Your Child’s Cleft Care Journey

The cleft journey unfolds over time. You don’t have to figure it out all at once.

This guide serves as a roadmap, organizing care into developmental stages and key areas of understanding so you can see both where you are now and what may lie ahead. It’s a place to return to whenever new questions arise or decisions feel closer.

For Kids, Teens & Young Adults

The Cleft Journey is designed primarily for parents and caregivers but if you’re looking for something written directly for kids and teens, explore Growing Up with Cleft, a resource created just for them.

Growing Up With Cleft

This guide is provided for educational purposes only and is not intended as medical advice or a substitute for care from your child’s medical team.

UNDERSTANDING CLEFT LIP & PALATE

Learning about cleft lip and cleft palate often brings many questions. The terminology can be unfamiliar, and it is not always immediately clear how the conditions differ or what they mean. The information below provides some basic explanations and definitions to help orient you to the fundamentals.

An Overview

When families first learn about cleft lip or cleft palate, it is natural to have many questions. The terms and descriptions can sometimes feel confusing at first. The information here offers some basic explanations to help clarify the condition and provide a starting point for understanding.

  • Cleft lip and cleft palate are conditions that affect how a baby’s lip and/or the roof of the mouth form during early pregnancy. They are related, but not the same.

    A baby may have only a cleft lip, only a cleft palate, or a combination of the two.

  • A cleft lip is an opening or separation in the upper lip.

    It can look different from person to person. In some cases, it appears as a small notch in the lip or a split through part of the lip (called an incomplete cleft). In other cases, it is a wider opening that may extend through the upper gum and palate and into the base of the nose (called a complete cleft).

    A cleft lip may occur on one side of the lip (unilateral) or on both sides (bilateral).

  • A cleft palate involves an opening in the roof of the mouth and may affect the hard palate (the front, bony part), the soft palate (the back, softer part), or both. Because it is inside the mouth, a cleft palate is not always visible.

    There is also a form known as a submucous cleft palate, in which the muscles of the soft palate do not form correctly, but the tissue covering them looks intact from the outside.

  • A cleft lip or cleft palate develops very early in pregnancy, when a baby’s facial structures are forming. Typically, the tissues of the upper lip and the palate (the roof of the mouth) come together and close within the first few months of the pregnancy. In some babies, these tissues do not fully merge, leaving an opening in the lip, the palate, or both.

  • Facial clefts occur in approximately 1 out of every 600 births in the United States, making them one of the most common birth differences seen in newborns.They happen for many reasons, and for many, the exact cause is never known. Genetics can play a role, and certain environmental factors during pregnancy may also contribute. Sometimes a cleft is part of a genetic syndrome, but more often it occurs on its own without any additional medical conditions.

    With advances in prenatal imaging, more and more families are learning of the diagnosis during a routine ultrasound. For others, the cleft is first noticed at birth. In some cases, especially when the cleft involves only the soft palate or submucous cleft, the difference may not be visible right away and might not be diagnosed until later in infancy or childhood, when symptoms prompt further evaluation.

GROWING THROUGH THE STAGES

Cleft care intersects with growth and development. While every child’s experience is unique, certain themes and decisions tend to arise at different stages. This section offers an age-based orientation to help you understand what often matters most at each point in the journey.

Starting the Journey: Diagnosis & Early Orientation

Receiving a cleft diagnosis can happen at different points, during pregnancy, at birth, or shortly after. This early phase is often a time of learning and adjustment, as families begin to understand the diagnosis, connect with a care team, and take in what lies ahead. The information here highlights some of the experiences families commonly encounter at this stage and what tends to matter most early on.

  • Cleft lip and cleft palate are conditions that affect how a baby’s lip and/or the roof of the mouth form during early pregnancy. They are related, but not the same.

    Clefts vary widely in appearance and impact, and no two experiences are exactly the same.

    A baby may have only a cleft lip, only a cleft palate, or a combination of the two. These differences can affect feeding, speech, hearing, dental development, and facial growth, which is why care is typically followed over time rather than all at once.

  • It is common for parents to feel overwhelmed at the time of a cleft diagnosis. Many families have questions, and while there is a lot to learn, it helps to know that most decisions unfold gradually. You do not need a full plan right away, only next steps.

    Initial priorities may differ depending on whether the diagnosis was made prenatally or after birth, but some are shared. One of the most important is connecting with a cleft palate or craniofacial team. This team will support you and help guide decisions as they come up. Another early focus is planning for safe and effective feeding, though choices about feeding methods, bottle options, and breastfeeding can only be made once your baby is born.

