CLINICAL REPORT

Guidance for the Clinician in Rendering Pediatric Care

The Primary Care Pediatrician Charlotte W. Lewis, MD, MPH, FAAP,a​ Lisa S. Jacob, DDS, MS,​b Christoph U. Lehmann,and MD, the FAAP, FACMI, Care​c SECTION ON ORALof HEALTH Children With Cleft Lip and/or Cleft Palate Orofacial clefts, specifically cleft lip and/or cleft palate (CL/P), are among the abstract most common congenital anomalies. CL/P vary in their location and severity and comprise 3 overarching groups: cleft lip (CL), cleft lip with cleft palate (CLP), and cleft palate alone (CP). CL/P may be associated with one of many syndromes that could further complicate a child’s needs. Care of patients aDivision of General Pediatrics and Hospital Medicine, Department of with CL/P spans prenatal diagnosis into adulthood. The appropriate timing Pediatrics, University of Washington School of Medicine and Seattle Children’s Hospital, Seattle, Washington; bGeorgetown Pediatric and order of specific cleft-related care are important factors for optimizing Dentistry and Orthodontics, Georgetown, Texas; and Departments of cBiomedical Informatics and Pediatrics, Vanderbilt University Medical outcomes; however, care should be individualized to meet the specific needs Center, Nashville, Tennessee of each patient and family. Children with CL/P should receive their specialty All three authors participated extensively in developing, researching, cleft-related care from a multidisciplinary cleft or craniofacial team with and writing the manuscript and revising it based on reviewers’ comments; Dr Lehmann made additional revisions after review by the sufficient patient and surgical volume to promote successful outcomes. board of directors. The primary care pediatrician at the child’s medical home has an essential This document is copyrighted and is property of the American role in making a timely diagnosis and referral; providing ongoing health Academy of Pediatrics and its Board of Directors. All authors have filed conflict of interest statements with the American Academy care maintenance, anticipatory guidance, and acute care; and functioning of Pediatrics. Any conflicts have been resolved through a process as an advocate for the patient and a liaison between the family and the approved by the Board of Directors. The American Academy of Pediatrics has neither solicited nor accepted any commercial craniofacial/cleft team. This document provides background on CL/P and involvement in the development of the content of this publication. multidisciplinary team care, information about typical timing and order of Clinical reports from the American Academy of Pediatrics benefit from cleft-related care, and recommendations for cleft/craniofacial teams and expertise and resources of liaisons and internal (AAP) and external reviewers. However, clinical reports from the American Academy of primary care pediatricians in the care of children with CL/P. Pediatrics may not reflect the views of the liaisons or the organizations or government agencies that they represent.

The guidance in this report does not indicate an exclusive course of treatment or serve as a standard of medical care. Variations, taking into account individual circumstances, may be appropriate. Introduction All clinical reports from the American Academy of Pediatrics automatically expire 5 years after publication unless reaffirmed, revised, or retired at or before that time.

Clefts of the lip and palate (CL/P) are a heterogeneous group of disorders DOI: 10.1542/peds.2017-0628 affecting the1 structure of the face and oral cavity (Fig 1A presents normal structure).‍ These disorders have been divided into 3 general categories To cite: Lewis CW, Jacob LS, Lehmann CU, AAP SECTION ON with variability in phenotype (Tables 1 and 2): (1) cleft palate alone (CP ORAL HEALTH. The Primary Care Pediatrician and the Care [Fig 1B]); (2) unilateral or bilateral cleft lip with or without cleft alveolus of Children With Cleft Lip and/or Cleft Palate. Pediatrics. (CL ± A [Fig 1 C and D, respectively]); and (3) unilateral or bilateral cleft 2017;139(5):e20170628 lip and cleft palate (CLP [Fig 1 E and F]).‍

Downloaded from www.aappublications.org/news by guest on October 2, 2021 PEDIATRICS Volume 139, number 5, May 2017:e20170628 FROM THE AMERICAN ACADEMY OF PEDIATRICS TABLE 1 Standard Accepted Cleft Classifications and Abbreviations Cleft Classification Abbreviation Exclusion Cleft lip CL Excludes (1) cleft lip and alveolus; (2) cleft lip and palate; and (3) cleft palate alone Cleft lip with or without cleft alveolus CL ± A Excludes (1) cleft lip and palate; and (2) cleft palate alone Cleft palate alone CP Excludes (1) cleft lip; and (2) cleft lip and palate Cleft lip and palate CLP Excludes (1) cleft lip; and (2) cleft palate alone Cleft lip with or without cleft palate CL ± P Excludes cleft palate alone Cleft palate with or without cleft lip CP ± CL Excludes cleft lip and cleft lip and alveolus Cleft lip and/or cleft palate CL/P No exclusion Modified from Huang AH, Patel KB, Maschhoff CW, et al. Occlusal classification in relation to original cleft width in patients with unilateral cleft lip and palate. Cleft Palate Craniofac J. 2015;52(5):574-578.

