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CLEFT CARE

The Cleft Journey

Cleft care unfolds over time. You do not have to figure it all out at once.

This page is a starting point, not a full guide: a brief orientation to the early years… diagnosis, birth, the first year, surgeries, and the care that continues after. Come back to it as you need; you don't have to take it all in now.

For Kids, Teens & Young Adults

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.

Starting the Journey

A cleft diagnosis can bring a lot of new information, questions, and emotions, and it’s very common to feel overwhelmed at first. It may feel like there is so much to learn and that you need to figure everything out right away. You don’t. Only a few things really need your attention in these first days. The rest will come into focus with time, and your cleft team will help guide you along the way.

  • 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.

    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. 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 diagnosis can quickly lead to questions about feeding, surgery, speech, dental care, and what life may look like years from now. It is helpful to understand the general roadmap, but you do not need to make every decision now.

    Early priorities are usually much simpler: connect with an experienced cleft or craniofacial team, prepare for feeding support if needed, and understand what will happen in the first few weeks and months.

    Many of the decisions families worry about early on will not need to be made for years, and plans may change as a child grows.

  • Cleft and craniofacial care is best provided by a multidisciplinary team, with specialists such as a surgeon, care coordinator, speech-language pathologist, audiologist, dentist or orthodontist, pediatrician, and mental health provider working together over time rather than managing different pieces of your child’s care separately. That coordination matters: good decisions bring together expertise across specialties with your family’s priorities and what you’re seeing at home.

    If you’re just starting this process, your pediatrician or delivering hospital can help connect you with a team near you. It’s also worth looking specifically for an ACPA-approved team. ACPA approval indicates that a team meets established standards for coordinated, interdisciplinary cleft and craniofacial care, rather than care being centered around a single provider or specialty.

    For a list of teams in the L.A. area and information on how to search more broadly, see Find a Multidisciplinary Team on the main Cleft Care page.

  • A cleft diagnosis on its own doesn't mean there's an underlying syndrome. Most children with cleft are otherwise healthy and develop typically; however, some are associated with a broader genetic condition.

    If your team recommends genetic evaluation, that's about understanding the full picture and guiding follow-up care, not a sign that something else is wrong.

Welcoming Your Baby

As you get closer to your baby’s arrival, or navigate the first days after an unexpected diagnosis, there are a few things that can help you feel more prepared.

  • Unless there are other medical concerns, delivery itself usually looks much like any other birth. A cleft may be an unexpected part of your baby’s arrival, but it doesn’t have to define it. In many cases, babies can remain with their parents after delivery and receive routine newborn care. Babies with a cleft lip only may be able to breastfeed, depending on the seal they can form; babies with a cleft palate more often need additional feeding support. Ask your hospital whether a cleft or craniofacial team member can meet with you before you’re discharged.

    Just like with the birth of any baby, you may feel joy, relief, uncertainty, or several things at once. There’s no particular way you’re supposed to feel.

  • It’s tempting to stock up before your baby arrives, but the feeding approach that works best will depend on your baby’s cleft and how they feed after birth. Even babies with similar clefts can have different needs. Rather than buying a large supply of specialized bottles, nipples, or feeding equipment ahead of time, wait for guidance from your cleft or feeding team. They can help you find the system that works best for your baby.

    This is one of those times when having less on hand may actually be more helpful , and can save you money on equipment you may never need.

  • There’s no single right way to do this. Some families share right away; others wait until they’ve had time to take everything in themselves. What you say can be as simple or as detailed as feels right, and there’s no obligation to explain more than you want to.

    You can also decide who you want to tell yourself and when it might be helpful to let someone else share updates for you. Over time, most families find their own rhythm for talking about their child’s cleft, and it often gets easier with practice.

THE FIRST YEAR

The first year can be one of the busiest parts of the cleft journey. Alongside all the ordinary adjustments of having a new baby, you may be learning about feeding, meeting new specialists, and moving from appointments to surgical planning, recovery, and then preparation for the next step. It can sometimes feel like you’ve barely adjusted to one milestone before another arrives.

There is no single timeline, and you may find that other families are doing things differently or at different ages. That variation is common and may depend in part on your cleft team’s typical protocols and surgical approach, as well as your child’s individual needs. Once the early surgeries are behind you, the pace often changes, with more space between medical milestones to simply focus on your child.

  • There isn’t one universal timeline for cleft surgery. Experienced cleft teams and surgeons may recommend different timing or approaches, particularly for palate repair, based on their surgical protocols, techniques, and experience, as well as your child’s individual needs. A different timeline doesn’t necessarily mean one team is right and another is wrong.