    Many other decisions can wait. Long term surgical planning, future therapies, and detailed timelines do not need to be decided now. You will want to have an overview, but plans will take shape over time and may change as your child grows.

  • When a cleft is identified during pregnancy, families often appreciate having time to prepare, both practically and emotionally. This period allows space to meet members of the cleft or craniofacial team, begin learning about feeding support, and understand how care typically unfolds in the early days after birth.

    Delivery itself is usually much like any other birth. After your baby arrives, there may be a feeding specialist involved to help assess feeding and offer support as needed. When possible, our care coordinator and other members of the cleft team will also try to be present in the hospital to meet you and your baby, answer early questions, and help with next steps.

    While a prenatal diagnosis can feel daunting, it can also provide time to gather information, build support, and feel more prepared as you approach your baby’s arrival.

  • Cleft and craniofacial teams are multidisciplinary groups of specialists who work together to support your child over time. Rather than managing care in isolation, team-based care helps ensure that medical, developmental, and psychosocial needs are considered together.

    Teams often include a surgeon and care coordinator, along with speech-language pathologists, audiologists, dentists or orthodontists, pediatricians and mental health practitioners. This approach helps ensure that care extends beyond medical treatment alone and adapts as your child grows. Because cleft care unfolds in phases, relationships develop over time. The team shares guidance as it becomes relevant, and decisions are shaped through ongoing collaboration, combining clinical expertise with your family’s values, questions, and lived experience.

The Birth of your Baby

The birth of your baby is first and foremost a time of meeting, bonding, and taking in this new life. If a cleft is part of your baby’s story, those early hours and days may also include new information and practical questions. This section highlights what families commonly experience at birth, what tends to matter most in the hospital, and how to approach feeding and early preparation with clarity and support.

  • Unless your baby has medical needs unrelated to their cleft, your birth experience is typically no different than expected. Most families are not separated from their baby in the first hours after delivery. For many, the cleft itself is the only unexpected part of the experience.

    If your baby has a cleft lip only, breastfeeding is often possible, depending on their ability to form a seal.

    If your baby has a cleft palate, with or without a cleft lip, feeding may require additional support. Some families are able to breastfeed, while others use specialized bottles or nipples, either to supplement breastfeeding or as the primary feeding method. A Cleft Nurse Specialist or feeding specialist will help assess your baby and guide you in choosing the right approach.

    It is common to experience a mix of emotions in those first hours, joy, relief, uncertainty, or simply the need to take everything in. All of it is normal.

  • Before birth, it can be difficult to know exactly what your baby will need. Some babies with a cleft require specialized bottles or nipples, while others do not. This usually becomes clear only after birth, once a feeding assessment has been completed.

    Because feeding needs vary, it is best not to purchase specialized equipment in advance. Your cleft team will guide you in selecting what is needed and show you how to use it.

    If you are already planning to express milk or bottle-feed, having basic supplies on hand may be helpful. For everything else, your care team will help you make informed decisions once your baby arrives.

  • It is completely natural to want to feel prepared. When it comes to feeding, however, some decisions are best made after your baby is born.

    You may want to wait before purchasing specialized cleft feeding bottles or nipples, multiple bottle systems, large feeding kits, or extra replacement nipples designed specifically for cleft feeding.

    Each baby’s feeding pattern is unique and often cannot be determined until after birth. Purchasing specialized equipment ahead of time may result in buying items your baby does not need or cannot use comfortably.

    Your Cleft Nurse Specialist or feeding specialist will help you choose the right tools once your baby is here, so you can move forward with confidence.

  • In many cases, a member of the cleft team is notified after birth and will help coordinate early follow-up. This may include a visit from a Cleft Nurse Specialist, feeding support, or scheduling your first outpatient team appointment. For our team at Providence Saint John’s Health Center, the care coordinator will often come visit you and your family during your hospital stay, when possible.

    If your baby is born at a hospital not directly connected to your cleft team, your pediatrician or hospital staff can help coordinate referral and follow-up care. Your team will guide you through next steps and ensure that support is in place.

  • Some parents wonder how and when to share news about their baby’s cleft. There is no single right way to approach this. Some families prefer to share information right away, while others wait until they feel more settled.

    You may choose to keep explanations simple or provide more detail, depending on what feels comfortable. If helpful, your cleft team can assist you in finding language that feels clear and supportive. Over time, many families find their own rhythm in talking about their baby’s story.

What to Expect in the First Year

The first year is often a time of learning and adjustment. It includes early medical visits and new routines, but it is also a time for bonding, growth, and getting to know your baby. Below are some of experiences families commonly may encounter during the first year and what tends to matter.