TABLE 2 Associations and Other Features of CL/P According to Phenotype Associations and Other Cleft Phenotype Features Cleft Lip With or Without Cleft Palate (∼1 in 600–700 US Births) CP (∼1 in 1000–1500 US Births) Sex Male:​female ratio 2:12 Male:​female ratio 1:22 Racial/ethnic Most common in American Indian, Alaska Native, Latino, No racial/ethnic association and Asian subjects (1/300–1/500)3; intermediate in white subjects (1/1000); and less common in black subjects (1/2500)1 Syndrome 30% associated with a syndrome1 50% associated with a syndrome1 Location CLP is about twice as common as CL ± A.4 Usually, the CL is CP may involve the entire secondary palate (posterior to the contiguous with the cleft alveolus and CP. Less commonly, incisive foramen) or a more posterior portion of the palate. A there may be a CL that is separated from the CP by submucosal cleft palate is a defect in the palatal musculature apparently normal alveolar ridge and/or anterior palate with intact overlying mucosa, and the effects on feeding, Eustachian tube function, and speech may be similar to those in children with an overt CP Unilateral vs bilateral and Approximately 75% of clefts involving the lip are unilateral.5 CP is usually in the midline sidedness Among unilateral CL ± P, those affecting the left side are twice as common as the right side5

From an embryologic perspective, CL/P results from failure of the maxillary first branchial arch to

complete fusion with the frontonasal6 process in early gestation.‍ Historically, CL, CL ± A, and CL ± P have been considered variants of

the same7 anomaly that only differ in severity,​ although this topic remains

an area of active research.‍ CP 6alone is an entity distinct from CL ± P.‍ Clefts of the lip are subcategorized as complete or incomplete, depending on the degree that the cleft extends through the lip and into the nose (Fig 2).‍

FIGURE 1 Epidemiology and Etiology of CL/P Types of CL/P. A, Normal. B, Cleft palate alone. C, Unilateral cleft lip and alveolus. D, Bilateral cleft lip and alveolus. E, Unilateral cleft lip and palate. F, Bilateral cleft lip and palate. CL/P is one of the most frequently observed congenital anomalies, Rarer forms of orofacial clefting, such team care.‍ The present article focuses occurring in approximately 1 in as oblique facial clefts and median on the more common forms of 600 to 700 births8 in the United clefts, require specialized craniofacial orofacial clefting (specifically CL/P).‍ States (Table 2).‍ The Centers for Downloaded from www.aappublications.org/news by guest on October 2, 2021 e2 FROM THE AMERICAN ACADEMY OF PEDIATRICS FIGURE 3 Approximate distribution of CL/P in the United States.

10 not fit typical Mendelian genetics.‍ The recurrence risk of nonsyndromic CL ± P in subsequent siblings and offspring of the proband child is considered to be approximately 3% to 5%.‍ The recurrence risk of nonsyndromic CP is estimated

to be 2% to10– 3%12 in siblings and offspring.‍ ‍ ‍ The risk of recurrence of either CL ± P or isolated CP is further increased if more than one first-degree relative has a cleft.‍ Specific genetic–environmental interactions are known to increase the risk of nonsyndromic CL/P.‍ For example, although smoking during FIGURE 2 pregnancy doubles the risk of cleft Incomplete versus bilateral unilateral cleft lip (bilateral cleft lip may be incomplete or complete or lip, women with a specific MSX1 a combination). allele who smoke have a threefold13 risk of having a child with CL/P.‍

Folic acid is important for the Disease Control and Prevention 30% of children with CL ± P and 50% prevention of neural tube defects, recently estimated that of children with CP alone have an 1 but there is inconclusive evidence approximately 2650 infants are born associated syndrome.‍ At least 275 that preconception folic acid with a CP and 4440 infants are born syndromes with orofacial clefting as a supplementation decreases the risk with a CL ± P in the United States primary feature have been identified; 9 of oral clefting.‍ A recent population- annually (Fig 3).‍ Certain racial the causes include mutation of a based study from 1999 to 2013 groups, including American Indian/ single genetic locus, chromosomal 5 in Norway concluded that there Alaska Native, and Asian subjects, abnormalities, and teratogens.‍ was no statistically significant have a higher incidence of CL ± Nonsyndromic CL/P is a association between maternal folate P than do white or black 14 2 multifactorial condition caused use and risk of isolated oral clefts.‍ subjects.‍ by a combination of genetic and However, the investigators reported Children with CL ± P are at lower environmental factors.‍ Although a lower risk for oral clefts that risk of an underlying syndrome than additional family members may have occurred in combination with other children with CP alone.‍ An estimated CL/P, the pattern of inheritance does malformations, such as heart, limb, Downloaded from www.aappublications.org/news by guest on October 2, 2021 PEDIATRICS Volume 139, number 5, May 2017 e3 FIGURE 4 Timeline of cleft care, including surgical and orthodontic interventions. Various cleft/craniofacial teams may differ slightly in the timing and sequence of care from this time line, and not all children with CL/P require all of these procedures. Light blue in graphic indicates cleft-related surgery; green indicates orthodontics; and turquoise indicates dental. NAM, nasoalveolar molding or other pre-orthopedic appliances.

Prevention. Preconception folic acid supplementation may also have a or urinary tract congenital anomalies protective effect against some types affiliated with the American Cleft (adjusted risk ratio: 0.‍63 [95% of CL/P. Palate–Craniofacial Association confidenceThe American interval: Academy 0.‍45–0 of.‍ 88]).‍ (ACPA), which provides guidelines Pediatrics recommends that and standards for cleft-related and all women of childbearing age Team Care craniofacial care.‍ The ACPA has consume 0.4 mg (400 µg) of folic established 2 categories of teams: 15 acid daily to prevent 2 common and cleft teams and craniofacial teams.‍ serious birth defects (spina bifida Cleft teams generally provide Primary care pediatricians have and anencephaly) according to the care only to children with CL/P; an important role in helping US Public Health Service and the craniofacial teams have a broader families of children with CL/P Centers for Disease Control and level of technical and professional find multidisciplinary team care.‍ expertise, and they generally Many cleft/craniofacial teams are provide care for a larger number of patients with CL/P as well as those with more complex craniofacial conditions (eg, craniosynostosis, craniofacial microsomia, oblique facial clefts).‍ Cleft and craniofacial teams are groups of experienced and qualified professionals from medical, surgical, dental, and allied health disciplines working in an interdisciplinary and coordinated system.‍ Coordination of care is necessary because of the complexity of the medical, surgical, dental,

