Booklet Summaries
Cleft Surgery
Cleft Palate and Hearing Loss
Audiovisual and Supplemental Resource Catalog
Cleft Lip and Cleft Palate: The First Four Years
Cleft Lip and Palate: The School-Aged Child
As You Get Older: Information for Teens Born with Cleft Lip and Palate
Cleft Lip and Palate: The Adult Patient
Feeding an Infant with a Cleft
The Genetics of Cleft Lip and Palate: Information for Families
Hemangiomas and Vascular Malformations
Managing Speech Problems: Physical Treatment of Velopharyngeal Dysfunction
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Cleft Surgery
2001, 8 pp.
This full-color brochure provides general information about the primary cleft lip and cleft palate surgeries for infants. Complete with drawings explaining the surgical procedures and “before and after” photos, this brochure addresses general considerations about surgery, post-operative care, and a list of questions to ask your surgeon.
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Cleft Palate and Hearing Loss
2002, 8pp.
This booklet provides information on types of hearing loss, middle ear disease and its treatment, and speech concerns resulting from hearing problems.
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Audiovisual and Supplemental Resource Catalog
1998, 51 pp.
This catalog is a compilation of the audio and video resources produced by private hospitals and organizations all over the country. It includes general resources on cleft lip and palate, family-centered care, feeding, genetics, psychosocial issues, speech, surgery and related syndromes. Materials are to be ordered directly from their producers!
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Cleft Lip and Cleft Palate: The First Four Years
1998 Revision, 24 pp.
This booklet provides a basic explanation of cleft lip and palate and an overview of the care that a baby born with a cleft requires. After introducing the concept of a cleft palate/craniofacial treatment team, it presents information on feeding (excerpted from Feeding an Infant with a Cleft), hearing testing, care of the ears, speech development, dental care, and a brief discussion of what to expect at the time of surgery. It also addresses psychological issues for both parents and children, including advice about how parents can tell others about the cleft, sources of support for parents, and information about preschool education. The booklet concludes with a glossary of the terms that parents will most likely hear and see in the first few years of their child’s life.
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Cleft Lip and Palate: The School-Aged Child
1998 Revision, 27 pp.
This booklet is divided into two sections, one addressing the medical concerns of a school-aged child born with a cleft and the other providing information about the school experience for these children. The medical section contains information about surgery, dental care, and speech, providing simple diagrams of how the speech mechanism may be affected by a cleft palate. The section entitled “Making School a Good Experience” features information on hearing, potential learning disabilities, and social skills. The booklet concludes with a letter from a teacher about having a child with a cleft in the class. (Note: This letter has been adapted into a separate factsheet called Letter to a Teacher, available elsewhere on this website.)
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As You Get Older: Information for Teens Born with Cleft Lip and Palate
20 pp., 2002
New in 2002, this brochure describes medical treatment and social skills that may be necessary for teens born with clefts. There are sections on surgery, braces, speech, and ear/nose/throat concerns, as well as on social relationships and planning for the future. The booklet concludes with three essays written by teens and a list of resources for more information.
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Cleft Lip and Palate: The Adult Patient
1998, 31 pp.
This booklet is designed to empower adults to make informed decisions about what additional treatment, if any, they want to seek out in relation to their clefts. It offers information on surgical, dental, hearing, and speech options, as well as psychosocial perspectives from an adult man and woman who were born with clefts. It also includes a section on genetics (excerpted from The Genetics of Cleft Lip and Palate: Information for Families) and advice on dealing with insurance companies. Finally, the booklet provides instructions for how adults can get in touch with either cleft palate/craniofacial treatment teams or parent/patient support groups in their area.
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Feeding an Infant with a Cleft
1999 Edition, 15 pp.
This booklet provides detailed instructions for feeding a newborn with cleft lip and/or palate. Starting with a discussion of the importance of the feeding experience for both parent and child, it goes on to explain why an infant with a cleft may have problems with feeding and what expectations parents may have for infant feeding habits. Recommendations about feeding positions, timing, and supplies are offered, with drawings and ordering information for the various bottles which are manufactured or can be adapted for babies with clefts. The booklet also includes some basic advice for mothers who are interested in breastfeeding and a brief discussion of post-operative feeding protocol. It concludes with a timetable for the introduction of solid foods into the baby’s diet.
Click here for an excerpt
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The Genetics of Cleft Lip and Palate: Information for Families
1998 Reprinting, 7 pp.
This booklet contains a brief overview of genetic biology and a summary of what is known about the causes of clefting. It features a graph for affected individuals, parents, and siblings, showing each group’s approximate chances of having a child with a cleft. The booklet also details the steps involved in a genetic evaluation, which can help a family to determine its own particular recurrence risks. (The information presented in this booklet is only applicable to patients with isolated cleft lip and/or palate, not for patients with clefts that occur as part of a syndrome.
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Hemangiomas and Vascular Malformations
1999, 25 pp. including 24 color photographs
This publication, co-produced by the Cleft Palate Foundation and AboutFace International, provides an overview of the various types of vascular birthmarks and the treatment options for each. This brochure covers hemangiomas (benign tumors of blood vessel cells), as well as the most common vascular malformations of the blood or lymph vessels. It includes a discussion of the problems associated with each type of vascular birthmark, an overview of various treatment approaches, and a section on social interaction for an individual with a facial birthmark. The brochure also contains an essay written by an adult patient, as well as a glossary of terms. The most exciting feature of this publication is the 24 before and after color photos of the various vascular birthmarks.
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Managing Speech Problems: Physical Treatment of Velopharyngeal Dysfunction
2004, 12pp.
This brochure describes additional procedures that may be needed to improve speech in people with repaired cleft palate. It explains surgical procedures including palate lengthening, pharyngeal flap, sphincter pharyngoplasty, and pharyngeal wall augmentation. Non-surgical prosthetic treatments are also described. (This information is most relevant to patients ages 4 to adult.)
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