  • Feeding is often the earliest and most immediate focus in the first year. Depending on your child’s cleft, feeding may require specific bottles, techniques, or guidance from specialists.

    Many families worry about whether feeding will ever feel “easy.” With the right supports, most families develop routines that work well for their baby over time.

    Although feeding challenges are common, and in some cases an expected part of the process, support is available throughout. Growth is monitored closely, and adjustments are often made along the way as your baby’s needs become clearer.

  • Some children will have one or more surgeries in the first year, while others may not. Early surgeries are often for cleft lip and, in some cases, cleft palate.

    It is very natural for families to want to map out every step, but there is no single exact timeline. Different surgeons use different approaches, and plans are shaped by your child’s individual needs because no two cleft journeys are exactly the same.

    While being informed is important, you do not need to carry the entire surgical plan on your own. Your care team will walk alongside you, guiding decisions step by step and helping you focus on what matters most right now.

    For more information about cleft lip and cleft palate surgeries, click HERE for Understanding Surgeries Across the Cleft Journey.

  • During the first year, team visits help get to know your child and establish a baseline while keeping an eye on early development. These visits usually focus on feeding and growth, hearing and ear health, early speech and oral development, and overall medical well-being. In some cases, the team may suggest additional genetic testing to better understand whether the cleft is part of a broader pattern or if there are other health considerations to keep in mind.

    Visits can feel frequent at first, but they are meant to offer support, catch concerns early, and help things feel more manageable as your child grows.

  • The emotional experience of the first year often shifts over time. Many parents feel overwhelmed by information and grieve the loss of the experience they expected. For many families, with time, things begin to feel lighter and confidence slowly grows. There is no single “right” way to feel, and emotional support, both formal and informal, can be just as important as medical care.

    Alongside support from our team psychologist and the broader care team, we have dedicated community pages for families connected with the Providence Saint John’s Hospital cleft team. These spaces are designed to help parents connect with other parents and share common questions, reflections, and lived experience.

    Family, friends, and your own trusted community also play an important role, and many families find strength in leaning on the supports they already have. If additional support feels helpful, we also offer a dedicated mental health resource page to help connect you with therapists and counseling options.

School-Age Years

As children enter school, new questions often arise, about learning, peer relationships, communication, and how much to share with teachers or classmates. For many families, this stage is less about medical care and more about helping children feel confident, supported, and understood in everyday settings. This section highlights common areas families think about during the school years and what tends to be helpful to keep in mind.

  • School introduces new social environments and expectations. Some children with cleft conditions navigate this easily, while others may become more aware of differences or feel sensitive to comments from peers.

    Helpful supports may include:

    • Talking openly and age-appropriately about differences

    • Practicing responses to questions or comments

    • Supporting confidence and self-esteem

    Social and emotional needs can shift over time, and support may be helpful at different points.

  • Most children with cleft conditions learn typically, but some may experience learning, attention, or processing differences that become more noticeable in school.

    Areas teams and families may monitor include:

    • Language-based learning

    • Attention and organization

    • Classroom participation

    Monitoring allows families and schools to respond early if supports are needed.

  • Some children benefit from school-based supports, such as speech services or classroom accommodations. These supports are meant to remove barriers to learning—not to lower expectations.

    Supports may include:

    • Speech-language services

    • Classroom accommodations

    • Collaboration between school staff and medical providers

    Not every child needs formal supports, and needs may change over time.

  • Families often wonder how much information to share with schools and when. There is no single right approach.

    Helpful considerations include:

    • Sharing what supports your child best

    • Re-visiting conversations as needs change

    • Partnering with teachers as part of the support team

    Clear communication can help ensure your child is understood in the classroom.

  • As children grow, they begin to take a more active role in understanding their care and advocating for themselves.

    Support at this stage may include:

    • Helping children explain their needs in simple ways

    • Encouraging independence while offering backup

    • Reinforcing strengths beyond medical history

    These skills often develop gradually and are revisited across the school years.

Adolescence & Growing Independence

Adolescence is a time of rapid change, physically, emotionally, and socially. For teens with cleft conditions, this stage may bring new questions about identity, independence, and the role cleft care plays in their lives. While medical care may still be part of the picture for some teens, this phase often focuses just as much on confidence, communication, and self-advocacy. This section highlights common themes families encounter during adolescence and what can be helpful to keep in mind.

  • During adolescence, growth and physical development may prompt additional monitoring or treatment for some teens, while others may require very little medical intervention during this stage.

    For some adolescents, this period includes later-stage treatments or procedures, such as jaw surgery, along with continued dental or orthodontic care. Speech or hearing may also continue to be monitored, depending on individual needs.

