cleft Lip

Cleft lip and plate is one of the most common congenital anomalies in the world and on average 1 in every 500-750 live birth results in a cleft. Center for Disease Control (CDC) recently estimated each year in the United States about 2650 babies are born with cleft palate and 4,440 babies are born with cleft lip with or without cleft palate. Treatment of patients with cleft lip and palate is complex and requires a multidisciplinary team with several treatment interventions. Proper sequencing and timing of orthodontic and surgical treatment are important for successful long-term outcomes.

Hearing that your baby has been diagnosed with a cleft lip during an ultrasound can feel overwhelming. As an expectant parent, it’s natural to experience a mix of emotions—concern, uncertainty, and worry about what lies ahead. But take comfort in knowing that with the right information, support, and care, your baby can thrive and lead a healthy, happy life. You are not alone on this journey, and there are many resources and experts ready to guide you every step of the way

Understanding Cleft Lip

A cleft lip is a congenital condition that occurs when the tissues of the upper lip do not fully join together during pregnancy. This can result in a small notch in the lip or a larger gap that extends into the nose. Cleft lip can occur on one side (unilateral) or both sides (bilateral) and can range in severity.

While a cleft lip may seem daunting, it’s important to remember that it is a treatable condition. With modern medical advances, most babies born with a cleft lip undergo successful surgeries and other therapies to repair the condition.

Your Next Steps

1. Seek Support

One of the first things you should do is find support from healthcare professionals and organizations specializing in cleft care. Your obstetrician will likely refer you to a specialized cleft team, which may include plastic surgeons, orthodontists, speech therapists, and other specialists who can guide you through the process.

It’s also beneficial to connect with other parents who have gone through similar experiences. Online communities, local support groups, and organizations like the American Cleft Palate Craniofacial Association and myFace are valuable resources where you can share your feelings, ask questions, and receive encouragement.

2. Educate Yourself

Knowledge is empowering. Take time to learn about cleft lip, the treatments available, and what you can expect moving forward. Understanding the condition and the treatment options will help you feel more in control and better prepared for what lies ahead.

Reach out to your local cleft team and they will offer comprehensive resources to help you understand the different stages of care, from prenatal counseling to post-surgery follow-up. Your cleft team goal is to ensure you have all the information you need to make informed decisions for your baby.

3. Prepare for Your Baby’s Arrival

Knowing your baby’s condition in advance gives you the advantage of preparing for their arrival. Your cleft team will work with you to develop a treatment plan tailored to your baby’s needs. This may include prenatal consultations, feeding techniques, and discussions about surgical options.

It’s also important to consider the emotional aspect of this journey. Allow yourself to process your emotions and seek support when needed. Remember, it’s okay to feel a mix of emotions during this time.

Treatment Options

The primary treatment for cleft lip is surgery, which typically takes place within the first few months of your baby’s life. The surgery is designed to close the gap in the lip and restore normal function and appearance. Depending on the severity of the cleft, your baby may require additional surgeries or therapies as they grow.

In addition to surgery, other treatments may include:

Presurgical Infant Orthopedics: These are devices or techniques used before surgery to guide the growth of your baby’s facial structures.

Feeding Therapy: Some children with cleft lip may need feeding therapy to help them feed.

Ongoing Care: Your cleft team will monitor your child’s development over time to ensure they receive the best care at every stage.

You Are Not Alone

It’s natural to feel anxious about your baby’s diagnosis, but remember that cleft lip is a common condition, and many families have successfully navigated this journey. Advances in medical technology and specialized care mean that your baby can have a bright future ahead.

Your cleft team will support you every step of the way. Your team of experts is dedicated to providing compassionate care and the best possible outcomes for your child. Please don’t hesitate to reach out to them for guidance, resources, or just someone to talk to.

Final Thoughts

Receiving a cleft lip diagnosis can be an emotional experience, but with the right support and care, you can feel confident in your ability to provide the best possible start for your baby. Take things one step at a time, and know that you have a community of professionals and other parents ready to support you.

Your baby’s journey is just beginning, and with love, care, and expert treatment, they can thrive. Please reach out to the ACPA approved cleft team in your area and they will help you every step of the way.

There are five types of cleft lip

Forme fruste or microform cleft lip: A small indentation on one or both sides of the lip

Incomplete unilateral cleft lip: A separation on one side of the lip that does not extend into the nose

Complete unilateral cleft lip: A separation on one side of the lip that extends up into the nose and typically involves the gum ridge and palate

Incomplete bilateral cleft lip: A separation on both sides of the lip that do not extend into the nose

Complete bilateral cleft lip: A separation on both sides of the lip that extend up into the nose and typically involve the gum ridge and palate

There are three types of cleft palate

Incomplete cleft palate: Separation at the back on the roof of the mouth, called the soft palate

Complete cleft palate: Separation at the front and back on the roof of the mouth, called the soft and hard palates

Submucous cleft palate: Separation of the muscles within the soft palate but mucous membrane is closed.

