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Cleft Lip/Cleft Palate FAQs

  • What are cleft lip and cleft palate?
    Cleft lip and cleft palate are facial birth conditions. A cleft lip occurs when part of the nasal process and part of the upper lip process don’t fuse before the baby is born. A cleft palate occurs when the palatal shelves (roof of mouth) don’t fuse before the baby is born. More than 5,000 babies are born in the United States each year with a cleft lip or palate, making it the most common facial birth condition.
  • What causes cleft lip and palate?
    The cause of cleft lip and/or palate is usually unknown. Cleft lip and/or palate can be genetic. If either parent has a cleft lip or palate, the chance increases that the baby will as well. If neither parent has a cleft lip or palate, yet they have a baby with a cleft lip or palate, the chances are higher that their babies born later will have it. Further details can be discussed with our geneticist.
  • What are the symptoms of cleft lip and palate?
    A cleft may occur on one side or both sides of the upper lip. The cleft may be isolated to the lip, or it may extend into the nose. For a cleft palate, the soft part of the palate at the back of the mouth may be involved, or the cleft may affect both the hard (bony) and soft palate. These conditions can cause feeding problems, altered dental development, trouble with speech and frequent ear infections.
  • How are cleft lip and palate diagnosed?
    The health care provider makes a diagnosis by a physical exam. The need for more tests depends on the patient.
  • How are cleft lip and palate treated?
    Surgery is performed to reconstruct the lip and/or palate. Other treatments depend on whether the cleft lip or palate causes issues. A cleft can make it hard for the baby to suck, feed and speak. Our speech and feeding therapists will describe ways to feed the baby and help treat speech issues. A cleft may also cause frequent ear infections, which can lead to hearing loss. We have otolaryngologists on our team to address any concerns with hearing and ear infections. We recommend all patients born with craniofacial conditions be followed by a multidisciplinary team to make sure all needs are addressed.

 



Additional Cleft Lip and Cleft Palate Clinic Resources

 

 

Our Approach to Treatment 
Our expert team provides continuous care for patients from birth until treatment is complete, often at age 21. With improved diagnostic information, many clefts are identified on prenatal ultrasounds. Families are provided information during prenatal consultations about the diagnosis and treatment objectives. After birth, we meet with families to evaluate your child, answer questions and discuss the treatment timeline. Our team is with you every step of the way. We also treat adults with craniofacial conditions.

Benefits of an Interdisciplinary Team Approach
The Carle method helps ensure comprehensive care. A child born with cleft lip, cleft palate or other craniofacial condition may have trouble with

  • Early feeding and nutrition. 
  • Middle ear problems.
  • Hearing loss. 
  • Speech and resonance (voice) delays. 
  • Dento-facial and orthodonitc abnormalities. 
  • Psychosocial adjustment. 

When appropriate, our team recommends speech-language therapy, psychological counseling, surgical intervention or dental treatment. We also make referrals to other healthcare professionals, including neurosurgeons, prosthodontists, orthodontists, oral and maxillofacial surgeons, otolaryngologists, plastic and reconstructive surgeons, general dentists, pedodontists and geneticists. Further developmental, medical or educational evaluations may be recommended. This comprehensive approach results in a patient and family-centered treatment plan that is designed to meet the individual needs of each patient.


What to Expect During a Prenatal Consultation

If a craniofacial condition is identified during pregnancy, your family has the option to meet with part of the Cleft Lip and Palate Team prior to delivery. This appointment may be virtual or in person and often includes the craniofacial surgeon, feeding and speech therapist, neonatologist, social worker, obstetrician, maternal fetal medicine doctor and nurse coordinator. Our goal is to share with you what to expect after delivery and in the first stages of care. This will be an opportunity to meet and ask questions of the surgeon and team of experts who will be caring for your child. The specific feeding needs of the baby with a cleft lip and/or palate will be discussed, and specialty feeding bottles will be demonstrated. You will be able to establish a connection with our care team so we can support you before and after your baby is born.


What to Expect After Your Baby Is Born

After your baby is born, they will be evaluated while in the hospital by a feeding specialist and a craniofacial surgeon. Providers will examine your child and discuss goals, treatment timeline and answer any questions you might have. Depending on how your baby does after birth, they may get to stay with you, or they may have to go to the neonatal intensive care unit (NICU) for more individualized care and attention. After your baby is discharged from the hospital, you can anticipate having a few follow-up visits to monitor growth and weight gain as well as answer any questions you may have.

