Cleft Lip And Cleft Palate

1 What are Cleft Lip and Cleft Palate?

Cleft lip and cleft palate are birth defects that cause slit in the upper lip, the roof of the mouth (palate) or both.

These malformations occur when facial structures bind partially during fetal development.

It may occur without obvious cause or due to inherited genetic conditions.

Surgeries can repair cleft lip and cleft palate. Most cases require a number of surgeries to improve function and achieve near normal appearance.

2 Symptoms

Your child's cleft lip and cleft palate are usually diagnosed soon after birth and their symptoms are:

  • A separation in the lip and roof of the mouth (palate) affecting one or either sides of the face
  • A split in the lip may look like a small groove or an extensive malformation that runs from the lip through the upper gum and palate into the bottom of the nose
  • A separation in the roof of the mouth, which does not alter appearance of the face

A rare malformation that occurs in the muscles of soft palate (back of the mouth that is covered by mouth's lining) is called submucous cleft palate.

The signs and symptoms of submucous cleft palate, which are detected later, include:

  • Feeding problems
  • Swallowing problems that may cause liquids or foods to come out of the nose.
  • Nasal speaking voice
  • Persistent ear infections

When to see a doctor?

Your doctor normally detects a cleft lip and cleft palate at the time of birth and s/he can immediately start necessary medical care. Talk to your child’s doctor if your baby develops signs and symptoms of a submucous cleft palate.

3 Causes

Partial or no fusion of tissues in the lips and palate is the main cause of cleft lip and cleft palate.

In a normal case, the fusion occurs during the second or third months of pregnancy.

The exact reason behind this incomplete or missed fusion is unclear but it is believed to occur due to a combination of various genetic and environmental factors.

A baby can inherit the cleft-causing gene from either father or a mother while some babies predisposed to this condition develop cleft palate only after being exposed to some environmental triggers.

4 Making a Diagnosis

Diagnosis of a cleft lip and a cleft palate is made shortly after birth without employing any specific tests.

If your child has cleft lip, cleft palate or both, you'll be referred to specialists who can treat the condition of your child.

How to prepare yourself for the visit?

Getting prepared for the visit can optimize the therapy and help make the visit more fruitful. List out all the symptoms.

Write down the key medical information. Write down the names of all medications, vitamins or supplements taken during pregnancy. 

Make a list of the questions to ask your doctor

Some typical questions can be:

  • Do these symptoms indicate a cleft lip, cleft palate or both?
  • What could be the most probable cause for my baby's cleft lip or cleft palate?
  • What are the tests needed for my baby?
  • Can you suggest me the best treatment plan?
  • Does my baby need to follow any restrictions?
  • Do you recommend seeing a specialist?
  • Is my future child at the same risk?

What your doctor wants to know?

A clear talk with your doctor can optimize the therapy and improve the outcomes. Prepare yourself to answer some essential questions from your doctor.

Your doctor might ask you typical questions like:

  • Is there a history of cleft lip and cleft palate in your family?
  • Have you experienced problems while feeding your baby, such as gagging?
  • What other symptoms have you noticed in your baby?
  • Are the symptoms responsive to any factor?

Ultrasound before birth can show your baby’s cleft lip and cleft palate while the baby is still in the womb. It is easier to detect cleft lip if the fetus is 13 weeks or older.

Ultrasound may not effectively detect a cleft palate not accompanied by a cleft lip. If cleft is observed during prenatal ultrasound, your doctor may perform amniocentesis (amniotic fluid test).

Your doctor, with the help of amniocentesis, can determine if your fetus has inherited a genetic syndrome that may cause other birth defects.

5 Treatment

The treatment for cleft lip and cleft palate is focused to normalize your child's ability to eat, speak and hear along with the physical appearance.

The care team for children with cleft lip and cleft palate includes:

  • Ear, nose and throat doctor (ENT specialist or otolaryngologist)
  • Pediatricians
  • Surgeons who specialize in cleft repair, such as plastic surgeons or ENTs
  • Oral surgeons
  • Pediatric dentists
  • Orthodontists
  • Nurses
  • Auditory or hearing specialists
  • Speech therapists
  • Genetic counselors
  • Social workers
  • Psychologists

Cleft palate or cleft lip is corrected by surgery. Any associated conditions are treated by medications.

