The Impact of Cleft Lip and Palate: Beyond Cosmetic Concerns

✎Dr. William Koo, PharmD, RPh

Introduction

Cleft lip and palate are more than just physical conditions—they have profound emotional, social, and psychological impacts on individuals. Though my cleft lip and palate were repaired early in life, the journey of growing up with these conditions shaped my experiences and character in ways that go far beyond appearance. It wasn’t just the physical differences; it was the social stigma and emotional toll that made my childhood particularly challenging.

Children, especially during their formative years, can be cruel when they encounter something or someone different from the norm. I was often taunted and bullied because of my facial differences. This bullying was relentless, leaving me feeling isolated and self-conscious. My cleft lip and palate, which were medical issues, became social barriers that affected my interactions with peers and, consequently, my sense of belonging.

From a young age, I struggled with self-esteem. The anxiety of going to school, knowing I would face ridicule, was overwhelming. I tried to avoid attending school altogether, and on the days I did go, I often found excuses to hide in the bathroom for as long as possible, avoiding classmates and the hurtful comments they made. Despite my parents’ repeated interventions with school officials, including meetings with the administrative staff and principal, the bullying persisted.

The constant teasing left me feeling hopeless. Each day was filled with dread, starting with the moment I left my house and continued until I returned home. I had to endure physical altercations that often left me with bruises and scratches, and I felt emotionally drained. At such a young age, I didn’t fully understand how to process these emotions. However, these experiences forced me to learn emotional resilience and self-advocacy. Over time, I developed thicker skin and learned how to stand up for myself in the face of adversity.

At one point, I believed the world was full of cruel people. The unkindness of many of my peers made me question the goodness of humanity. But as I grew older and interacted with more people, I realized that not everyone is cruel. I formed meaningful connections with other children who, like me, had their own struggles—whether physical, emotional, or social. These relationships taught me that empathy and kindness are more prevalent than I initially thought, and they fostered in me a deep sensitivity toward individuals with physical abnormalities.

To this day, I have a soft spot for anyone who looks or feels different. The saying “You can’t truly understand someone’s struggles unless you walk a mile in their shoes” rings especially true for me. I’m not a hero, but I’ve always tried to do what’s right. My experiences have shaped how I raise my own son. I teach him to show empathy and kindness to others, especially to those who are different. A simple, friendly greeting—"Hi, how are you?"—can make a world of difference to someone who feels isolated or ostracized.

Another significant challenge I faced due to my cleft palate was my speech. The condition led to a speech impediment, which required me to take mandatory English as a Second Language (ESL) classes for several years. This, too, became a source of ridicule. Children would mock me not only for my facial appearance but also for my speech difficulties. On top of that, my hearing was also affected, making it difficult for me to hear certain sounds, which only exacerbated my communication challenges.

Despite these hardships, I’ve grown into an adult with resilience and perseverance. I have faced adversity and come out stronger, and now I pass those lessons on to my son. I teach him the importance of showing kindness and understanding to those with differences because I know firsthand how much it matters.

A Medical Overview of Cleft Lip and Palate

Cleft lip and palate are the most common types of orofacial congenital abnormalities. These conditions not only affect the appearance of the face but also have far-reaching implications for speech, hearing, dental development, and overall health. Oftentimes, cleft lip and palate occur alongside other congenital conditions, such as congenital heart disease.

A cleft lip is a birth defect where there is an opening or split in the upper lip. This occurs when the developing facial structures in an unborn baby do not close completely. Cleft palate, on the other hand, is a condition where a baby's palate (roof of the mouth) does not form properly, leaving an opening. The prevalence of orofacial clefting is approximately 1.5 per 1,000 live births, though rates vary among different populations and ethnic groups. For example, in Chinese populations, the incidence is 1.76 per 1,000 live births, while in Japanese populations, it ranges from 0.85 to 2.68 per 1,000 live births.

Gender plays a role in the occurrence of cleft lip and palate. Boys are more likely to be born with both cleft lip and palate, while isolated cleft palate is more common in girls. There are three main types of cleft abnormalities: cleft lip alone, cleft lip and palate together, and isolated cleft palate. Each of these types has different prevalence rates: isolated cleft lip accounts for about 15% of cases, cleft lip and palate together make up 45%, and isolated cleft palate accounts for 40%.

Cleft lip and palate occur during different stages of pregnancy. Cleft lip results from the failure of tissue fusion between the 6th and 11th weeks of pregnancy, while cleft palate occurs between the 6th and 9th weeks. The sixth week of pregnancy is especially critical for craniofacial development, as it is the period during which the human face is most vulnerable to developmental issues.

Causes and Risk Factors

The causes of cleft lip and palate are multifactorial, involving both genetic and environmental factors. Genetic causes can be divided into syndromic and non-syndromic categories. Syndromic clefting occurs along with other health problems or physical abnormalities, such as developmental delays, growth issues, behavioral problems, and intellectual disabilities. It is caused by genetic mutations, chromosomal abnormalities, or exposure to teratogens. Van der Woude syndrome, which results from a mutation in the IRF6 gene, is the most common form of syndromic clefting.

