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Born with a Cleft Lip and Palate. What are the Challenges Ahead?

The birth of a baby is a joyous time for new parents, which comes with its own challenges. However, for the parents of a child born with certain facial differences like cleft lip and/or palate, the challenges may seem overwhelming. Children with cleft lip and palate encounter many different challenges throughout their life, but it will be alright.  There are biological factors that can affect their speech, hearing, and dental appearance and function. In addition, the type of cleft, age, and gender also affect individuals.  

What is a Cleft Lip and Palate?

Children with cleft lip and palate are born with an opening in the roof of their mouth, and it leaves a hole between the upper lip and the nose resulting in a split. A cleft lip can be a unilateral cleft lip or on both sides of the lip. The cleft may vary in size and can be just a tiny notch, or others may extend through the upper gum up till the nostril.

A cleft may happen when the bones, muscles and the skin of the baby’s upper jaw, mouth, and nose fuse together to form the roof of the mouth in the early weeks of pregnancy. While doctors still don’t know why it happens, some factors increase the chances of such congenital disabilities like:

  • Genetic factors
  • Exposure to some chemicals during pregnancy
  • Not getting prenatal nutrients
  • Consuming certain medicine during pregnancy
  • Drinking alcohol, using drugs, or smoking cigarettes during pregnancy

There are a number of side effects of cleft lip and palate, such as feeding difficulties, speech and language delay, ear infections, hearing loss, and dental problems. The only way to repair cleft lip and palate is with surgery. Treatment for cleft lip or cleft palate will extend over several years, needing multiple surgeries, and is best coordinated with an accredited Cleft and Craniofacial Team.  This team will include specialists in communication, speech, hearing, dental, social work, feeding, nursing, genetics, and others.

Psychosocial Challenges of Adolescents and Teens with Cleft Clip and Cleft Palate

With the advancement in medical services and awareness among people, it is rare to find any adult with cleft lip and palate that have not been operated upon. Most children who have their cleft lip repaired early on have a healthy social life. But teenagers with cleft lip/palate are at a higher risk of developing psychosocial challenges, especially those relating to appearances, peer relationships, and self-concept. The psychosocial challenges in adolescence and teens with cleft lip and cleft palate can affect their confidence, self-esteem, and the way they engage in social relationships.

Some of the problems that adolescents and teens with cleft lip/ palate encounter include:

  • Staring
  • Teasing and bullying
  • Name-calling
  • Self-consciousness
  • Questions about their deformity
  • Overprotection of their parents
  • Discomfort in social settings
  • Difficulty being understood

Overcoming Negative Social Attitude and Stigma

While many individuals with cleft lip/cleft palate have experienced negative experiences due to their facial conditions, they resisted it through:

  • Joining cleft lip support groups
  • Different coping strategies and methods such as restructuring thoughts, problem- solving, and regulating their emotions
  • Timely intervention such as surgery

Support from Family and Friends

According to a number of studies, psychosocial challenges among adolescents with cleft lip or palate see a positive impact on their self-esteem with high family and family support. It resulted in:

  • Better adjustment to social situations
  • Less stress
  • Lower psychological distress

While they have certain dissatisfaction about their facial differences, they were more content with other facial features like their eyes, hair, and even teeth compared to their peers with no facial deformity. Reconstructive surgeries help raise their confidence levels, and this feeling is heightened due to the comparison of their past feelings about their appearances before the surgery.

Coping as an Adult

Individuals with cleft lip and/or palate may experience emotional distress persisting into adulthood. As they venture into adulthood and outside the safety net of their friends and family, many experience fear and anxiety. Social comfort levels are put to the test as adults delve into many new experiences like:

  • Meeting new people
  • Taking job interviews
  • Getting into romantic relationships

Empowering teens to be open at their medical appointments helps them start their journey on the road to independence and boosts their confidence. Integrating a cleft lip support group right from an early age is highly recommended, and so is the right information for adults with cleft lip who are about to complete their treatment. Adults with cleft lip may also benefit from support with the following:

  • Accessing information about new treatments
  • Concerns about their appearance and speech
  • Making the transition from their childhood treatment services
  • Self-esteem, confidence, and social anxiety
  • Dealing with social stigma at the workplace
  • Intimacy
  • Impact on their parenting style

While most adults cope well, some may need additional support to deal with any ongoing issues along with any new issues arising in adulthood. Thorough psychological screening for adults with a cleft lip is also recommended for managing cleft palate problems in adulthood and to ensure good emotional well-being. Ensuring ongoing support can help build confidence and greatly improve the quality of life that is going to last a lifetime.

tollefsonBorn with a Cleft Lip and Palate. What are the Challenges Ahead?