Babies born with complete cleft lip and alveolus (tooth-bearing part of the jaw) or complete cleft lip and palate may be candidates for nasoalveolar molding (NAM). The NAM method is neonatal “orthodontics” that uses a custom acrylic retainer to move the alveolar segments closer, narrowing the cleft as well as molding the nasal cartilage. If you are interested in learning more about NAM or to find out if NAM is right for your baby, please call our office.

 
What to Expect During a Cleft Craniofacial Team Visit

It’s common for your child to only see the speech pathologist/feeding specialist and surgeon for the first few months of life. This keeps the appointments shorter and more tailored to their needs.
Once your baby is close to a year old, we will set up an evaluation appointment to meet our multidisciplinary team of experts. Our cleft team is approved through the American Cleft Palate-Craniofacial Association (ACPA). The following will take place during this initial appointment:

  • Audiologic and otologic (hearing) evaluation. 
  • Assessment of speech and resonance (voice).
  • Social Work review.
  • Complete physical exam. 
  • General dental and orthodontic exams.
  • Instructions in oral hygiene.
  • Exam by craniofacial surgeon and team members
After all team members have evaluated the patient, the providers meet to discuss the findings and suggest immediate and long-term recommendations. The recommendations are provided to the guardians, primary care provider, and other medical and dental professionals involved in your child’s care. 

 

Facebook Support Group
The Carle Cleft Lip and Palate Team currently manages a Cleft Craniofacial Facebook Support Group Page to provide an opportunity to share stories, seek support, ask questions and gain knowledge from medical professionals. You don’t need to be a Carle patient to join the group. For more information on the Cleft Craniofacial Facebook Support Group Page, click here
 

Contact Us
We accept referrals for primary rehabilitation as well as secondary rehabilitation for older children and adults. These referrals can be made by the family, doctor, school personnel, dentist, orthodontist, pedodontist, social worker, speech-language pathologist, audiologist, nurse, and agencies such as the Division of Specialized Care for Children. Referrals and requests for information should be directed to: Jayne M. Wachtel, MA, CCC-SLP, coordinator, (217) 383-4383.
 

Financial Assistance
Our team’s social worker and business office personnel can help in exploring possibilities for financial assistance. When indicated, referrals for financial and programming assistance will be made to agencies such as the Division of Specialized Care for Children (DSCC). Coverage for evaluations and recommended treatments may be provided by the patient's health insurance.


Meet Our Team
Ashley E. Manlove, DMD, MD, FACS, Director
Jayne M. Wachtel, MA, CCC-SLP, Coordinator
 
AUDIOLOGY
Marie Walser, AuD, CCC-A

CRANIOFACIAL SURGERY/ORAL MAXILLARY SURGERY
Ashley E. Manlove, DMD, MD, FACS
 
DENTAL HYGIENE
Bev Bermingham, RDH

DIVISION OF SPECIALIZED CARE FOR CHILDREN (DSCC)
Summer L. Puckett, MS, CCC-SLP, Representative
 
GENETICS
Luis Rohena, MD
Zohra Shad, MD
 
MATERNAL FETAL MEDICINE
Ralph J. Kehl, MD
 
NURSING
Allison Gaitros, BSN, RN
 
ORTHODONTICS
Robert W. Shafer, DDS
 
OTOLARYNGOLOGY
Ryan Porter, MD
Ronald C. Russo, MD
Brent A. Pearman, PA-C
 
PEDIATRICS
Stefanie Schroeder, DO

PEDIATRIC DENTISTRY
Chifan Cheng, DDS
 
SOCIAL WORK
Jeslyn Roat, LSW

SPEECH-LANGUAGE PATHOLOGY
Jayne M. Wachtel, MA, CCC-SLP
Claire Heyman, MS, CCC-SLP

SPEECH SCIENCE
David P. Kuehn, PhD, University of Illinois
 
We’ve been approved as a Cleft Palate Team by the Commission on Approval of Teams, according to the Standards for Cleft Palate and Craniofacial Teams. For more information, visit team-approval.org.


 

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