Many of the children seen at the IRPS are in need of treatment for a cleft. Cleft palate/lip is the most common birth defect to the face,[1] and it occurs in about one in 700 live births worldwide. It is a condition in which the two plates of the skull that form the hard palate (roof of the mouth) are not completely joined.[2] While surgery can repair this defect, many of the children whom are treated are at risk of developing problems with their speech.

In February of this year, the NFFR received a generous grant from the Axe-Houghton Foundation, an organization whose “principal purposes are to foster and encourage an appreciation of the English language, with major emphasis on the spoken language.”[3] In a letter to Axe-Houghton, Whitney Burnett, Executive Director of the NFFR, described just how this grant is being used to improve the lives of many children treated at the IRPS.

“In our clinics, patients are provided a diagnosis, evaluation and a short and long treatment plan by an interdisciplinary team.  All patients in these clinics are given articulation/resonance screenings when they attend their team conference.  About 90% of children with cleft lip and palate and cleft palate only are recommended to be seen for one-on-one evaluations.

These evaluations are done by our Speech Pathologist, Shelley Cohen, who takes about an hour with each patient. She uses all of the information she gleans to determine if she should recommend secondary surgery to the palate or if secondary surgery is unnecessary and non surgical means are sufficient. She may determine if more or less speech therapy would benefit the child and make recommendations for local therapists through the school, at home, or both.

Nationally 20-30% of children need additional surgery for resonance disorders. At the Institute, the average is 4%, which reflects the quality of the muscle repair that is done during the primary surgery by our cleft team.

The generous grant from Axe-Houghton allowed 42 patients to be evaluated and recommendations to be made that allowed those patients to develop comprehensible speech.  Hypernasal or muffled speech stigmatizes a child, prompts cruel teasing, and keeps a child from “fitting in” with peers. This hands-on care allowed these children to communicate better with the community around them so that they can enjoy a more confident and fulfilling life: the purpose and mission of the National Foundation for Facial Reconstruction.”

To Axe-Houghton – Thank you for your generosity. You have helped us maintain the highest level of care at the Institute. We are very grateful for your support.

[1] http://www.cdc.gov/ncbddd/bd/faq1.htm

[2] “Statistics by country for cleft palate”. WrongDiagnosis.com. http://www.wrongdiagnosis.com/c/cleft_palate/stats-country.htm. Retrieved 2007-04-24.

[3] http://foundationcenter.org/grantmaker/axehoughton/index.html
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