and social factors that must be 16 considered in treatment decisions.‍ Primary disciplines represented on the team usually include audiology, dentistry, genetics, pediatrics, nursing, nutrition, oral surgery, orthodontics, otolaryngology, plastic and reconstructive surgery, psychology, social work, and speech pathology.‍ A multidisciplinary team is needed because CL/P outcomes FIGURE 5 Pierre Robin sequence. occur in the surgical, speech, hearing, dental, psychosocial, and cognitive domains.‍ Downloaded from www.aappublications.org/news by guest on October 2, 2021 e4 FROM THE AMERICAN ACADEMY OF PEDIATRICS birth and continues until skeletal maturity has been reached, at which point the final stage of reconstructive surgery can be performed.‍ Proper timing of interventions is critical because of the interaction of facial growth, dental occlusion, and speech.‍ Although reconstructive surgeries are important milestones for children with CL/P, it is important that the ongoing focus remain on the medical and psychosocial issues that these children and their families face.‍ The primary care pediatrician has an essential role in providing longitudinal and holistic attention to the well-being of the child with CL/P and his or her family.‍ More than 8000 primary CL and CP repair procedures are performed in the United States each year, typically during the first 1.‍5 years of life.‍ In the United Kingdom, cross-sectional studies indicate that centralization and multidisciplinary cleft care, as well as higher patient volume, predict better long-term functional and

aesthetic17–22 outcomes in children with CL/P.‍ ‍ ‍ Successful cleft-related surgical outcomes are improvements in appearance, speech intelligibility, chewing, sleep, and breathing.‍ Good outcomes from initial procedures may reduce the need for secondary surgeries during patients’ childhood, adolescence,The American and Academy beyond .‍of Pediatrics recommends that children born with CL/P receive coordinated care through a multidisciplinary cleft or craniofacial team.

FIGURE 6 Cleft feeders. Oral Health and Dental Care for Children With Orofacial Clefts

15 The goal of the cleft/craniofacial psychological needs.‍”‍ Although Dental care and orthodontic care team, as articulated by the ACPA, is this overarching goal is consistent are particularly important for “to ensure that care is provided in across teams, there is some degree children with CL/P because oral a coordinated, consistent manner of variability between teams in health plays a significant role in with the proper sequencing of timing, order, and choice of specific cleft-related outcomes.‍ In addition evaluations and treatments within procedure.‍ to being susceptible to typical caries the framework of the patient’s Cleft/craniofacial team care usually risk factors, children with CL/P face overall developmental, medical, and begins prenatally or shortly after additional potential risk factors for Downloaded from www.aappublications.org/news by guest on October 2, 2021 PEDIATRICS Volume 139, number 5, May 2017 e5 TABLE 3 Areas for Specific Attention According to Age for Children With CL/P Beyond the Newborn Period36 Stage Age Range Recommendation Younger infant 3–6 mo • CL repair • Regular nutrition, growth, development, psychosocial, sleep, speech and hearing, and oral health evaluation, management and anticipatory guidance Older infant/toddler 7–23 mo • Reinforce importance of using fluoride toothpaste twice daily, community water fluoridation, and regular professional dental care (at every age) • Fluoride varnish at least twice yearly • Palate repair typically at 9–18 mo. Tympanostomy tubes may be placed for children with CP who have middle ear fluid • Speech evaluation • First dental visit occurs when first tooth erupts or within the first year of life • Regular nutrition, growth, development, psychosocial, sleep, speech and hearing, and oral health evaluation, management, and anticipatory guidance Early childhood 2–5 y • Reinforce importance of using fluoride toothpaste twice daily, community water fluoridation, and regular professional dental care (at every age) • Fluoride varnish at least twice yearly • Regular team visits • Regular nutrition, growth, development, psychosocial, sleep, speech and hearing, and oral health evaluation, management, and anticipatory guidance • Dental visits every 3–6 mo • Possible lip and/or nose revision • Palate or pharyngeal surgery for speech may be needed in the setting of VPI Later childhood 6–11 y • Consult orthodontist to determine if palate expansion or braces needed (first phase) • Ongoing facial growth and occlusal assessment • Discuss with surgeon need for alveolar bone graft surgery • Continue speech therapy if needed • Regular dental visits and ongoing oral health anticipatory guidance • Regular nutrition, growth, development, psychosocial, sleep, speech and hearing evaluation Adolescence 12–18 y • Regular nutrition, growth, development, psychosocial, sleep, speech and hearing, and oral health evaluation, management, and anticipatory guidance • Possible lip revision • Second phase orthodontic treatment • Jaw surgery may be needed • Continue regular dental visits • Possible septorhinoplasty • Genetic counseling Adulthood ≥19 y • Final surgeries • Transition to adult care Source: Lisa S. Jacob, DDS.