    Care decisions during adolescence are often more collaborative, with teens increasingly involved in discussions about timing, options, and goals. The focus shifts toward shared decision-making, autonomy, and planning for long-term outcomes.

  • Adolescence is a stage when appearance, peer relationships, and self-image often take on greater significance. Teens may think more deeply about how they look, how they are perceived by others, and how much they want cleft-related care to be part of their identity.

    Support during this time often centers on open conversations about appearance and self-worth, validating a wide range of feelings—including pride, frustration, indifference, or ambivalence, and reinforcing strengths, interests, and qualities that extend well beyond medical history.

    There is no single “right” way for teens to feel about their cleft. The goal is to create space for honest reflection while supporting confidence, autonomy, and a sense of wholeness.

  • Friendships, dating, and social belonging often become more central during adolescence. Some teens feel confident navigating these spaces, while others may need additional support, particularly if they are managing visible differences, speech differences, scars, or the possibility of revisions during these years. If revisions or orthodontic work occur during adolescence, this can also temporarily heighten self-awareness.

    Helpful support may include talking through social situations in advance, practicing responses to questions or comments, building language that feels authentic and empowering, and strengthening emotional regulation skills during moments of social stress. It can also involve reinforcing identity beyond cleft care, highlighting strengths, interests, humor, talents, and friendships.

    Social confidence tends to grow with experience, reflection, and steady support. Over time, many teens develop a stronger sense of ownership over their story and how they choose to share it.

  • As teens grow, they often begin taking a more active role in understanding their care and speaking up for themselves. Because the cleft journey can extend into adulthood, it becomes increasingly important for individuals to learn how to advocate for themselves, ask questions, and communicate their needs clearly. While this shift is never forced, it is gently encouraged over time.

    This may involve learning to explain their history in their own words, participating more directly in medical visits, expressing preferences, and practicing decision-making with the guidance of trusted adults.

    Independence develops gradually and looks different for every teen. The goal is not sudden autonomy, but steady growth in confidence, voice, and self-advocacy.

  • Adolescence is also a time to begin preparing for future transitions—whether related to medical care, education, or increased independence. This stage allows families and teens to think ahead about how care will evolve into adulthood.

    Preparation may include planning for changes in medical providers, gradually shifting responsibility for scheduling or communication, and discussing post-secondary paths such as college, work, or independent living. Teens may begin practicing skills such as tracking appointments, understanding key aspects of their medical history, and knowing when and how to seek support.

    Transitions do not need to happen all at once. They are most successful when approached step by step, with guidance, flexibility, and ongoing support.

UNDERSTANDING THE LANDSCAPE

Beyond developmental stages, it can be helpful to understand the broader structure of the cleft journey. This section offers foundational information about cleft lip and cleft palate, how surgeries are approached over time, how team care is organized, and how development intersects with treatment. The goal is to help you see the bigger picture, not just the next step.

Understanding the Bigger Picture

As the early months settle, many families begin to wonder how everything fits together over time. Questions about surgeries, development, and long-term planning often come up once the initial urgency has passed. This section offers a broader view of the cleft journey, without going into detail, so families can understand the overall arc while staying focused on the present.

  • Cleft care is typically planned across many years, not because everything is complex, but because different needs arise at different stages of development. Care is paced to support growth, speech, hearing, dental development, and overall well-being as your child grows.

    This long-term approach allows teams to:

    • Address needs at the right time

    • Avoid unnecessary interventions

    • Adjust plans as your child develops

    The journey is not a straight line, and plans often evolve along the way.

  • Surgery is one part of cleft care, but it is not the only focus, and it rarely happens all at once. Surgeries are typically spaced out and timed to support development, function, and healing.

    At this stage, it can be helpful to know:

    • There is usually a general sequence, not a fixed schedule

    • Not all children need the same surgeries

    • Timing may shift based on growth and individual needs

    Your team will guide surgical decisions when the time is right.

  • Different aspects of cleft care become relevant at different ages. For example, feeding and early growth matter most in infancy, while speech, dental development, and social experiences become more prominent later on.

    Staging care allows teams to:

    • Focus on what matters most at each age

    • Monitor progress over time

    • Respond to changes rather than rushing decisions

    This approach supports both medical outcomes and overall development.

  • Because cleft care spans many years, coordinated team care helps ensure continuity. Team members communicate with one another and with families to align recommendations and avoid fragmented care.

    Over time, families often find that team visits:

    • Help connect the dots between different areas of care

    • Offer reassurance about progress

    • Provide space to ask bigger-picture questions

    You are not expected to hold the full roadmap alone. Your team helps carry it with you.

