Comprehensive multidisciplinary care for cleft lip and palate

Cleft lip and palate (CLP) is among the most common congenital (“from birth”) visual facial differences, affecting approximately one in 1,000 newborns worldwide. As someone with a cleft lip and palate, a parent of a child with a cleft and professional experience working on a cleft team as a mental health consultant, I have a unique perspective on the multifaceted nature of CLP care. This article aims to shed light on CLP, the importance of cleft teams, available parenting education resources and the potential impact of CLP on a child’s overall development.

Understanding Cleft Lip and Palate

Although the cause of the condition is unknown, cleft lip and palate are characterized by abnormal lip and palate closure during the early stages of fetal development. Some infants are born with only a cleft lip or a cleft palate, while others may have both conditions simultaneously. A cleft lip can manifest as a small slit or a significant gap extending from the lip into the nose, and it can occur on one or both sides of the lip or even in the middle. Similarly, a cleft palate can affect the palate’s front, back, or hard or soft parts.

The Role of Cleft Teams

Effective cleft lip and palate treatment requires a comprehensive, multidisciplinary approach. CLP teams typically include oral maxillofacial surgeons, orthodontists, nurses, speech therapists, audiologists, psychologists and other mental health professionals. Each specialist plays a crucial role in addressing the various aspects of CLP:

• Oral maxillofacial surgeons perform the necessary operations to repair the cleft lip and palate, often starting within the first few months of life and continuing through adolescence.

• Orthodontists address dental and jaw alignment issues that often accompany CLP.

• Speech therapists work with children to correct speech abnormalities that may arise from the cleft.

• Audiologists monitor and treat hearing problems, common in children with cleft palate due to frequent middle ear infections.

• Psychologists and other mental health professionals provide emotional support and counseling to help families cope with the social and psychological challenges associated with CLP.

This collaborative approach ensures that all aspects of a child’s development are supported, leading to better overall outcomes.

Impact on Development

Children with cleft lip and palate often face numerous physical challenges, including feeding difficulties, ear infections, dental issues and speech problems.

Surgical interventions, typically beginning within the first year of life, are crucial for repairing the cleft and improving function and appearance. Multiple surgeries may be required as the child grows, with orthodontic treatment and speech therapy playing critical roles in addressing secondary issues.

Many children with CLP are at an increased risk of learning difficulties, particularly in areas requiring language skills. Hearing problems associated with CLP can impact language development and academic performance. Early intervention and regular monitoring by audiologists and speech therapists are essential to address these issues. Schools can provide additional support through individualized instruction to address specific learning needs.

The social and emotional impact of cleft lip and palate can be profound. Children with visual facial differences are at risk of experiencing bullying or social exclusion, leading to low self-esteem and social anxiety. As a parent and psychologist, I understand the importance of fostering a positive self-image and resilience in children with CLP. Encouraging open communication about their condition, promoting participation in social activities and connecting with supportive peers can help children build confidence and develop healthy social skills.

Parenting Education Resources

For parents, navigating the complexities of cleft lip and palate can be daunting.

Access to reliable information and support networks is essential. Numerous resources are available to help parents understand and manage their child’s condition:

American Cleft Palate-Craniofacial Association (ACPA) provides guidelines on best practices for CLP treatment and connects families with cleft teams.

Smile Train offers extensive educational materials, support groups and funding for surgeries in underserved areas.

Local cleft teams often host workshops and support groups where parents can share experiences and receive guidance from health care professionals and other parents.

Social media and online communities may offer a platform for parents to connect, share advice and find emotional support. Some caution should be used with certain online platforms due to the potential of misinformation and frightening stories that may negatively affect someone’s cleft journey.

If you would like more information about CLP and other VFDs, please visit ACPA at https://acpacares.org/

Living with cleft lip and palate presents unique challenges, but individuals with CLP lead fulfilling lives with the proper support and resources. Multidisciplinary cleft teams are invaluable in providing comprehensive care that addresses the physical, academic and social-emotional needs of children with CLP. Parenting education resources and support networks play a crucial role in helping families navigate this journey. By raising awareness and fostering understanding, we can ensure that individuals with CLP receive the care and support they need to thrive.

Adam Blancher, PhD, is a clinical associate professor and licensed psychologist at LSU Health Shreveport.