Non-syndromic cleft lip and palate (NSCL) are caused by a combination of genetic and environmental factors. It can also be caused by a single gene mutation, typically IRF6 or VAX1. Environmental risk factors for NSCL include maternal smoking, alcohol consumption, exposure to viral infections, malnutrition, and teratogenic medications. Nutritional deficiencies, particularly in vitamins like folic acid and cobalamin, can also contribute to the development of cleft lip and palate.

Several studies have explored the likelihood of cleft lip and palate occurring in families. If one parent is affected by a cleft, there is a 3.2% chance of their child being born with a cleft lip and palate and a 6.8% chance of the child having an isolated cleft palate. If both a parent and a sibling have a cleft, the likelihood increases significantly: there is a 15.8% chance that the next child will have a cleft lip and palate, and a 14.9% chance of an isolated cleft palate.

Detection and Symptoms

Birth defects, including cleft lip and palate, can range from mild to severe. Healthcare providers use various screening methods during pregnancy to detect these conditions. Ultrasounds, blood screenings, fetal echocardiograms, and fetal MRI are commonly used to assess the developing fetus for signs of abnormalities. In some cases, amniocentesis may be performed. Signs of a cleft or other birth defects may include abnormal protein levels in the mother’s blood, extra fluid behind the fetus’s neck (nuchal translucency), and structural abnormalities in the fetus’s internal organs, such as the heart.

The developing fetus is most vulnerable to birth defects during the early stages of pregnancy when organs are forming. The most critical period is between two and ten weeks after conception, when the risk of developmental abnormalities is at its peak.

Treatment and Surgical Intervention

While many birth defects, including cleft lip and palate, cannot be fully prevented, prenatal care plays an essential role in reducing risk factors. Regular visits to a healthcare provider, taking prenatal vitamins with at least 400 mcg of folic acid, avoiding smoking and alcohol, and minimizing exposure to hazardous chemicals can help improve the chances of a healthy pregnancy.

For infants born with cleft lip and palate, surgical intervention is often required to address both functional and aesthetic concerns. The primary goal of cleft lip repair is to restore oral competence and create a functional muscular sphincter using the orbicularis oris muscle. At the same time, cosmetic considerations are equally important, as successful reconstruction of the lip significantly improves the child’s appearance.

A multidisciplinary team, including specialists from various fields—otolaryngology, genetics, speech pathology, orthodontics, and maxillofacial surgery—is typically involved in the care of a child born with cleft lip and palate. The timing of surgery follows the “rule of tens,” which dictates that the patient should be at least 10 weeks old, weigh 10 pounds, and have a hemoglobin level of 10 g/dL. Cleft lip surgery is usually performed between three and six months of age. During the procedure, the surgeon carefully trims the tissue and sutures the lip together. The stitches are designed to dissolve as the scar heals.

Cleft palate repair, or palatoplasty, is usually performed when the child is around 18 months old, as this is when they begin to develop speech. Palatoplasty involves closing the gap in the roof of the mouth and rearranging the muscles to facilitate speech development. After the surgery, the patient is monitored for several days before being discharged.

Postoperative Care and Complications

While cleft lip and palate surgery generally yield positive outcomes, complications can arise. One of the most common complications is the formation of a fistula, or a residual hole, in the roof of the mouth. This occurs in about 9% of cleft palate surgeries and can lead to difficulties with speech, nasal regurgitation of food and liquids, and other issues. In more severe cases, Velopharyngeal Insufficiency (VPI) may develop, a condition where the palate does not close properly during speech, leading to hypernasality. Speech therapy is often the first line of treatment for these complications. If speech therapy is insufficient, additional surgical interventions may be required.

Maxillary hypoplasia, or underdevelopment of the upper jaw, is another complication that can occur. This condition may be caused by the cleft itself or by scarring from previous surgeries. Approximately 25-50% of individuals with cleft lip and palate will require further surgical correction for jaw undergrowth.

Psychosocial Impact and Life Beyond the Surgery

While cleft lip and palate are not life-threatening conditions, the psychosocial impact on individuals can be profound. Children with clefts often face social stigma, bullying, and teasing, which can significantly affect their self-esteem and social development. The visible nature of the condition can lead to feelings of embarrassment and isolation, which may influence their psychological well-being and communication skills.

Children with cleft lip and palate may also experience difficulties in school, not only due to their speech and hearing issues but also because of the bullying and teasing from peers. These challenges can affect their educational experience and their overall development.

Fortunately, with proper medical care and support, most individuals born with cleft lip and palate lead healthy, fulfilling lives. Advances in surgical techniques and interdisciplinary care have significantly improved the outcomes for these patients. As parents, it is important to understand that cleft lip and palate are not your fault, and you are not alone in your journey. Surround yourself and your child with a strong support system, including healthcare professionals and other families who have gone through similar experiences.

Conclusion

In conclusion, cleft lip and palate are complex conditions that affect not only the physical appearance but also the emotional and psychological well-being of those affected. While surgery and medical intervention are critical components of treatment, empathy, and support from family and society play an equally important role in helping individuals with clefts lead happy, successful lives.

Cite this article:

Koo, W. The Impact of Cleft Lip and Palate: Beyond Cosmetic Concerns. Drug Information Blog. WritePharma. Available online at https://www.writepharma.com/the-impact-of-cleft-lip-and-palate-beyond-cosmetic-concerns