    What matters is understanding the plan for your child. Ask your surgeon when they recommend surgery, why they prefer that timing and approach, and what factors might cause the plan to change. If what you’re hearing differs from something you’ve read or from another family’s experience, ask about that too. Those are appropriate and important questions.

  • As you prepare, it can help to ask your team what to expect with feeding before and after surgery, how pain and wound care will be managed, what supplies you actually need at home, and who to call with questions after you’re discharged.

    It’s also worth preparing for something that may be less expected: parents can be excited about the repair and, at the same time, surprisingly emotional about saying goodbye to the face they’ve fallen in love with. Both feelings can exist at once, and many cleft families understand that experience well.

  • Palate repair can feel different from lip repair because much of the surgery and healing isn’t visible from the outside. Knowing what recovery may look like, including changes in eating, drinking, sleep, and comfort, can make those first days at home feel a little less unfamiliar.

    Ask your team what to expect with feeding after surgery, which cups, bottles, or utensils can be used, and what to anticipate with diet, sleep, pain, and comfort during recovery. Recommendations vary by surgeon and surgical technique, so your own team’s instructions should guide you.

WHAT COMES AFTER

Even after the early surgeries, most cleft teams continue to see children annually or periodically, sometimes well into their teens. It’s easy to wonder why, especially once things feel stable. But some of the things a cleft team is watching for aren’t necessarily obvious. Changes in speech, resonance, or hearing, for example, may be subtle and benefit from specialists who understand what to watch for in children with cleft. Dental and orthodontic needs also evolve as your child grows, and monitoring that development helps make sure the right pieces are in place at the right time for care or procedures that may come later.

Staying connected also helps keep the longer-term plan from getting lost. Something relatively straightforward to identify or address at 7 can become more complicated at 12 simply because no one was tracking it in between. Depending on your child’s cleft, later care may include additional procedures or revisions and, for some children, jaw surgery. Regular team visits help you understand what may be ahead and prepare for it, rather than being caught off guard.

Annual visits can feel like a lot when your calendar is already full and your child is doing well. But they’re also part of how “doing well” stays true.

  • Speech and language get close attention because cleft can affect them in ways that aren’t always obvious from the outside. Some children need speech-language therapy at some point; others never do, and needs can change over time.

    School-based speech services, including those provided through an IEP, can be an important source of ongoing support when a child qualifies; however, a speech-language pathologist with expertise in cleft care evaluates things that may not be part of a routine speech assessment, including resonance and nasal airflow during speech. Cleft-team speech evaluations serve a somewhat different role: monitoring for cleft-specific speech patterns and helping determine whether a concern is best addressed through therapy, continued monitoring, or further evaluation by the cleft team.

  • Dental care deserves some extra attention for children with cleft. Teeth near the cleft may come in differently, be missing or crowded, or be positioned in ways that make brushing and flossing more challenging. Your child may need a little more help with oral hygiene for longer than you’d expect.

    A pediatric dentist familiar with cleft care can also be especially helpful. After years of appointments focused on the mouth and face, some children understandably become sensitive about oral exams. A provider who understands that history can help make dental visits feel more comfortable and routine.

  • Orthodontic care is often an integral part of cleft treatment, not simply a matter of straightening teeth. For many children, orthodontic treatment is needed to prepare the teeth and jaws for other parts of care. For example, orthodontics may be coordinated with an alveolar bone graft during the school-age years, and later, if jaw surgery is needed, the teeth and jaws typically need to be carefully aligned before surgery can take place.

    The timing and sequence of orthodontic treatment depend on your child’s cleft, dental development, jaw growth, and the procedures that may be planned. This is one reason ongoing coordination between your cleft team, orthodontist, and surgeon is so important: orthodontic care is often part of preparing for what comes next, not a separate step that happens alongside it.

  • Children with a cleft palate are more likely to develop fluid in the middle ear, particularly when they’re young, which can temporarily affect hearing. Regular hearing checks help identify changes early, which is important because hearing is closely connected to speech, language, communication, and learning.

    Some children need ear tubes or other treatment, while others need only monitoring. Your cleft team and audiologist or ENT will guide follow-up based on your child’s needs.

  • The school years and adolescence bring different kinds of questions, friendships, self-image, talking (or not talking) about cleft, navigating school and social situations, and gradually taking more ownership of care.

    Some of the best guidance for this stage comes from young people who have actually lived it. Growing Up with Cleft brings together real questions, experiences, and perspectives from teens and young adults with cleft, in their own words. If you’re parenting through these years, or your child is beginning to ask these questions themselves. we’d encourage you to explore it together.

Surgical Timeline

First Year of Life

Early Childhood - Early Adulthood

UNDERSTANDING SURGERIES ACROSS THE CLEFT JOURNEY

Surgery is one part of cleft care, but it doesn’t happen all at once, and not every child needs every procedure below. This section is here for when you want more detail about a specific surgery, what it involves and roughly when it may happen, not as a treatment plan.

