SUBJECT: Cleft Palate

QUESTION: My 2-year-old was born with a cleft palate and cleft lip. Doctors have performed surgery to correct her cleft lip but are saying she doesn't need to have her palate closed, especially because she doesn't have speech emerging. They believe the risks would be too great compared to the benefits. She has had numerous surgeries thus far including surgery to straighten her nose, release muscles in her eyes and putting in a G-tube. She has recovered fine from these surgeries.

She is making some sounds. She is moderately hearing impaired and wears a hearing aid. She responds to sounds; the hearing aid seems to be compensating for her hearing loss. My daughter is fed by g-tube (since birth) because of feeding difficulties. She has difficulty swallowing and can choke on her saliva. Speech therapy is not involved b/c she's not displaying speech now and the therapists don't see the value of their intervention at this time.

She weighs 15 lbs now and will start preschool in the fall.

Does the doctor's reasoning regarding the surgery make sense? Are palates left open? Wouldn't that impair speech development? Are there medical complications from leaving a palate open? Wouldn't the surgery perhaps help with her swallowing? I would eventually like to try to have her feed by mouth.

Shouldn't the speech therapists be getting involved with her at this point to evaluate swallowing, and develop programs to facilitate swallowing and speech?

RESPONSE: The doctor's reasoning would only be valid if the child was at great risk for general anesthesia, secondary to a cardiac complication, etc.

Palates are not commonly left open. An open palate can affect all salivary flow, normal breathing patterns, chewing, and swallowing mechanism adversely. Tongue positioning will be abnormal and if any articulation and speech is to be hoped for, it must be properly positioned in the mouth, not up in the nose via the open palate. The choking problem can lead to frequent aspirations and chronic lung disease. Mouth feeding and dietary diversity to enhance nutritional intake would all be hampered without the closure of the palate. In addition there is a risk for decreased intake and thus malnutrition.

She has had multiple surgeries without complications. I fail to see what the added risks are regarding this child, versus any other child with a cleft palate.

The child is making use of a hearing aid--wouldn't that be an indication that someone feels this child might make use of verbal communication to perhaps be an adjunct to signing, etc.?

I think a second opinion would be in order. She also may need a feeding/swallowing study (under fluoroscopy) to evaluate for dysfunction.

RM 2/20/2004

Her speech IS emerging. Babbling is the beginning of this process! I am concerned that no speech therapy is being provided to facilitate her progress and would recommend that her mom immediately consult another Speech and Language Pathologist (SLP), preferably one who is familiar with pre-speech/early speech and language development. Without this stimulation, she will not likely make the progress she could and should.

You also mentioned that she chokes on saliva. I would think that closing her cleft could help with this, but I also recommend that she see an SLP who does feeding therapy. With a lack of oral stimulation, she is at high risk for being orally hypersensitive when the transition is made to oral feeding. Although she may not be able to safely manage food at this point, she definitely should be stimulated (non-nutritively) orally. The SLP or occupational therapist could assist with this.

CC 2/20/2004