  • It’s natural to want to know what lies ahead, but it’s also okay to focus on what’s happening now. Many families find that it helps to hold the big picture lightly, as a guide, not a checklist.

    Understanding the overall journey can offer reassurance, even while day-to-day care stays centered on the present stage.

  • Some clefts occur on their own, while others are associated with genetic conditions or syndromes. For many families, hearing the word genetics can raise concern or confusion.

    Genetic evaluation, when recommended, is intended to:

    • Better understand why the cleft occurred

    • Identify any additional medical considerations

    • Help guide follow-up care and monitoring

    Importantly, a cleft diagnosis does not automatically mean there is an underlying syndrome. Many children with clefts are otherwise healthy and develop typically. Genetic counseling is about gathering information—not assuming outcomes.

Understanding Surgeries Across the Cleft Journey

Surgery is one part of cleft care, but it does not happen all at once or follow a single path for every child. This section offers an overview of surgeries that may be discussed at different points in the cleft journey.

The goal is orientation, not detailed planning. As mentioned earlier, different surgeons have different typical timelines. Also, your care team will guide decisions based on your child’s individual needs and development.

  • When a cleft lip is present, cleft lip repair is often one of the earliest surgeries discussed. This procedure typically takes place between about 3 and 6 months of age, though the exact timing can vary. The goals are to support feeding, early facial development, and appearance.

    Surgery is usually planned once a baby is big enough and strong enough for general anesthesia, often around 10–12 pounds or roughly 3 months of age. This timing allows for early facial growth while also helping to minimize scarring. During the procedure, the lip is closed, the muscles are carefully repositioned, and the nose is often reshaped at the same time.

    In the weeks leading up to surgery, some families may be introduced to presurgical supports such as taping or nasoalveolar molding (often called NAM). These approaches can help bring the lip and gum segments closer together before surgery, though they are not needed or recommended for every child.

    Cleft lip repair is most often a day surgery, though some children stay one night in the hospital. Your care team will walk you through what to expect and help you prepare when the time comes.

    It is also important to know that not all children have a cleft lip, and not all cleft lip repairs look the same. Surgical plans are individualized, based on your child’s specific anatomy, needs, and development.

  • Cleft palate repair is typically discussed later in the first year of life. If cleft palate is present, this surgery often takes place between about 9 and 12 months of age, though timing can vary. The timing is chosen carefully to support early speech development while allowing the tissues of the palate to grow. During the procedure, the opening in the palate is closed and the muscles are repositioned to help support typical speech and swallowing.

    Before surgery, families may meet with members of the care team, such as a speech-language pathologist or surgeon, to talk through feeding, speech expectations, and what recovery may look like. These conversations are meant to help families feel prepared and supported, even though details may continue to evolve over time.

    Cleft palate repair usually involves a short hospital stay, often one to two nights, to allow for monitoring, pain control, and feeding support after surgery. Your care team will guide you through what to expect before, during, and after the hospital stay.

    It is also important to know that not all children have a cleft palate, and not all cleft palate repairs look the same. Surgical plans are individualized, based on your child’s anatomy, development, and overall needs.

  • Children with a cleft palate are more likely to experience fluid buildup in the ears or differences in hearing, so some children may need ear tubes placed at different points during childhood. In some cases, ear tubes may be needed more than once as children grow.

    These procedures are done to support hearing, reduce problems related to fluid in the ears, and help protect speech and language development. Ear-related surgeries are common in children with cleft palate and are often revisited over time as needs change.

    Whenever possible, our team works to coordinate ear tube placement with other planned surgeries. This helps minimize the number of times a child is under anesthesia and can make planning and recovery easier for families.

    As with other aspects of cleft care, decisions about ear tubes are individualized. Your care team will monitor hearing closely and guide recommendations based on your child’s development and needs.

  • An alveolar bone graft is a procedure that may be recommended for some children as permanent /adult teeth begin to develop. The goal is to provide bone support in the upper jaw, helping to guide tooth eruption and support dental and facial development.

    This surgery is most often discussed during the school-age years and is typically planned in close coordination with orthodontic care. Timing is individualized and based on dental development rather than age alone, which means plans may look different from one child to the next.

    In some cases, an alveolar bone graft may be needed more than once, depending on growth and how the bone and teeth develop over time. Your care team will monitor this closely and guide recommendations as your child grows.

    It is also important to know that not every child requires an alveolar bone graft. As with other surgeries, decisions are made thoughtfully and tailored to your child’s specific anatomy, development, and overall treatment plan.