caries and other oral disease that toothbrushing and flossing more care pediatrician.‍ Natal teeth, are specific23 to their condition and difficult.‍ which are teeth present at birth, treatment.‍ These risks include the are more common in children with There is also overlap between following: (1) enamel hypoplasia, CL ± P.‍ Furthermore, children born population groups at risk for CL/P increasing the risk of dental decay with CL/P are at increased risk for and for early childhood caries (ECC).‍ in affected teeth; (2) structural congenital dental anomalies, such American Indian/Alaska Native anomalies that favor the formation as supernumerary teeth, missing individuals are at higher risk for both of retention niches for food residues teeth, and hypodontia.‍ Primary teeth ECC and CL ± P.‍ Other population and which impair self-cleansing of may erupt ectopically, for example, groups at higher risk for ECC are the teeth; (3) devices in the mouth in the cleft site or into the palate, children of lower socioeconomic (eg, palatal expanders, orthodontic or dental eruption may be delayed.‍ status; relative to the pediatric brackets and wires, obturators, The appearance of crooked primary population as a whole, more retainers), which become colonized teeth, a common finding in children children with CL/P are Medicaid with cariogenic bacteria and that can with CL/P, might concern parents.‍ 24 insured (E.‍ Wallace, PhD, personal interfere with oral hygiene ; and Parents should be reassured that communication, 2016), which is a (4) tight scars after surgeries that orthodontic treatment is part of cleft- marker for lower income status.‍ restrict space in the oral vestibule, related care and is usually initiated as resulting in disturbed occlusion Parents may voice concerns about the permanent teeth begin to erupt.‍ and articulation and making their child’s teeth to their primary In the presence of an alveolar (gum Downloaded from www.aappublications.org/news by guest on October 2, 2021 e6 FROM THE AMERICAN ACADEMY OF PEDIATRICS TABLE 4 Recommendations for Care of Children With CL/P Developmental Stage Recommendation Prenatal care All women of childbearing age should consume 0.4 mg (400 µg) of folic acid daily to prevent spina bifida and anencephaly Newborn care Children born with CL/P should receive coordinated care through a multidisciplinary cleft or craniofacial team Every effort should be made to visualize the palate during the initial newborn examination to exclude presence of a CP Newborn infants born with CL/P who have persistent feeding problems should receive prompt consultation with or transfer of care to a cleft/craniofacial specialist Newborn infants with CL/P should be seen for early newborn follow-up by their primary care pediatrician and evaluated by a cleft/ craniofacial specialist or team as soon as possible after discharge from birth hospitalization, ideally within 1 wk of discharge Infants with a CP need a special feeding device and the support of a feeding therapist, certified lactation consultant, and/or nurse experienced in feeding children with CP. Infants with CL ± A can often breastfeed with attention to position and latch Early initiation of dental care (before age 1 y) is important for children with CL/P because oral health influences craniofacial treatment and outcomes Infants and children, and especially those with CL/P, should have their teeth brushed twice daily using fluoride toothpaste and, where available, drink optimally fluoridated water. Children at high risk for dental caries, including children with CL/P, should receive at least twice-yearly fluoride varnish applications beginning with the first tooth eruption Early childhood care Cleft/craniofacial teams must be advocates for children with CL/P who are Medicaid insured or whose family cannot afford out-of- pocket payments so that these children can obtain timely, appropriate, and equitable cleft-related reconstructive surgery, and dental, orthodontic, and prosthodontic care Early assessment and regular monitoring by craniofacial experts in partnership with the primary care pediatrician are needed to ensure the health and safety of infants and young children with Pierre Robin sequence Children with CP need regular audiologic evaluation and otolaryngology assessment as part of cleft/craniofacial team care Childhood care Children with CL/P and their families should be offered psychosocial support from specialists such as child life professionals, particularly around times of surgery Children with CP ± CL need regular speech assessment by a speech and language specialist with expertise in detecting and evaluating VPI. Primary care pediatricians should be aware that VPI may require surgical management; in these cases, VPI will not improve with speech therapy alone Adolescent care Transitioning the care of a patient with CL/P to adult care requires individualized planning and referrals. When transitioning, patients need a detailed summary of their cleft/craniofacial team care and surgery as well as information about their other special needs

line) cleft, it is particularly important involvement in cleft care is needed important interrelationship and that the primary teeth not be moved for monitoring facial growth and interdependence between dental and with orthodontic treatment because dental eruption to assist in the orthodontic care and reconstructive such movement may adversely affect planning and timing of surgical surgery for children with CL/P from the blood supply of teeth adjacent to procedures.‍ This approach is early in life into young adulthood are the cleft.‍ particularly important for the shown in Fig 4.‍ Dental and orthodontic care may alveolar bone graft (ie, the graft Access to orthodontic care for be provided as part of the cleft/ to fill in the alveolar cleft), which children with CL/P who are uninsured craniofacial team care or, with some needs to be timed to coincide with or publicly insured or who live in rural teams, patients may be directed the eruption of certain permanent areas can be problematic.‍ In a 2004 to community-based dental and teeth (usually at 8–10 years of age) Washington state survey, very few orthodontic providers.‍ Good oral to maximize the chance for graft orthodontists (approximately 2%) health, ideally resulting from regular success.‍ Orthodontic treatment accepted Medicaid, and those who home oral hygiene and professional is also necessary as a framework did were located at academic medical dental care, influences a child’s for reconstructive surgery as well centers in large urban areas.‍ Similar ability to obtain timely and adequate as to correct debilitating occlusal circumstances occur in other states as orthodontic treatment, which is abnormalities.‍ Without appropriate well.‍ Nationwide, 37% of all children,​ an essential component of the orthodontic care, reconstructive 26 reconstructive process and required and midface advancement (ie, jaw) ‍ but 50% of children with CL/P, are precursor to surgery for children surgeries may be compromised, insured through Medicaid (E.‍ Wallace, with CL/P.‍ In this way, access to and outcomes can potentially be PhD, personal communication, 2016).‍ dental and orthodontic care is critical jeopardized.‍ The end result may be This discrepancy results in a potential to promoting optimal outcomes in unstable and/or malpositioned oral mismatch between the percentage of children with CL/P.‍ structures; premature tooth loss; orthodontists accepting Medicaid and functional deficiencies in chewing, the percentage of Medicaid-insured

