My child was born with a cleft lip/palate deformity, what do I need to know?

My child was born with a cleft lip/palate deformity, what do I need to know?

Cleft lip or palate is a facial defect causing a cleft that is either unilateral or bilateral. It is easily corrected surgically, and with special services like speech therapy, occupational therapy and a team approach these children do very well with complete recovery.

A facial cleft can occur in many different circumstances. It can be an isolated abnormality or part of a more generalized syndrome. It is imperative that a physician evaluates this child and determines if this cleft is nonsyndromic or syndromic and is associated with something more serious..

In the past the nonsyndromic cleft was considered the classic form with a genetic inheritance. Because genes are involved, the chance for a cleft lip and/or cleft palate to happen again in a family is increased, depending on how many people in the family have a cleft lip and/or cleft palate

The syndromic form may occur in a wide array of syndromes associated with (environmental, chromosomal, single-gene or unknown reasons.) These children usually have many other medical conditions associated with the cleft.

Environmental

Maternal seizures with anti-seizure medication usage (CL/CP)

Fetal alcohol syndrome (CP)

Amniotic band syndrome (CL/CP)

Chromosomal

Trisomies (CL/CP)

Single Gene disorders

Treacher Collins syndrome (CP)

Unknown

Cornelia de Lange Syndrome (CP)

Facial clefts are usually associated with the following problems

  1. Early feeding difficulties
  2. Recurrent ear infections
  3. Hearing and language delay
  4. Speech problems
  5. Hypernasality and articulation errors
  6. Dental and orthodontic complications

There may be many people involved in the team approach to the management of a cleft abnormality in children. The skills of many different areas are needed to help with the problems that can occur with cleft abnormalities. The following are some of the members of the team:

  • plastic/craniofacial surgeon – a surgeon with specialized in the treatment of skeletal abnormalities of the skull, facial bones, and soft tissue. He will be the one who actually performs the surgery and coordinate a surgical plan.
  • pediatrician – a physician who will follow the child as he/she grows and help coordinate the multiple specialists involved.
  • orthodontist – a dentist who evaluates the position and alignment of your child’s teeth
  • pediatric dentist – a dentist who evaluates and cares for your child’s teeth.
  • speech and language specialist – a professional who will perform a comprehensive speech evaluation to assess communicative abilities and who will closely monitor your child throughout all developmental stages.
  • otolaryngologist (ear-nose-throat specialist) – a physician who will assist in the evaluation and management of ear infections and hearing loss that may be side effects of your child’s cleft abnormality.
  • audiologist (hearing specialist) – a professional who will assist in the evaluation and management of hearing difficulties your child may have.
  • genetic counselor – a professional who reviews the medical and family history, as well as examines your child to help in diagnosis. A genetic counselor also counsels your family regarding risk for recurrence in future pregnancies.
  • nurse team coordinator – a registered nurse who combines experience in pediatric nursing with specialization in the care of your child and acts as liaison between your family and the cleft team.
  • social worker – a professional who provides guidance and counseling for your child and your family in dealing with the social and emotional aspects of a cleft abnormality and assists your family with community resources and referrals (e.g., support groups).

Treatment for cleft lip and cleft palate:

Treatment for these abnormalities includes surgery and a complete team approach to help with the multiple complications that can occur. Specific treatment will be determined by

  • your child’s age, overall health, and medical history
  • specific qualities of your child’s abnormality
  • your child’s tolerance for specific medications, procedures, or therapies
  • involvement of other body parts or systems
  • your opinion or preference

For most infants with cleft lip alone, the abnormality can be repaired within the first several months of life (usually when the baby is 10 to 12 pounds. The goal of this surgery is to correct the separation of the lip. Sometimes, a second operation is needed.

Cleft palate repairs are usually done between the ages of 9 and 18 months but before the age of 2. This is a more complicated surgery and is done when the baby is bigger and better able to tolerate the surgery. The goal of this surgery is to repair the roof of the mouth so that your child can eat and learn to talk normally. Sometimes, a second operation is needed.

After the surgery for cleft lip:

Your child may be irritable following surgery. Your child may also have to wear padded restraints on his/her elbows to prevent him/her from rubbing at the stitches and surgery site.

Stitches either will dissolve on their own or will be removed in approximately five to seven days. Specific instructions will be given to you regarding how to feed your child after the surgery. The scar will gradually fade, but it will never completely disappear.

After the surgery for cleft palate:

This surgery is usually more involved and can cause more discomfort and pain for the child than cleft lip surgery. As a result of the pain and the location of the surgery, your child may not eat and drink as usual. The child may require intravenous fluids until he/she can drink adequately.

  • Your child will have stitches on the palate where the cleft was repaired. The stitches will dissolve after several days.
  • There may be some bloody drainage coming from the nose and mouth.
  • There will be some swelling at the surgery site.
  • For two to three days, your child will feel mild pain that can be relieved by a non-aspirin pain medication.
  • Many infants show signs of nasal congestion after surgery. These signs may include nasal snorting, mouth breathing, and decreased appetite.
  • Your child will be on antibiotics to prevent infection while in the hospital.
  • Your child may be in the hospital for one to three days,

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Diet after surgery:

The child should be placed on a soft diet for seven to 10 days after surgery. For older infants and children, age-appropriate soft foods may include strained baby foods, popsicles, yogurt, mashed potatoes, and gelatin. Note: your child should not use a straw or pacifier, as both could damage the surgical repair.

Activity after surgery:

Your child can walk or play calmly after surgery. He/she should not run or engage in rough play (wrestling, climbing) or play with “mouth toys” for one to two weeks after surgery.

Written By George Rogu M.D. Medical Director and Founder of Adoptiondoctors.com and Adoptioneducationclasses.com