Why does it occur?
The nurse hands you your newborn daughter after cleaning her up. As you look at her precious face, you realize there is a split in her lip that goes almost to her nose. You ask the doctor what happened, and he says that she has a cleft lip. Why did this occur? What impacts will it have on your daughter? Can it be fixed?
A cleft lip is when there is an opening or split in the upper lip. A cleft palate is an opening or split in the roof of the mouth (palate). Some individuals have only one of these; whereas, others have both. It’s the result of the facial structures not fusing correctly in the developing fetus, which is supposed to occur during the second and third months of pregnancy. It’s one of the most common birth defects. It can happen on its own or is associated with other inherited genetic conditions. In most cases, the exact cause is never identified. Boys are more likely to have a cleft lip with or without a cleft palate. Girls usually have a cleft palate without a cleft lip.
The main symptom is the noticeable split in the lip and/or palate that affects one or both sides of the face. The split can be a small notch in the lip or extend to the bottom of the nose. If the separation affects only the palate, there won’t be any external evidence. A less common form is when the cleft occurs only in the soft palate muscles, located in the back of the mouth and covered by the mouth’s lining. This is known as a submucous cleft palate. Since it’s not noticeable, it’s not usually diagnosed right away. Symptoms of this type include difficulty with feedings, difficulty swallowing, liquids/foods come out the nose, nasal speaking voice, and chronic ear infections.
Certain factors can increase the risk of having a baby with a cleft lip/palate. One that isn’t controllable is having a family history of the disorder. Others are modifiable and include women who have diabetes, are obese, smoke cigarettes, drink alcohol, or take certain medications during pregnancy. Children with cleft lip/palate have a variety of challenges to overcome. Each one depends on the severity and type of cleft. One of the most problematic is feeding challenges because a cleft palate can make sucking difficult. For babies with only a cleft lip, it’s not as much of an obstacle. Babies with a cleft palate are also more likely to have fluid in the middle ear, which results in frequent ear infections and can lead to permeant hearing loss. If the cleft goes through the upper gum, it can impact tooth development. Since the palate plays a vital role in speech, a cleft can affect normal speech development. Children with cleft lips/palates often have social, emotional, or behavioral problems because of their different appearance.
The primary goal of treatment for cleft lip/palate is to increase a child’s ability to eat, speak, and hear normally. The other purpose is to have a normal facial appearance as possible. To achieve both of these, surgery is required. For a cleft lip, the repair is done within the third and sixth months of life. Cleft palate repair is completed by the twelfth month of life. Any follow-up surgeries are done between the age of two and late teen years.
Surgical techniques vary. For cleft lip repair, the surgeon makes an incision on both sides of the cleft to create flaps of tissue that are then stitched together, including lip muscles. This should produce a more normal lip appearance, structure, and function. If the child needs a nasal repair, the initial procedure is usually completed at the same time. The repair for a cleft palate is very similar. If there is concern about a child having a build-up of ear fluid, they may need to have ear tubes placed. Other treatments include learning feeding strategies, speech therapy, monitoring for tooth development, hearing aids (if required), orthodontic adjustments, and psychological therapy.
For parents, it’s critical not to blame yourself. This doesn’t mean not acknowledging your emotions of feeling sad, upset or overwhelmed. It’s vital to find support and focus on helping your child. Part of this is thinking of your child as a person rather than concentrating on the cleft. You can do this by pointing out their positive qualities that don’t involve physical appearance while helping them gain confidence by allowing them to make decisions, encouraging positive body language (ex. holding head up and smiling), and letting them know that they can talk to you if they’re feeling upset or being teased.
In many cases, cleft lip/palate can’t be prevented. However, there are steps you can take to reduce the chances. If you have a family history of the disorder, it’s vital to receive genetic counseling before getting pregnant. If you’re planning on becoming pregnant, talk to your doctor about your risk level and what you can do to mitigate it. During pregnancy, take prenatal vitamins and don’t use tobacco or alcohol.
Having a child born with a cleft lip/palate can be devastating initially. However, with the correct treatment and support, your child will have a happy and healthy life. If you have any questions or concerns about cleft lip, please speak with your doctor. If you would like more information, please visit the March of Dimes’ Cleft Lip and Plate page at https://www.marchofdimes.org/baby/cleft-lip-and-cleft-palate.aspx