Introduction

What is Cleft Lip and Palate

Cleft lip and cleft palate are considered as birth defects that occur when the baby’s lip and mouth do not form properly during pregnancy.

Dr. Ali Hassan Al-Qattan
Bachelor of Medicine, Surgery, Gynecology and Obstetrics
The Royal College of Surgeons in Ireland

What is Cleft Lip and Cleft Palate?

Cleft lip and cleft palate are considered as birth defects that occur when the baby’s lip and mouth do not form properly during pregnancy, which can affect the baby’s feeding, speech and facial appearance. In addition, they are associated with recurrent ear infections, hearing problems, teeth development and psychological problems.

What is Cleft lip?

The lip forms between the fourth and seventh week of pregnancy. As the baby develops during pregnancy, facial tissues and special embryonic (baby) cells from each side of the head grow toward the center of the face and join together to make the face. A cleft lip happens if these growing embryonic (baby) tissues that make up the lip do not join correctly and completely before birth. This results in an opening in the upper lip. This opening can be a small slit in the lip or it can be a large opening that goes through the lip into the nose. Cleft lip can happen on one or both sides of the lip or in the middle of the lip. Children with cleft lip can also have a cleft palate.

What is Cleft Palate?

The roof of the mouth (palate) is formed between the sixth and ninth week of pregnancy. A cleft palate happens if the embryonic (baby) tissues that make up the roof of the mouth do not join together correctly and completely during pregnancy, leaving an opening in the roof of the mouth (palate). For some babies, both the front and back parts of the palate are open. For other babies, only part of the palate is open.

Other Associated Problems:

Children with a cleft lip, who may or may not have a cleft palate too, or children with only cleft palates, usually have problems with speaking clearly, feeding, hearing and teeth development.

Statistics

(Number of Babies born with Cleft lip / Cleft Palate):

  • About 1 in every 1,600 babies is born with cleft lip with cleft palate in the United States.
  • About 1 in every 2,800 babies is born with cleft lip without cleft palate in the United States.
  • About 1 in every 1,700 babies is born with cleft palate in the United States.

Causes and Risk Factors:

There are many causes of cleft lip and cleft palate. They can happen due to genetic syndromes and problems in the genes. They can also happen due to the enviromental factors faced by the mother during her pregnancy. In some cases, the causes of cleft lip and cleft palate are unkown. Here are some factors that increase the chance of giving birth to a baby with cleft lip/cleft palate:

  1. Smoking: Women who smoke during pregnacy are more likely to give birth to a baby with cleft lip/palate compared to women who do not smoke.
  2. Diabetes: Diabetic women are more likely to give birth to a baby with cleft lip/palate compared to women who do not have diabetes.
  3. Use of Certain Medicines: Women who used certain medications to treat epilepsy such as valproic acid or topiramate during the first three months of pregnancy have an increased risk of giving birth to a baby with cleft lip with or without cleft palate.
  4. Obesity during Pregnancy: There are evidences that babies who are born to obese women are more likely to have cleft lip /cleft palate.
  5. Genetic Syndromes and Disorders: There are plenty of genetic syndromes and disorders that can cause cleft lip /cleft palate. Examples of these genetic syndromes and disorders include Digeorge Syndrome, Stickler Syndrome, Van Der Woude Syndrome (VDWS) and Pierre Robin Syndrome.
  6. Family History: A parent with known family history of cleft lip / cleft palate is more likely to have a baby with cleft lip /cleft palate.

Diagnosis:

All cleft lip /cleft palate cases can be diagnosed by looking at the baby’s face and mouth after delivery without the need of complex imaging and diagnostic tests. However, cleft lip /cleft palate can be diagnosed nowadays during pregnancy and before childbirth due to the advancement in medicine and technology. This can be done by doing an ultrasound during pregnancy (from the beginning of the 13th week of the pregnancy).

The Ultrasound Machine uses ultrasound waves to create images for the embryo (baby) in the mother’s womb and visualize his/her parts. Cleft lip/cleft palate can be diagnosed by looking at these pictures created by the ultrasound machine, if they exist. However, cleft palate can be more challenging to diagnose, as it is hard see it in the ultrasound images.

The doctor can also take a sample of the fluid surrounding the baby in the mother’s womb (Amniotic Fluid) using a special needle under the ultrasound’s guidance. This sample is then sent to the lab for analysis and to check whether there are genetic syndromes or gene problems that may cause the cleft lip /cleft palate.  

Treatment:

Cleft lip and cleft palate treatment aims to treat the facial appearance caused by the cleft lip /cleft palate and the complications associated with them such as the feeding, the speech, and the hearing problems.

Treating cleft lip/cleft palate requires a Multi-Disciplinary Team (MDT) that consist of different specialists including: Ear Nose and Throat(ENT) Surgeons, Plastic Surgeons, Ear Nose and Throat(ENT) Doctors; Pediatricians, Pediatric Dentists, Orthodontist, Nurses, Speech and Language Therapists, Medical Geneticists, and Psychologists.

The main treatment is a surgical operation to repair the cleft lip/ cleft palate followed by other operations to fix the appearance of the nose , mouth and lip, and to treat any other complications caused by the cleft lip /cleft palate.

The surgical operations can be done in the following sequence:

  1. Cleft Lip Repair Operation: it can be done between the age of 3 to 6 months. The surgeon will fix the cleft lip by making two incisions on both sides of the cleft, in order to make a tissue connection, which will connect both sides and close the gap caused by the cleft lip.
  2. Cleft Palate Repair Operation: it should be done by the age of 12 months. The surgeon will fix the cleft palate by reconstructing and reshaping the roof of the mouth (palate) using complex surgical techniques.
  3. Follow-up Operations to treat complications: it can be done between the age of two to twenty years. These operations aim to improve the appearance of the nose, lip and mouth and to prevent recurrent ear infections  by preforming operations to the ear canal.

Treatment of Complications Associated with Cleft Lip /Palate:

  • Feeding strategies, such as using a special bottle nipple or feeder.
  • Speech therapy to correct difficulty with speaking.
  • Monitoring and treatment of ear infections, which may include placing ear tubes.
  • Hearing aids or other assistive devices for a child with hearing loss.
  • Orthodontic adjustments to the teeth and bite, such as having braces.
  • Monitoring by a pediatric dentist for tooth development and oral health from an early age.
  • Therapy with a psychologist to help the child cope with the stress of repeated medical procedures or other concerns.

Coping and Support

No one expects to have a baby with a birth defect. When the excitement of a new life is met with the stress of discovering that your baby has a cleft lip or cleft palate, the experience can be emotionally demanding for the entire family.

For Parents and Family:

When welcoming a baby with cleft lip and cleft palate into your family, keep these coping tips in mind:

  • Do not blame yourself and try to find the available resources and help, in order to overcome this situation and enjoy your life with your new baby.
  • Acknowledge your emotions: It is completely normal to feel sad, overwhelmed, and upset, but do not allow these emotions to make you pessimistic and hopeless.
  • Find support: Seek help from the healthcare workers who deal with cleft lip /cleft palate and consult them, as the treatment of these two conditions are available.

For your Child:

You can support your child in many ways:

  • Focus on your child as a person, not on the cleft.
  • Point out the positive qualities in others that do not involve physical appearance.
  • Help your child gain confidence by allowing him or her to make decisions.
  • Encourage confident body language, such as smiling and holding the head up with shoulders back.
  • Keep the lines of communication open. If teasing or self-esteem issues arise at school, these measures can help your child feel safe enough to talk to you about such issues, so that you can help in addressing them.

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