Throughout childhood and swallowing, airway, and speech;25 children with CL/P who require adolescence, dental and orthodontic and poor esthetic results.‍ The orthodontic treatment as part of Downloaded from www.aappublications.org/news by guest on October 2, 2021 PEDIATRICS Volume 139, number 5, May 2017 e7 (although not all) parents know need support to adjust to having in advance that their newborn an infant who may have a facial infant will have a CL.‍ Because of difference, who will need more technologic limitations in antenatal surgery than the typical child, and diagnosis of a CP, prenatal diagnosis who may have special feeding and

is usually limited to CL ± A and 27 other needs.‍ Parents often grieve unknown posterior palate status.‍ the “loss”‍ of the perfect infant.‍ Anger Once there has been a prenatal and guilt (eg, a mother worries diagnosis of a CL ± P, there may be that she did something during the any number of options for further pregnancy to cause the cleft), as maternal–fetal medicine and/or well as fear for the child’s future

genetic consultation, depending on social acceptance,16 are common local practice and resources.‍ Such reactions.‍ Consultation with a referrals are usually facilitated by craniofacial specialist, if possible, and the woman’s obstetrician or family provision of psychosocial support physician.‍ Prenatal consultation with can be beneficial during the birth a cleft/craniofacial team, which is hospitalizationPhysical Examination.‍ different from genetic counseling, is increasingly common and often FIGURE 7 involves parents meeting various As with any newborn infant, the Children with CP ± CL are at risk for midface hypoplasia, which produces a class III skeletal members of the cleft/craniofacial initial physical examination is malocclusion in which the lower teeth are team and learning about the care of intended to confirm that the infant forward from the upper teeth. childrenBefore/During born thewith Birth CLP Hospitalization.‍ is healthy and has no additional findings on physical examination which would suggest the need for Most infants born with CL ± P do not specialty referral (such as genetics their cleft care.‍ It serves to highlight have an underlying syndrome and do consultation) or imaging studies.‍ concerns regarding differential access well in the newborn period as long Infants born with CP typically are not to orthodontic care and the risk of as they have access to appropriate identified until after birth.‍ Infants disparities in cleft-related outcomes.‍ feeding equipment and support.‍ are sometimes discharged from Likewise, dental implants and other When pediatricians are aware that the hospital with an undiagnosed prosthodontic treatment needed for parents are expecting an infant with CP only to return to the primary some patients with CL/P are costly a CL ± P, they can advise parents care provider’s office with feeding28 and may not be readily available on which hospitals have more difficulties and poor weight gain.‍ exceptCleft/craniofacial to those with teams financial play means .‍ experience and resources available to A recent report from the United an important role in advocating support feeding in infants with CL/P.‍ Kingdom described that 16% of cases for children with CL/P who are Local or regional cleft/craniofacial of CP were undetected29 on the first Medicaid insured, or whose families team staff are usually available Theexamination.‍ American Academy of cannot afford out-of-pocket by telephone to assist primary Pediatrics recommends that every payments, so that these children care pediatricians in identifying effort be made to visualize the can obtain timely, appropriate, appropriate resources.‍ Infants born palate during the initial newborn and equitable cleft-related at term with CL ± P as their only examination in the birth hospital to reconstructive surgery and dental, prenatally identified anomaly do not exclude the presence of a CP. orthodontic, and prosthodontic have a higher rate of birth-related care. problems or complications, and they do not typically need delivery in a Furthermore, identification of Role of the Primary Care high-risk obstetric unit or special cleft-related conditions is an Pediatrician in Caring for accommodations in the delivery important component of the Children Born With CL/P room.‍ Most of these infants are able initial physical examination of toPsychosocial room in with Needs their mothers.‍ a newborn infant with CL/P.‍ An Prenatal important example is the Pierre Robin sequence, which includes Regardless of whether the diagnosis microretrognathia (small, recessed With widespread availability of of the CL/P was made prenatally, jaw), glossoptosis (posteriorly prenatal ultrasonography, many parents and other family members displaced tongue), breathing Downloaded from www.aappublications.org/news by guest on October 2, 2021 e8 FROM THE AMERICAN ACADEMY OF PEDIATRICS 16 difficulties attributable to airway normal weight gain.‍ A mother specialist or cleft/craniofacial center compromise from the posteriorly who wants to provide her milk to for consultation, expedited team visit, positioned tongue (loud snoring, her infant with CL/P should be seen orThe inpatient American transfer Academy may ofbe needed.‍ snorting, and/or desaturation), by a certified lactation consultant Pediatrics recommends that and a U-shaped cleft palate (Fig 5).‍ for evaluation, feeding support, persistent feeding problems in the Infants with Pierre Robin sequence and assistance with procuring and newborn period in infants born frequently require nutritional using a breast pump.‍ Pumping and with CL/P prompt consultation support, prone positioning, or feeding expressed milk provides the with or transfer of care to a cleft/ more invasive treatment of upper benefits of human milk, including craniofacial specialist. airway obstruction.‍ Infants with protection against ear infections, for Hearing suspected Pierre Robin sequence which infants with CP ± CL are at should be evaluated by a craniofacial higher risk.‍ However, there are other specialist, ideally during the birth benefits of breastfeeding that parents Similar to all neonates, infants born hospitalization or very shortly look forward to, and grieving the with CL/P should have newborn thereafter.‍ Although some neonates loss of exclusive breastfeeding is not hearing screening before discharge; with Pierre Robin sequence have uncommon among parents who have however, newborn infants with immediate airway problems, other an infant with a CP ± CL.‍ CP ± CL sometimes do not pass the newborn infants with Pierre Robin The situation is different for infants hearing screen because they already sequence may look deceptively well born with CL or CL ± A.‍ Infants born have middle ear effusion present at in the first week of life and then with CL ± A and no CP may be able birth.‍ Regular audiologic evaluations proceed to develop serious airway, to form an adequate seal to generate and otolaryngology assessments are feeding, and weight gain problems a adequate intraoral negative pressure aPostdischarge part of cleft/craniofacial team care.‍ short time later.‍ It is important that to suck and transfer milk effectively.‍ the pediatrician anticipate these Infants with CL ± A can often potential problems and ensure that successfully breastfeed.‍ A certified After discharge from the birth infants with Pierre Robin sequence lactation consultant can help mother are seen by a craniofacial specialist as hospital, newborn infants with CL/P Early assessment and regular and infant with position and latch to should have an early primary care soon after birth as possible.‍ Althoughoptimize breastfeeding not specific to.‍ infants monitoring by craniofacial experts with CL/P, many mothers desire evaluation to assess weight, jaundice, in partnership with the primary to breastfeed and will therefore feeding, newborn health, and care pediatrician are needed to benefit from the involvement of a maternal/family well-being.