Surgery

Surgery can repair your baby’s cleft lip and palate. Once the first surgery is successful, your child’s doctor may recommend numerous other surgeries to normalize speech, and physical appearance of lip and nose.

These follow-up surgeries are recommended after your child turns 2 and may be repeated till late teen years. All these surgeries are carried out under general anesthesia.

Surgical techniques that repair, remodel and prevent or treat the complications include:

Cleft lip repair

This surgery is performed within 12 months of age and involves sewing together the separated edges of the cleft. This surgery can affect appearance and function of the lips. Nasal repair, if necessary, is done at the same time.

Cleft palate repair

This surgery is performed within 18 months of age and involves relocating the tissues and muscles to join the separated palate.

Ear tube surgery

The surgeon can place small ear tubes in your child’s eardrum to avoid fluid accumulation and prevent eventual hearing loss. It is performed when the child is 6 months old.

Reconstructive surgery to enhance appearance

Other surgeries that improve the physical appearance of face may also be carried out. Overall, surgeries can enhance your child's quality of life and functional abilities including ability to ear, breathe and talk.

Risks of Surgery

Surgeries may increase risk of bleeding, infection, delayed healing, and temporary or permanent nerve or blood vessel damage.

Treatment for complications

Your doctor may recommend treatments to cope with complications caused by cleft lip and cleft palate. Some of them are:

  • Feeding strategies: Since it's difficult to feed your child, your doctor may recommend special bottle nipple or feeder.
  • Speech therapy: It is recommended to improve speech of your child.
  • Orthodontic adjustments such as braces.
  • Routine dental examination for tooth development and oral health.
  • Regular monitoring for ear infections.
  • Hearing aids or other assistive devices to improve hearing if your child has developed hearing loss.
  • Psychotherapy to help your child deal with the stress and anxiety caused by repeated medical procedures.

6 Prevention

In most cases, cleft lip and cleft palate cannot be prevented. A baby with a cleft obviously increases parents’ concerns about the recurrence in future child.

However, with these tips, you can level up your understanding or lower your risk: 

  • Consider genetic counseling: Talk to your doctor about the risk of the condition for future child especially if you have a family history of cleft lip and cleft palate. You can also discuss the matter with a genetic counselor to obtain further insights.
  • Consider taking prenatal vitamins: Ask your doctor if prenatal vitamins are useful.
  • Avoid tobacco or alcohol during pregnancy. If possible, always.

7 Lifestyle and Coping

There are different ways to adapt your child's lifestyle in coping with cleft lip and cleft palate.

Stress is normal when the gap between reality and expectations widens. Same can happen with you if your child is born with a cleft lip or cleft palate.

Here are some tips to help you handle the situation well:

  • Remember that it’s not your fault.
  • Utilize your energy to support and help your child.
  • Join support groups in your community or online, if any.

What you can do to help your child?

  • Always encourage your child. Do not focus on the cleft.
  • Mention your child's positive qualities that have no link with physical appearance.
  • Allow your child to make decisions on his/her own. This can boost your child's confidence.
  • Encourage your child to develop a confident attitude such as smiling and holding head up.
  • Make sure your child communicates well.

8 Risks and Complications

There are several risks and complications associated with cleft lip and cleft palate.

Risks

  • Family history
  • Race: In the United States, Native Americans are at the greatest risk and African-Americans at the lowest.
  • Sex: The risk is double in males.
  • Smoking, drinking or exposure to certain medications during
  • A diabetic mother may give birth to a baby with a cleft lip with or without a cleft palate.
  • Obese mother
  • Use of epilepsy medications, such as topiramate or valproic acid, during the first 3 months of pregnancy

Complications

  • Difficulty feeding
  • Ear infections and hearing loss
  • Dental problems
  • Speech difficulties: Nasal speaking voice
  • Social, emotional and behavioral problems
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