothing else that we could do for her in Ecuador. The medicine was not as advanced as it was here. We got in touch with my sister who lives up here in America and she was able to call Children’s Hospital. That was when we started the whole journey.
We made decision to move up here to America and come to Children’s Hospital to the best hospital in the world. And to give the best to our daughter.
Leanne Magee, PhD: Veronica is definitely a resilient kid. She’s very bright, very high achieving, a great athlete, and really connected with friends. For her, surgery was a scary thing.
Veronica Baez (parent): For the past 15 years that we’ve been coming to Children’s Hospital, Veronica had a retouch of her nose tip, and a little bit of her lip as well. Some teeth removed, bone graphed, and today she is going to have a jaw surgery. And they are going to realign her chin.
Jesse Taylor, MD: It’s a fair size surgery. It’s painful, but it’s also one of the most powerful tools we have to change appearance and to improve function of the face.
Veronica (patient): The doctors, really explained it to me, they didn’t make it sound scary even though it was a big step. It was OK. I trusted them.
Leanne Magee, PhD: She had a lot of anxiety about how this would change how she looks, how she speaks, what other people might think of her.
Jesse Taylor, MD: So we’re basically going to move the upper jaw forward via an incision inside the lip.
Veronica (patient): It made me feel like I was important to them and that they really wanted to help me. But I think Dr. Taylor is great. I can tell him anything, I can tell him what’s wrong and he’ll tell me, “Oh I can fix that. I can help you.”
Jesse Taylor, MD: Everything went really well. I was very pleased with how the bones moved and then came together after we moved them. I was very pleased with the fixation and she looks superb.
When you bring that mid-face forward, you get filling of the soft tissues in the mid-face which can actually help with the scarring of cleft lip. And then you get a much more harmonious facial profile. It’s one of the most powerful tools we have to improve appearance in all of what we do.
Veronica Baez (parent): All the doctors, they have this amazing knowledge and this amazing desire to help our kids. She grew up coming to Children’s Hospital. It’s part of their life. It’s part of our lives. It’s our journey. And you’re not alone. You have a big team, full of knowledge, support.
Veronica: Well, after 15 years being at Children’s Hospital, I feel great. I’m very confident with myself now.
Veronica Baez (parent): Fifteen years sounds long though, but it’s not. It’s just part of your life. Every year you see changes. You see a difference. You see results. You see great things happening. Now looking at Veronica, it’s amazing. It’s something that ... I just have to say thank you.
Cleft Lip and Palate: Meet the Len Family
Stephen Len (parent): Stephen, our son, was born with an isolated, unilateral cleft lip and palate.
Jennifer Len (parent): He was diagnosed at our 20 week ultrasound. It was heartbreaking to say the least.
Stephen Len (parent): Absolutely. The high-risk doctor that diagnosed Stephen instructed us to go to CHOP. And he had already sent our information along. That’s how much conviction he had in Children’s Hospital of Philadelphia.
Not knowing anything about cleft lip and palate, not knowing what his future would look like, not knowing what the treatments were.
Jennifer Len (parent): All we knew was this was the place to come if you had a child that needed the care. We were welcomed with open arms from the minute we walked in the door.
Stephen Len (parent): They introduced themselves on a first-name basis. They sat with us. We felt as if we were the only people in that hospital having anything done that day.
Oskana Jackson, MD: Our plan of care for him was to proceed with nasoalveolar molding, so that we could get him ready for surgery and optimize his lip and palate care. And then when he was ready, we repaired his cleft lip.
Jennifer Len (parent): Stephen has been through a lot. His first surgery was at 4 months old. That was to fix his lip and his nose. Then at 10 months old he had his palate corrected.
This team is, they’re just amazing people. They’re passionate about what they do, they care about you on such a personal level.
Stephen Len (parent): And every time we have an issue, whether it’s hearing, feeding, speech, whatever it may be, there’s somebody waiting right there to answer that question and assist us with that.
Oskana Jackson, MD: When I first met them, they were terrified. They were terrified about going through surgery. And as we went through this process, they became more comfortable and more confident. And Stephen’s done really well.
Jennifer Len (parent): Dr. Jackson is awesome. She’s a wonderful person. And it just was very comforting knowing that your tiny, tiny, little baby is going to be placed in her arms.
Stephen Len (parent): The first year is scary, coming up on Stephen’s second birthday and it’s a very different story. It certainly gets easier, especially as your child progressive through the surgeries. You get less people looking at him when you’re at the grocery store. More people just recognizing that you have an adorable 18-month-old child.
Topics Covered: Cleft Lip and Palate