‍ A child ensure the health and safety of certified lactation consultant. In born with CL/P should be seen by a infants and young children with general, infants with a cleft palate multidisciplinary cleft/craniofacial Pierre Robin sequence. either as cleft lip with cleft palate team, ideally within 1 week of birth orThe discharge American from Academy the birth of Pediatricshospital.‍ Feeding or cleft palate alone (CP ± CL) need recommends that newborn infants a special feeding device and the with CL/P be seen for early newborn support of a feeding therapist, follow-up by their primary care certified lactation consultant, and/ In general, infants who have a CP ± pediatrician and evaluated by a 30 or nurse experienced in feeding CL need a special feeding device cleft/craniofacial specialist or team children with CP. Infants with (Fig 6) because they cannot generate as soon as possible after discharge CL ± A can often breastfeed with adequate negative intraoral pressure from the birth hospitalization, 31 attention to position and latch. to suck or transfer milk effectively.‍ ideally within 1 week of discharge. These infants need support from a feeding therapist or other health It is unusual for infants with CL/P to Considerations During the First care provider experienced in feeding demonstrate evidence of dysphagia Year infants with CP ± CL.‍ In many (eg, coughing, choking, difficulty community hospitals, the certified swallowing, desaturation with oral Growth and Development lactation consultant is the person with feedings), and such signs should the most experience helping mothers prompt additional evaluation to feed infants with CL/P and the for another cause of the feeding As with every infant, the first individual most familiar with feeding problems.‍ Furthermore, if an infant’s year of life for a child born with devices used with infants with CL/P.‍ feeding problems persist beyond 3 CL/P means frequent visits to the It is rare that infants with CP ± CL days during the birth hospitalization, pediatrician for well- and sick-child can breastfeed sufficiently to support contacting the nearest craniofacial visits.‍ Developmental delay or Downloaded from www.aappublications.org/news by guest on October 2, 2021 PEDIATRICS Volume 139, number 5, May 2017 e9 findings suggestive of an underlying and CP repair at approximately 7 drink optimally fluoridated water, syndrome may manifest during the months of age.‍ Earlier palatoplasty where available, and receive at first year of life or later, prompting is not recommended because it has least twice-yearly fluoride varnish the need for referral to early been associated31 with later midface applications beginning35 with the first intervention services and/or further Hearinghypoplasia.‍ and Otitis Media With toothThe American eruption.‍ Academy of genetic evaluation.‍ Infants born with Effusion Pediatrics recommends that all CL/P should have similar weight children be seen by a dentist by 1 year of age. Early initiation gain and growth compared30 with of dental care is particularly infants born without CL/P.‍ If this It is estimated that more than 90% important for children with CL/P scenario is not the case, the infant of children with CP ± CL develop because oral health influences may need closer attention from the otitis media with effusion at least craniofacial treatment and primary care pediatrician and the once before 1 year of age.‍ Because outcomes. cleft/craniofacial team.‍ Craniofacial of the high prevalence of Eustachian surgeons are particularly attentive to tube dysfunction among children Infants and children, and weight gain in infants with CL/P and born with CP, many cleft/craniofacial especially those with CL/P, should may postpone surgery if an infant is centers will place tympanostomy have their teeth brushed twice notTiming adequately and Goals nourished of Cleft .‍Lip and tubes, often at the same time as daily using fluoride toothpaste Palate Repair palatoplasty, if middle ear fluid is and, where available, drink present.‍ Eustachian tube dysfunction optimally fluoridated water. It is also contributes to more frequent recommended that children at high For children born with CL ± P, the acute otitis media and mild to risk for dental caries, including primary CL repair (cheiloplasty) moderate conductive hearing loss children with CL/P, receive at usually occurs between 2 and 6 among children with CP ± CL.‍ A least twice-yearly fluoride varnish months of age.‍ However, it is not 2014 systematic review identified applications beginning with the unusual to delay cheiloplasty in that children with CP ± CL and otitis first tooth eruption. children with other more pressing media with effusion who receive medical issues, such as needing tympanostomy tubes have better Considerations in Childhood surgery for congenital heart disease.‍ long-term 32speech and language For a child born with a wide CL, the outcomes.‍Children with CP need regular Well-Being cleft surgeon may recommend taping audiologic evaluation and or nasoalveolar molding or other otolaryngology assessment as part procedures to physically bring the of cleft/craniofacial team care. cleft edges closer together before In much the same way that other Oral Health and Dental Care cheiloplasty.‍ The goals of the primary children do, children with CL/P need cheiloplasty are to reconstruct the attention paid by their primary care muscles of the oral sphincter, add pediatrician to nutrition, growth, symmetry to and lengthen the upper Pediatricians play an important role development, school performance lip, and improve symmetry and in promoting oral health through and learning, family dynamics, sleep function of the nasal airway.‍ provision of anticipatory guidance, hygiene, psychosocial function, and dental referral, and fluoride varnish speech, hearing, and oral health.‍ Repair of the CP or palatoplasty application.‍ The American Academy Some children with CL/P have closes the connection between of Pediatrics recommends that all developmental delay or learning the nasal and oral cavities and children, regardless of whether they problems, struggle with being reconstructs the palatal musculature have CL/P,33 visit a dentist by 1 year “different,​”‍ or experience bullying, to enable normal speech of age.‍ Furthermore, the American all areas to which pediatricians bring development.‍ Because palatoplasty Academy of Pediatrics recommends important insight and expertise.‍ is important for development of that children begin having their teeth normal speech in children who cleaned twice daily using a rice grain Children born with CL/P often have CP ± CL, the age at which this size amount of fluoride toothpaste34 undergo multiple reconstructive surgery is performed is an important at the first tooth eruption.‍ At 3 surgeries during childhood (Tables 3 consideration.‍ For infants with CP ± years of age, the amount of fluoride and 4).‍ The time period surrounding CL, primary palate repair typically toothpaste should be increased to surgeries can be frightening and occurs between approximately 9 a pea-sized amount.‍ In addition to stressful for both children and and 18 months of age, although using fluoride toothpaste, children their families, necessitating special some teams perform a combined CL (including those with CL/P) should support (eg, involvement of child Downloaded from www.aappublications.org/news by guest on October 2, 2021 e10 FROM THE AMERICAN ACADEMY OF PEDIATRICS life specialists, tour and orientation should therefore be evaluated may not adequately address the to the operating and recovery regularly by a speech and language class III malocclusion, and children rooms) and planning (eg, time off pathologist with expertise in with midface hypoplasia could need from school and work, care of other detecting and evaluating VPI and midface advancement after skeletal The American Academy of siblings).‍ other speech issues common growthPsychosocial is completed Considerations.‍ Pediatrics recommends that in children with a CP.