Cleft lip and palate are among the most common congenital anomalies. Approximately 1 newborn in 700 has cleft lip, cleft palate or both. The Cleft Clinic at Children’s provides comprehensive diagnostic and treatment services for children up to age 21 who have:
- A cleft lip and/or palate
- A submucous cleft palate
- Velopharyngeal dysfunction
What to expect during a Cleft Clinic Evaluation
During a Cleft Clinic evaluation, your child will be seen by a multi-disciplinary team that may include:
- Child Psychology
- Genetic Counseling
- Oral and Maxillofacial Surgery
- Pediatric Dentistry
- Pediatric Nurse Practitioner
- Pediatric Otolaryngology/Ear Nose & Throat (ENT)
- Plastic Surgery
- Speech-Language Pathology
If your child is scheduled for a full-day evaluation please plan on spending the day with us. The morning will consist of one-on-one evaluations with the audiologist, dentist, nurse practitioner, speech-language pathologist and child psychologist (if needed). Additional procedures such as dental x-rays may also be completed during the morning. Before lunch, our clinic assistant will provide a time for your afternoon team evaluation.
The afternoon team evaluation is typically 20 minutes in length and includes an exam by the plastic surgeon, ENT, oral surgeon and orthodontist. During that time, the plan of care will be discussed and recommendations will be reviewed. A genetic counselor will also be available to answer questions you or your child may have.
At the end of your child’s visit, you will receive a summary of recommendations including referral information and follow-up appointments. A copy of the team report will be sent to you, your child’s primary care provider, and other providers at your request.
Afternoon-only Evaluations: Afternoon-only evaluations are typically recommended for older children without speech or hearing concerns. It is typically 20 minutes in length and includes a brief interview with the nurse practitioner, a speech screen and an exam by the plastic surgeon, ENT, oral surgeon and orthodontist. During that time, the plan of care will be discussed and recommendations will be reviewed. A genetic counselor will also be available to answer questions you or your child may have.
At the end of your child’s visit, you will receive a summary of recommendations including referral information and follow-up appointments. A copy of the team report will be sent to you, your child’s primary care provider and other providers at your request.
Speech-only Evaluations: Speech-only Cleft Clinic visits are typically recommended for patients who are being monitored for ongoing resonance concerns and/or possible “speech” surgery. It is a 20-30 minute appointment with the speech-language pathologist that focuses on evaluating your child’s speech and resonance, monitoring progress in therapy and making recommendations regarding speech therapy and/or surgical intervention to improve communication skills.
What to bring to a Cleft Clinic Evaluation
- Recent dental x-rays
- Copies of recent medical records from non-Children’s providers
- Speech therapy records including IEP and/or outpatient progress notes
What should I expect during my child’s first year of life?
- 1-2 weeks of age: Meet with your child’s surgeon (if your baby was not seen by the surgeon during initial hospitalization after birth), Feeding Consult
- 3 weeks: Weight check with primary doctor
- 4 weeks: Weight check
- 6 weeks: Weight check at primary doctor’s office. If weight gain is a concern at this time, a feeding consult is recommended.
- 8 weeks: Well child check with your child’s primary doctor
- 10-12 weeks: Lip repair (if your baby has a cleft lip)
- 4 months: Well child check with your child’s primary doctor
- 6 months: Well child check with your child’s primary doctor. Feeding consult to assist with introduction of a free flowing cup in preparation for palate repair). This visit is often coordinated with post-operative check for PE (ear) tubes.
- 8 months: If your baby has a cleft palate, they should be drinking from a free flowing cup by 8 months of age. A feeding consult is recommended if cup drinking is challenging.
- 10-12 months: Palate repair
- 12 months: Initial Cleft Clinic visit for children with cleft lip only. For children with cleft palate (without or without cleft lip), the initial team visit is scheduled 2-3 months after the palate is repaired.
Frequently Asked Questions
Why does my child need to see the Speech Pathologist if he/she is already in speech therapy?
The Cleft Clinic Speech-Language Pathologists (SLP) are specialists in the unique concerns associated with cleft palate. During an evaluation, the team SLP will talk to your child to evaluate his/her articulation and resonance and review your child’s therapy plan. The team SLPs work closely with speech pathologists in the community to ensure that your child is receiving appropriate speech therapy. In addition, the SLP will serve as a liaison between your child’s speech pathologist and the Cleft Palate Team.
Can you help me find a pediatric dentist?
Yes, we can. The Cleft & Craniofacial Center works with a number of pediatric dentists throughout the state and we can recommend them to you. Please ask one of the staff for their business card.
My child will need orthodontic expansion before undergoing bone grafting. Is this treatment covered by my dental or my medical insurance?
Orthodontic treatment needed due to clefting is typically covered under your medical insurance in Minnesota. Please discuss with your orthodontic office before your treatment begins.
Is clefting genetic?
The exact cause of clefting is unknown and in most cases no single factor can be identified as the cause. The majority of isolated clefts appear to be an interaction between individual genes and other factors. Genetic counseling is available through our Cleft & Craniofacial Center if you have further questions or desire a complete evaluation.
What types of surgery/procedures do child with cleft lip and palate typically require?
Treatment for cleft lip and/or palate is highly individualized. The list below provides a general outline of some of the more common procedures associated with cleft care. Your child may not require all of these procedures.
- Cleft lip repair: 10-12 weeks of age
- Cleft palate repair: 10-12 months of age
- Ear tubes: Varies, typically the first set is placed at 6 months of age
- “Speech” surgery (improves resonance for speech): 3-5 years of age
- Maxillary expansion (completed by an orthodontist prior to bone grafting): 5-8 years of age
- Bone grafting (repairs the alveolar cleft): 5-8 years of age
- Nasal revision: highly individualized
- Lip revision: highly individualized
- Jaw Advancement (due to address mid-face deficiency or recessed lower jaw): Typically completed when growth is complete. For girls that is typically some time between 16 and 18 years of age. For boys, it is typically sometime after age 18. If your child would benefit from this procedure, the orthodontist and oral surgeon will be monitoring growth closely.
How can I address teasing or questions regarding my child’s appearance?
It is important for parents to remember that research suggest that the majority of children do not have adjustment difficulties and are able to function in a manner typical for their age. Provide your child with opportunities for success and a feeling of competence. Help your child early on learn to manage discomfort and teasing (using words rather than aggressive patterns) and remember it won’t help for you to be overprotective.
How should we tell our child about cleft and why they have it?
Our team can recommend several age specific resources and stories from cleft patients to help explain clefting to your child or others. Please ask a member of the cleft clinic for this information.