  • Many individuals with cleft conditions do not require orthognathic (jaw) surgery, but for some it may be discussed if jaw growth or alignment affects bite, facial balance, or function. Because this surgery is considered much later in development, some families are surprised to learn it may still be part of the conversation after earlier surgeries are complete.

    As a team, we try to strike a careful balance, sharing enough information to help families feel informed and prepared, without creating unnecessary worry. This can be especially delicate with orthognathic surgery, since many families will never need it. At the same time, introducing the possibility early allows families and teens time to understand it gradually, rather than feeling caught off guard if it becomes relevant later.

    When orthognathic surgery is part of a care plan, it is considered later in development and planned in close coordination with orthodontic care. Many factors are taken into account, including facial and jaw growth, dental alignment, and individual anatomy. Growth patterns vary widely from person to person, and often differ between males and females, so timing and planning are highly individualized.

    Families work closely with the full care team over time, with support before surgery, careful coordination during planning, and guidance throughout recovery. Decisions are made thoughtfully, with your child’s development, well-being, and family needs at the center.

  • Some children or teens may consider additional or revision surgeries over time, while others may not. These procedures are typically discussed when there are opportunities to further support function, comfort, or appearance, and they are always guided by individual needs and goals.

    In the context of cleft care, a lip revision may be considered to refine the appearance or movement of the lip as a child grows, or to address changes that become more noticeable over time. Some individuals may also explore rhinoplasty or other nasal surgeries, which can help improve breathing, nasal structure, or symmetry, and in some cases both function and appearance.

    These conversations often unfold gradually and are revisited at different stages of development. Decisions are made collaboratively, with input from the care team, the family, and when appropriate, the child or teen. Importantly, there is no expectation that every possible surgery is necessary. The focus remains on supporting well-being, function, and confidence in ways that feel right for each individual.

Ongoing Developmental Considerations

Certain aspects of cleft care are revisited over time rather than addressed once. These areas are monitored across development to support growth, communication, health, and overall well-being. Not every child will experience challenges in all of these areas, and needs may change as your child grows. This section highlights common areas teams pay attention to over time and what families often find helpful to keep in mind.

  • Ongoing development is closely monitored for children with cleft conditions, with speech and language often playing an especially important role. Some children benefit from speech-language therapy at different points, while others may not need intervention at all. Speech needs can change over time and are often revisited as a child grows or after surgeries that affect the anatomy involved in speech.

    We frequently encourage speech evaluations and therapy through a family’s local school district, as these services are often available at no cost through an Individualized Education Program (IEP). School-based supports can be an important part of care, and more information about these options can be found in our developmental section. At the same time, some children benefit from more specialized speech-language therapy beyond what is offered in schools, particularly when needs are more complex.

    Speech-language pathologists who work with children with cleft conditions are trained to look beyond what is easily noticeable. They assess and support many aspects of communication, including feeding and swallowing, sound production and articulation, resonance, clarity of speech, and how well speech is understood by others. These are areas that may not always be obvious to families or teachers but can have a meaningful impact on communication.

    Early identification and support, when needed, can make a significant difference over time. Because speech and language skills evolve, and because surgeries can change the structures involved in speech, ongoing monitoring allows care to be adjusted thoughtfully, with the goal of supporting clear communication and confidence as children grow.

  • Dental care often begins early in childhood and remains important throughout development. Because of the complexities of cleft care, many families find it helpful to work with pediatric dental specialists who have experience caring for children with cleft conditions. Good dental hygiene is especially important, as teeth may come in at different angles or positions, which can make them harder to keep clean.

    Differences in tooth placement or spacing may mean families need extra guidance with brushing, flossing, and routine dental care. Some children are also more sensitive to dental visits or having their mouth examined, given how many early medical appointments focus on the mouth. Working with a dental provider who understands these experiences can help make dental care feel more comfortable and supportive over time.

  • Orthodontic care is a separate specialty from dentistry and is usually introduced later in childhood or adolescence. Orthodontists focus on guiding tooth alignment rather than routine dental health. Because teeth may come in at different angles or positions, orthodontic care can help adjust alignment in ways that support both function and long-term oral health.

    Orthodontists also play a key role in understanding and monitoring jaw growth. For some individuals, orthodontic planning is closely tied to broader facial development and is an important part of preparing for, or coordinating with, jaw surgery when that is part of the care plan. This work unfolds gradually and is carefully timed with growth.

    As with other aspects of cleft care, orthodontic needs are addressed in stages and tailored to each child’s development. Orthodontists are part of our care team, and your child will be checked during clinic visits to help determine if and when orthodontic care becomes relevant and how it fits into the larger picture of care over time.