‍ On cleft/ children with CL/P and their craniofacial teams, these evaluations families be offered psychosocial generally begin before the palate is As children enter adolescence, they support and involvement of repaired to educate parents about may rebel against time-consuming specialists such as child life VPI.‍ Cleft/craniofacial teams should visits to the cleft/craniofacial team professionals, particularly around or surgeries that interfere with times of surgery. advocate for access to high-quality, community-based speech therapy other activities.‍ It is important that children be allowed to gradually Speech when it is not available directly throughThe American the cleft/craniofacial Academy of team.‍ assume a larger role in shared Pediatrics recommends that decision-making regarding cleft- children with CP ± CL undergo related care.‍ Adolescence is also a Between 10% and 25% of children regular speech assessment by a good time for patients to learn more with CP ± CL will have a persistent speech and language specialist about the genetics of CL/P and, cleft-related speech difficulty called with expertise in detecting and specifically, more about their own velopharyngeal insufficiency37 (VPI) evaluating VPI. Primary care chance of having children with CL/P; after their palate repair.‍ The pediatricians should be aware genetic counseling can be beneficial incidence may vary depending on that VPI may require surgical inThe facilitating Importance this of process Preventive.‍ Health surgical technique and timing of management, in which case it will Maintenance palatoplasty.‍ VPI occurs when the not improve with speech therapy soft palate does not adequately alone. close against the posterior Adolescence is also a time of testing pharyngeal wall to effectively rules and of seeking independence, prevent nasal air escape when Considerations in Adolescence which may mean straying from talking.‍ In English, the consonants ŋ healthy habits such as regular /m/ as in “mint,​”‍ /n/ as in “nut,​”‍ Treatment Goals toothbrushing and flossing and and / / as in “walking”‍ are the initiating unhealthy behaviors such only sounds that should be nasal.‍ as smoking and eating junk food.‍ Complete closure of the soft palate During adolescence, the goals of Unfortunately, these bad habits to the posterior pharyngeal wall cleft-related surgical and orthodontic coincide with a risk for worsening is necessary to make pressure dental caries and the onset of care include improving the child’s consonant sounds, which are those gingivitis and periodontal disease occlusion and tooth positioning, nasal that require pressure buildup in that begins with hormonal changes airway patency, and facial skeletal the mouth (ie, /b/ as in “boy,”‍​ /d/ in the preteen and teenage years.‍ relationships.‍ Almost all children as in “daddy,”‍​ /s/ as in “snake”‍).‍ Implications for children with CL/P with CL/P require orthodontic When VPI occurs, there is nasal air are considerable because poor oral treatment to ensure a functional escape when making these pressure health may affect a patient’s candidacy occlusion and long-term oral health sounds, leading the child’s speech for orthodontics, or a teenager’s to sound weak, hypernasal, or and hygiene.‍ Children with CL/P oral health may significantly worsen muffled.‍ are at risk for a deviated nasal during orthodontic treatment if oral septum.‍ A septorhinoplasty is usually hygiene is not fastidiously maintained, Because VPI is a structural problem, performed during the teenage years.‍ and this behavior, in turn, may affect it generally requires surgical Midface hypoplasia, a relatively future oral health and cleft-related management to correct.‍ Children common finding in children with outcomes.‍ Likewise, obesity, which is with CP ± CL are also at risk for CP ± CL, produces a discrepancy in increasingly common in children and difficulty learning how to correctly positioning of the upper and lower teenagers, may worsen obstructive use their palate.‍ This functional jaw, with the mandible being forward sleep apnea of anatomic etiology, difference is not the same as VPI; from the maxilla, referred to as a leading to adverse health and school thus, considering the differential class III skeletal malocclusion (ie, performance issues.‍ Incorporating diagnosis is imperative to effective involving the jaws, not just the teeth) motivational interviewing into visits treatment.‍ Children with CP ± CL (Fig 7).‍ Orthodontic treatment alone with the cleft/craniofacial team and Downloaded from www.aappublications.org/news by guest on October 2, 2021 PEDIATRICS Volume 139, number 5, May 2017 e11 Transitioning the care of a patient Authors with CL/P to adult care requires Charlotte W. Lewis, MD, MPH, FAAP primary pediatric care physician may individualized planning and Lisa S. Jacob, DDS, MS be helpful in promoting healthier referrals. When transitioning, Christoph U. Lehmann, MD, FAAP, FACMI choices and lifestyles.‍ patients need a detailed summary Transitioning to Adult Care of their cleft/craniofacial team care Section on Oral Health Executive and surgery, as well as information Committee, 2015–2016 about their other special needs. David Krol, MD, MPH, FAAP, Chairperson Rani Gereige, MD, FAAP For children with CL/P, transitioning Jeffrey Karp, DDS from pediatric to adult care can be as List of Resources and Reliable Susan Fisher-Owens, MD, MPH, FAAP challenging as it is for other children Web Sites Patricia Braun, MD, MPH, FAAP with special health care needs.‍ In some Lisa S. Jacob, DDS, MS cases, it may be even more challenging Adriana Segura, DDS, MS, Immediate Past for patients with CL/P because they 1.‍ Centers for Disease Control and Chairperson may “age out”‍ of their pediatric cleft/ Prevention: Birth Defects— craniofacial team or children’s hospital Facts about Cleft Lip and Palate.‍ Liaisons before their cleft-related care is Available at: http://​www.‍cdc .‍gov/ ​ Amr Moursi, DDS, PhD – American Academy of completed, leading to disruptions in ncbddd/​birthdefects/cleftlip​ .‍html Pediatric Dentistry care.‍ Aging out is more likely for male Anne Clancy, RDH, MS – American Dental subjects, who reach skeletal maturity 2.‍ Cleft Palate Foundation (an Association Liaison excellent source of information at an older age (possibly into their Staff third decade) than female subjects.‍ for families).‍ Available at: http://​ Lauren Barone, MPH Furthermore, patients with CL/P may www.‍cleftline .‍org/ ​ have ongoing cleft-related special 3.‍ Seattle Children’s Hospital: Cleft needs that continue into adulthood.‍ Lip and Palate.‍ Available at: http://​ Outside of the pediatric age span, www.‍s eattlechildrens.‍o rg/me​ dical-​ various subspecialty medical/surgical/ conditions/​chromosomal-genetic-​ ​ dental and allied health providers conditions/​cleft-​lip-​palate/​ Abbreviations represented on cleft/craniofacial teams 4.‍ American Speech-Language- must now be accessed separately Hearing Association—Cleft Lip (eg, audiology, plastic surgery, and Palate.‍ Available at: http://​ ACPA: American Cleft Palate– otolaryngology, orthodontics), without www.‍asha .‍org/ ​public/​speech/​ Craniofacial Association the benefit of ongoing cleft/craniofacial disorders/CleftLip/​ ​ CL: cleft lip team care coordination and expertise.‍ CL/P: cleft lip and/or cleft palate Dental, orthodontic, and prosthodontic 5.‍ Parameters for Evaluation and CLP: cleft lip and cleft palate care may be more difficult for young Treatment of Patients with Cleft CP: cleft palate alone adults to access because of limitations Lip/Palate or Other Craniofacial CL ± A: cleft lip with or without in community dentists’ expertise, Anomalies.‍ American Cleft Palate- cleft alveolus affordability, and/or insurance Craniofacial Association.‍ Revised CP ± CL: cleft lip with cleft palate coverage.‍ Primary care pediatricians Edition.‍ November 2009.‍ Available or cleft palate alone can help patients and families at: http://​www.‍acpa- ​cpf.‍org/ ​ ECC: early childhood caries anticipate and plan for the transition to uploads/​site/​Parameters_Rev_​ ​ VPI: velopharyngeal insufficiency adult care.‍ 2009.‍pdf