Timing and approach vary by surgeon, team protocol, and your child’s individual needs, so think of these as general patterns rather than a fixed schedule. (For the practical and emotional side of preparing for lip or palate repair specifically, see The First Year.)

  • Usually one of the first surgeries discussed, cleft lip repair is often performed within the first several months of life. The surgery closes the lip and reconstructs the underlying muscle, restoring the lip’s form and function; the nose may also be reshaped at the same time. Some babies use presurgical supports such as taping or nasoalveolar molding (NAM) beforehand to help shape and position the tissues before surgery, though not every baby needs this step.

    It's typically same-day surgery, though some children stay one night for observation.

  • Palate repair is often performed toward the end of the first year of life, although some cleft teams routinely operate earlier. There isn’t one universally agreed-upon age: timing can reflect a surgeon’s preferred technique and team protocol, including how they balance considerations related to speech development and facial growth.

    The surgery closes the opening in the roof of the mouth and repositions the muscles of the soft palate so they can function more normally for speech and swallowing.

    Because approaches and timing differ among experienced cleft surgeons, ask your surgeon when they recommend palate repair and why they prefer that timing and technique. Your surgeon can explain the thinking behind the approach they use and what it means for your child.

  • Children with a cleft palate are more prone to fluid buildup in the middle ear, so ear tubes are a common procedure, sometimes more than once, as a child grows. The placement of ear tubes help ventilate the middle ear and can improve hearing when persistent fluid is causing conductive hearing loss; maintaining adequate hearing supports speech/language development.

    When possible, teams often coordinate ear tube placement with another scheduled surgery, so your child isn't put under anesthesia more times than necessary.

  • Usually planned during the school-age years, an alveolar bone graft places bone into the cleft in the gumline (alveolus), creating support for the developing permanent teeth and continuity of the upper dental arch.

    Timing of this procedure is based more on dental development than chronological age, particularly the development of the permanent teeth near the cleft, and orthodontic treatment is often an important part of preparing for the procedure.

  • Many people with a cleft never need jaw surgery. For some, differences in how the upper and lower jaws grow become more apparent over time and can affect the bite, facial balance, or function. When jaw surgery is needed, it is typically planned after most facial growth is complete, often in the later teen years or young adulthood.

    Because this possibility can surface many years after the early cleft surgeries, families are sometimes caught off guard to learn that another significant procedure may still be part of the longer-term plan. This is one reason continued monitoring of facial and jaw growth through the cleft team is important.

    Orthodontic treatment is an essential part of preparing for jaw surgery. The teeth need to be carefully positioned so that the jaws can be moved into the planned alignment during surgery, which means orthodontic treatment often begins well before the operation itself. Your cleft surgeon and orthodontist plan these stages together, with timing based on growth and the overall treatment plan.

  • Some children need or consider additional procedures as they grow. These may include surgery to improve speech if the palate isn’t functioning adequately, revision of an earlier repair, or nasal surgery to improve breathing or function. Others need few or no additional procedures beyond the primary repairs.

    As children reach the teen years, there may also be options to address appearance. For example, changes to the lip, scar, or nose that become more noticeable with growth or that the young person would like to change. These procedures are different from surgeries needed for function, and there is no expectation that every available revision needs to be done. As your child gets older, their own feelings about their appearance and whether they want another procedure become an increasingly important part of the decision.

WHERE TO GO NEXT

For years, our team had the privilege of getting to know families over time — checking in as children grew, answering new questions as they came up, and helping families navigate not only cleft care, but some of the emotional, social, and developmental experiences that can come with it. Although our clinic has closed and we can no longer provide that same ongoing follow-up, we want families to continue to have places to turn for information, support, and connection.

Here are a few resources to help you find what you need next:

Growing Up with Cleft

Real questions about growing up, friendships, appearance, school, self-advocacy, and more, answered by teens and young adults with cleft, in their own words.

GROWING UP WITH CLEFT

Ongoing Cleft Care & Resources

Find information about our former team members, including affiliated mental health providers, and options for continuing cleft and craniofacial care in the L.A. area.

OUR CLEFT TEAM

Support & Connection: Cleft and Craniofacial Support Groups

Connecting with others who understand the cleft and craniofacial experience can be valuable for both individuals and families. The organizations below offer opportunities to connect with others, share experiences, ask questions, and find support around both the medical and everyday parts of living with cleft or a craniofacial condition.

These groups and resources are provided by outside organizations and are not affiliated with or maintained by our former clinic. Programs, meeting information, and links may change over time.

Lived Experience Support Groups

Parent Support Groups

  • Cleft Connect/ Operation Smile

    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.

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