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    Just as there are important medical, speech, and dental needs, social and emotional experiences are a meaningful part of the cleft journey. As children grow, they may become more aware of differences in appearance, speech, or medical history, often at predictable moments, such as when entering school, navigating friendships, or moving into adolescence.

    Emotional needs can look different at different ages. Some children may need support building confidence and resilience, while others may benefit from help navigating questions or comments from peers. At times, children and teens may need space and guidance to express feelings that are harder to name, especially as social worlds expand and expectations change. Families often find that having conversations early, normalizing a range of feelings, and knowing where to turn for support can make a meaningful difference over time.

    We are continuing to build dedicated sections of this website focused on psychosocial support, including community connections and trusted providers who understand the cleft experience. These resources are designed to support children, teens, and families, whether needs are small and momentary or more sustained, so that no one has to navigate this part of the journey alone.

  • As already discussed, children with cleft palate are more likely to experience ear fluid or changes in hearing, particularly in early childhood. Regular hearing checks are encouraged to help ensure hearing continues to support communication and learning. Families are encouraged to keep a close eye on hearing and, when possible, to work with an ENT who understands cleft-related needs. Many hearing differences are temporary and improve with monitoring and appropriate treatment.

  • Some children with cleft conditions may have additional medical or developmental needs, while others may not. Monitoring helps teams respond early if concerns arise.

    This may include:

    • Developmental screenings

    • Coordination with other specialists

    • Adjusting care plans as needed

    Monitoring is intended to support early understanding, not to assume difficulties.

Understanding Team Visits

Cleft and craniofacial care is often delivered through team visits, where multiple specialists come together to support your child over time. For families, these visits can feel reassuring, overwhelming, or both, especially early on.

Understanding the purpose of team visits can help them feel more manageable and meaningful. This section explains what team visits are, how often they happen, and why they play an important role in long-term care.

  • A team visit brings together specialists from different areas of care to look at your child’s development as a whole. Rather than seeing providers separately, the team collaborates to align recommendations and timing.

    Depending on your child’s needs, team members may include surgeons, speech-language pathologists, audiologists, dentists or orthodontists, psychologists, and care coordinators.

  • The frequency of team visits evolves over time. Appointments are typically more frequent in infancy and early childhood, and less frequent during periods of stability.

    Visits tend to occur more regularly in the early years, around key developmental transitions, and whenever new questions or concerns arise.

    The goal is not constant monitoring, but thoughtful, coordinated check-ins at meaningful points along the way.

  • Team visits help ensure that care remains coordinated and responsive as your child grows. Because cleft care unfolds over time, these visits allow the team to monitor development across multiple areas, anticipate upcoming needs, and adjust plans based on your child’s progress.

    They also provide an opportunity to address small concerns early, before they become larger challenges. Even during periods when everything is going well, team visits offer reassurance, guidance, and a sense of what may be coming next so families can move forward feeling informed and prepared.

  • Team visits typically involve brief check-ins with several specialists rather than a long appointment with a single provider. The pace can feel busy, but the structure is designed to be efficient, collaborative, and centered around your child’s needs.

    Families are encouraged to ask questions, share observations, and bring up any changes they’ve noticed at home, at school, or socially.

    Some families find it helpful to prepare a short list of questions or topics in advance, especially if appointments tend to feel full or fast-paced. Preparation might include noting recent changes or concerns, thinking ahead to upcoming transitions such as school or growth milestones, and identifying what feels most important right now.

    Even a small amount of preparation can help the visit feel more focused, intentional, and less stressful.

  • You don’t need to wait for a team visit to reach out. Questions often arise between scheduled appointments, and teams expect and welcome that communication.

    If new concerns emerge, something changes unexpectedly, or you simply need clarification or reassurance, it is entirely appropriate to contact the team. Care is ongoing and collaborative, not limited to the time spent in appointments.

Things to Keep in Mind Over Time

Every child with a cleft is different. Many children do very well, especially with the support of a cleft care team. Depending on the type and extent of a child’s cleft, some areas may need a little extra attention over time.

  • Feeding is often the first thing families think about after birth and it can look different from baby to baby. Many babies with a cleft lip feed well and are able to breastfeed, while babies with a cleft palate may need extra support with suction or swallowing. Feeding specialists are experienced in helping families find approaches that work well for their baby.

    Occasionally, milk or food may come out of the nose, which can be surprising but is something specialists are very familiar with.

  • Because the palate plays a role in making sounds, some children with a cleft palate need support as speech develops. Differences in speech, including a nasal quality, are common and often very responsive to therapy.

