To The Parents Of An Infant Born With A Cleft Of The Lip And/Or Palate: Guidelines For Care

Barbara M. Russell R.N., M.H.P., New England Medical Center, Boston, MA

Written for Prescription Parents. Ms. Russell can be contacted at Department of Plastic Surgery, New England Medical Center, 171 Harrison Ave., Boston, MA 02111.

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The following information may be helpful to parents in gaining an overview of the immediate and long term management of their child born with a cleft. It is important to remember that although treatment protocols may vary, it is essential that all team members be trained and experienced in the care of patients with clefts.

THE FIRST YEAR OF LIFE

Ideally every child born with a cleft should be referred to a cleft palate clinic where there are specialists available to care for their child. This should occur as soon after discharge as possible.

The initial evaluations should include:

Pediatrics/Genetics Evaluation -- This is done by a physician with specialized training who will examine the infant for any other abnormalities that may be associated with a cleft. The results of this evaluation may influence the treatment plan.

Feeding Evaluation -- There is usually one member of the team who specializes in teaching parents how to feed their infant. This may be a nurse, speech pathologist or occupational therapist. There are a number of feeding devices available to feed children with clefts, and the feeding specialist will teach parents the technique used in their clinic.

At the conclusion of the feeding evaluation, parents should feel that they are able to provide an effective, satisfying and nutritious feeding for their infant.

Plastic Surgery Evaluation -- The plastic surgeon on your team should be experienced in treating children with clefts. The surgeon will evaluate your child and outline a surgical plan. The timing of the surgery is at the discretion of the surgeon based on his experience. Depending on the type of cleft your child has, the surgeon may recommend that other members of the team become involved at the time of this initial evaluation.

Infants born with a cleft palate have persistent middle ear fluid; and if they develop an ear infection, it may be more difficult to treat. This is something that can be handled by your local pediatrician. If the infection does not clear after an appropriate course of treatment, your child should be referred to the otolaryngologist on your team.

It is recommend that parents of a child born with a cleft receive genetic counseling to review recurrence risks. This can be arranged at a time that is convenient for the family.

POST-PALATE CLOSURE

Usually two or three months following surgical closure the child is evaluated by the following specialists for their specific recommendations and treatment. Your child should be followed annually by these specialists, who are referred to as the cleft palate team.

The specialists that comprise a cleft palate team include:

Audiologist -- to test the child's hearing and report their findings to the otolaryngologist who will decide if further intervention is warranted.

Feeding Specialist -- will teach the parents how to feed the child in the newborn period and in preparation for surgery.

Orthodontist -- evaluates the timing of intervention of orthodontic care including palatal expansion, braces and space maintainers.

Otolaryngologist -- evaluates middle ear function and need for any further intervention

Pedodontics -- provides pre-surgical appliances when appropriate, and evaluates the need for restorative care.

Pediatrician/Geneticist -- evaluates the child for any associated abnormalities that may be associated with a cleft and makes the appropriate referrals.

Plastic Surgeon -- will perform surgeries and will evaluate results of those surgeries and be involved in long term management regarding further surgical interventions.

Speech Pathologist -- evaluates the child's speech and language development and outlines therapy that will correct specific problems if present.

The team members communicate their findings, recommendations and treatment plans to each other and this information is shared with the parents. Long term follow-up will vary depending on the type of cleft your child had,

Parents and the child as they become older should always feel free to contact any member of the team with any questions or concern that they may have. 



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