Presurgical therapy refers to interventions and treatments provided to an infant with a cleft lip and/or palate before their primary surgical repair. The goal is to reduce the severity of the cleft, align the facial structures, and optimize conditions for a successful surgical outcome.

Key Presurgical Therapy Options

1. Lip Taping

What It Is: Lip taping involves placing adhesive tape across the cleft lip to help bring the two sides of the lip closer together.

How It Works: Gentle pressure applied by the tape encourages the tissues to move closer.

Benefits: Simple, non-invasive, and can reduce the gap in the lip and gums.

Disadvantages: Does not address nasal deformities.

2. Nasoalveolar Molding (NAM)

What It Is: A custom-fitted appliance designed to gradually move the gums and nasal tissues into a more favorable position.

How It Works: The appliance is worn continuously in the baby’s mouth and adjusted weekly by the orthodontist. Over time,

Benefits: Provides better control for aligning the gums.

Disadvantages: Requires an impression within the first week of life, weekly adjustments, and may cause oral sores or feeding difficulties initially.

3. Latham Appliance

What It Is: A surgically placed device used to align the segments of the upper jaw in infants with cleft palate.

How It Works: The appliance uses a screw mechanism to gradually move the cleft segments closer.

Benefits: Aligns the gums more quickly than NAM.

Disadvantages: Requires anesthesia for placement in the operating room and does not address nasal deformities.

4. Nasal Hook

What It Is: A nasal hook (or nasal elevator) is a device inserted into the nose and supported externally on the forehead.

How It Works: Gradually elevates the collapsed nostril to improve its position.

Benefits: Simplifies the process and reduces the need for frequent office visits.

Disadvantages: Risk of overcorrection leading to "mega nostrils."

5. PLANA therapy (NoseAlign Device)

What It Is: A prefabricated medical-grade silicone device designed to align and mold the nose in infants with cleft lip and palate.

How It Works: The device is inserted in the baby’s nostril to support collapsed nasal cartilage, improving symmetry before surgery.

Benefits: Reduces office visits, is user-friendly for caregivers, and works for unilateral and bilateral clefts.

Disadvantages: Must begin within the first two weeks of life and may not support controlled gum closure.

Challenges of Presurgical Therapy

Compliance: Ensuring the baby wears the device or tape as prescribed can be difficult, especially if the device causes discomfort or interferes with feeding. Caregiver diligence is essential.

Cost: Presurgical therapies can be expensive, with limited insurance coverage for some families. This financial burden is a significant barrier to care.

Frequent Appointments: Options like NAM and the Latham appliance require regular adjustments, which can be time-consuming and stressful.

Feeding Difficulties: Devices with oral plates may interfere with feeding, making it harder for babies to gain weight. Additional caregiver support may be required.

Emotional Stress: The process can be emotionally taxing for parents, who may already be coping with the challenges of their baby’s condition. Support networks and healthcare guidance are critical.

Why Presurgical Therapy Is Recommended

Despite the challenges, presurgical therapy offers significant advantages:

1. Improved Surgical Outcomes: By reducing the cleft size and aligning facial structures before surgery, presurgical therapy makes surgical repairs easier and more effective, leading to improved long-term results.

2. Reduced Risk of Complications: Enhanced tissue alignment minimizes the likelihood of complications during and after surgery, ensuring a smoother recovery process for the baby.

3. Lower Incidence of Revision Surgeries: Proper presurgical preparation decreases the need for additional surgeries, contributing to better overall outcomes and less burden on families.

Conclusion

Presurgical therapy is a vital part of comprehensive cleft care, providing benefits in surgical outcomes and overall quality of life for infants with cleft lip and palate. While it presents challenges, its potential advantages make it a highly recommended option for many families.

At CleftAlign, we are dedicated to reducing the complexity of presurgical cleft care. If you have questions or need guidance on presurgical therapy, please contact your cleft our team for more information.

There are different Presurgical Infant Orthopedics Therapy (PSIO) methods practiced at American Cleft Palate Craniofacial Association (ACPA) approved cleft teams in North America*. Your provider will make appropriate recommendations on the type of PSIO therapy that your child will benefit from based on the clinical evaluation. Each of these appliances have pros and cons and your provider will discuss them with you.

Avinoam, S.P., Kowalski, H.R., Chaya, B.F. and Shetye, P.R., 2022. Current presurgical infant orthopedics practices among American CleftPalate Association–approved cleft teams in North America. Journal of Craniofacial Surgery, 33(8), pp.2522-2528.