    Speech therapy is a common, and often expected, part of care for many children with a cleft palate. This support may continue over time, sometimes for reasons that are not obvious early on. Working with specialists familiar with cleft-related speech helps ensure progress is supported at each stage.

  • Children with a cleft palate are more likely to have fluid build-up in the middle ear, which can affect hearing. For this reason, hearing is monitored closely throughout childhood.

    Ongoing care with providers who know your child helps ensure hearing concerns are addressed early.

  • If a cleft involves the upper gum, teeth may come in differently or need extra dental or orthodontic care. This is something cleft teams plan for and monitor as children grow.

    Pediatric dentists and orthodontists who work with cleft teams help guide care as children grow.

  • Like many children with visible or medical differences, some children with clefts may face social or emotional challenges at different stages. Support from family, schools, and care teams plays an important role in building confidence and resilience.

    Having a team that knows your child over time allows support to evolve as their needs change.

Not every child will experience all of these areas, and most challenges are anticipated, monitored, and addressed early by experienced cleft teams.

Getting Support

Children with cleft lip and palate, as well as their family members, often face unique emotional, social, and developmental challenges. During clinic visits, our mental health providers met with families to learn about each family's journey, better understand their needs, answer questions, and offer supportive guidance. Although the clinic has closed, support is still available. See below for cleft and craniofacial support groups, our affiliated therapists, and our master list of therapists for continued guidance for your child, yourself, and your family.

Cleft and Craniofacial Support Groups

These support groups offer a welcoming space for individuals and families to connect, share experiences, and find support around the medical and life challenges associated with cleft and craniofacial conditions.

Lived Experience Support Groups

  • Cleft Connect Chat
    Monthly virtual peer group for teens through university students with cleft conditions, focused on connection, communication skill-building, and peer support, facilitated by adults with lived experience. Offered in English and Spanish.

    To join, go to website and click on “register for a chat”: https://www.operationsmile.org/make-an-impact/student-programs/cleft-connect-chat/

    Contacts:
    Brigette Clifford, AVP of Operation Smile Student Programs
    Email: brigette.clifford@operation smile.org
    Ph: (757) 412-8500

    Ethan Richlak, student volunteer
    Email: ethan.richlak@intern-operationsmile.org
    Ph: (440) 867-8144

  • MyFace Support groups: https://www.myface.org/online-groups/
    For more information, email Dina Zuckerberg: Dina@myFace.org

    Drama Therapy Group For Youth
    A small, monthly youth group (ages 10-14 years old) focused on creative expression and emotional exploration through role-play, storytelling, and improvisation in a supportive, small-group setting.

    Adolescent Support Group:
    Monthly peer support group for adolescents ages 14–18 with craniofacial conditions, offering facilitated discussion around stress, coping, emotions, peer dynamics, and disclosure, along with interactive games.

    Adult Support Group:
    Biweekly peer support group for adults (18+) with craniofacial conditions, focused on shared experiences, relationships, career concerns, emotional regulation, and navigating care in adulthood.

Parent Support Groups

  • Cleft Connect Parent Chat
    Monthly virtual peer support group for parents of children with cleft conditions, focused on sharing experiences, practical advice, and mutual support, with guidance from experienced parent mentors.

    To join, go to website and click on “register for a chat”: https://www.operationsmile.org/make-an-impact/student-programs/cleft-connect-chat/

    Contacts:
    Brigette Clifford, AVP of Operation Smile Student Programs
    Email: brigette.clifford@operation smile.org
    Ph: (757) 412-8500

    Ethan Richlak, student volunteer
    Email: ethan.richlak@intern-operationsmile.org
    Ph: (440) 867-8144

  • MyFace Support groups: https://www.myface.org/online-groups/
    For more information, email Dina Zuckerberg: Dina@myFace.org

    Prenatal and Infant Parent Support Group
    Monthly peer support group for expectant parents and parents of infants (up to age 1) with craniofacial conditions, offering facilitated discussion around diagnosis-related concerns, preparing for a baby’s arrival, navigating early medical care, stress management, emotional regulation, and family dynamics in a supportive setting.

    Parent Support Group
    Peer support group for parents of a child with a craniofacial condition, offering facilitated discussion around parenting challenges, supporting a child with a facial difference, sibling and family dynamics, emotional regulation, stress management, and effective communication in a supportive setting.

    Grupo de apoyo para padres españoles
    Grupo de apoyo para padres hispanohablantes de niños con una diferencia craneofacial, que ofrece un espacio seguro con conversaciones guiadas sobre la crianza, el apoyo a los hijos y hermanos, la dinámica familiar, la regulación emocional, el manejo del estrés y la comunicación efectiva, con el acompañamiento de un facilitador de habla hispana.