Address correspondence to Charlotte W. Lewis, MD, MPH. E-mail: [email protected]

PEDIATRICS (ISSN Numbers: Print, 0031-4005; Online, 1098-4275).

Copyright © 2017 by the American Academy of Pediatrics

FINANCIAL DISCLOSURE: The authors have indicated they have no financial relationships relevant to this article to disclose.

FUNDING: No external funding.

POTENTIAL CONFLICT OF INTEREST: The authors have indicated they have no potential conflicts of interest to disclose.

FROM THE AMERICAN ACADEMY OF PEDIATRICS

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Updated Information & including high resolution figures, can be found at: Services http://pediatrics.aappublications.org/content/139/5/e20170628 References This article cites 32 articles, 7 of which you can access for free at: http://pediatrics.aappublications.org/content/139/5/e20170628#BIBL Subspecialty Collections This article, along with others on similar topics, appears in the following collection(s): Current Policy http://www.aappublications.org/cgi/collection/current_policy Dentistry/Oral Health http://www.aappublications.org/cgi/collection/dentistry:oral_health_s ub Section on Oral Health http://www.aappublications.org/cgi/collection/section_on_pediatric_ dentistry_and_oral_heath Surgery http://www.aappublications.org/cgi/collection/surgery_sub Permissions & Licensing Information about reproducing this article in parts (figures, tables) or in its entirety can be found online at: http://www.aappublications.org/site/misc/Permissions.xhtml Reprints Information about ordering reprints can be found online: http://www.aappublications.org/site/misc/reprints.xhtml

Downloaded from www.aappublications.org/news by guest on October 2, 2021 The Primary Care Pediatrician and the Care of Children With Cleft Lip and/or Cleft Palate Charlotte W. Lewis, Lisa S. Jacob, Christoph U. Lehmann and SECTION ON ORAL HEALTH Pediatrics 2017;139; DOI: 10.1542/peds.2017-0628 originally published online April 24, 2017;

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Pediatrics is the official journal of the American Academy of Pediatrics. A monthly publication, it has been published continuously since 1948. Pediatrics is owned, published, and trademarked by the American Academy of Pediatrics, 345 Park Avenue, Itasca, Illinois, 60143. Copyright © 2017 by the American Academy of Pediatrics. All rights reserved. Print ISSN: 1073-0397.

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