CLINICAL REPORT Guidance for the Clinician in Rendering Pediatric Care

Diagnosis, Management, and Treatment of Female Genital Mutilation or Cutting in Girls Janine Young, MD, FAAP,a Nawal M. Nour, MD, MPH, FACOG,b Robert C. Macauley, MD, FAAP,c Sandeep K. Narang, MD, JD, FAAP,d Crista Johnson-Agbakwu, MD, MSc, FACOG,e SECTION ON GLOBAL HEALTH, COMMITTEE ON MEDICAL LIABILITY AND RISK MANAGEMENT, COMMITTEE ON BIOETHICS

Female genital mutilation or cutting (FGM/C) involves medically unnecessary abstract cutting of parts or all of the external female genitalia. It is outlawed in the United States and much of the world but is still known to occur in more than 30 countries. FGM/C most often is performed on children, from infancy to fi aDepartment of General Pediatrics, Denver Health Refugee Clinic, and adolescence, and has signi cant morbidity and mortality. In 2018, an Human Rights Clinic, Denver Health and Hospitals and School of estimated 200 million girls and women alive at that time had undergone FGM/ Medicine, University of Colorado Denver, Denver, Colorado; bAfrican C worldwide. Some estimate that more than 500 000 girls and women in the Women’s Health Center, Department of Obstetrics and Gynecology, Brigham and Women’s Hospital and Harvard Medical School, Harvard United States have had or are at risk for having FGM/C. However, pediatric University, Boston, Massachusetts; cDepartment of Pediatrics, Oregon prevalence of FGM/C is only estimated given that most pediatric cases remain Health and Science University, Portland, Oregon; dDivision of Child Abuse Pediatrics, Ann and Robert H. Lurie Children’s Hospital of undiagnosed both in countries of origin and in the Western world, including in Chicago and Department of Pediatrics, Feinberg School of Medicine, the United States. It is a cultural practice not directly tied to any specific Northwestern University, Chicago, Illinois; and eRefugee Women’s Health Clinic, Department of Obstetrics and Gynecology, Valleywise religion, ethnicity, or race and has occurred in the United States. Although it is Health Medical Center and Office of Refugee Health, Southwest mostly a pediatric practice, currently there is no standard FGM/C teaching Interdisciplinary Research Center, School of Social Work, Watts College of Public Service and Community Solutions, Arizona State University, required for health care providers who care for children, including Phoenix, Arizona pediatricians, family physicians, child abuse pediatricians, pediatric fi Clinical reports from the American Academy of Pediatrics benefit from urologists, and pediatric urogynecologists. This clinical report is the rst expertise and resources of liaisons and internal (AAP) and external comprehensive summary of FGM/C in children and includes education reviewers. However, clinical reports from the American Academy of Pediatrics may not reflect the views of the liaisons or the regarding a standard-of-care approach for examination of external female organizations or government agencies that they represent. genitalia at all health supervision examinations, diagnosis, complications, The guidance in this report does not indicate an exclusive course of management, treatment, culturally sensitive discussion and counseling treatment or serve as a standard of medical care. Variations, taking into account individual circumstances, may be appropriate. approaches, and legal and ethical considerations. 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.

To cite: Young J, Nour NM, Macauley RC, et al. AAP SECTION ON GLOBAL HEALTH, AAP COMMITTEE ON MEDICAL LIABILITY AND RISK MANAGEMENT, AAP COMMITTEE ON BIOETHICS. Diagnosis, Management, and Treatment of Female Genital Mutilation or Cutting in Girls. Pediatrics. 2020;146(2): e20201012

Downloaded from www.aappublications.org/news by guest on October 2, 2021 PEDIATRICS Volume 146, number 2, August 2020:e20201012 FROM THE AMERICAN ACADEMY OF PEDIATRICS 1 BACKGROUND a traditional rite of passage, and/or risk for having FGM/C performed, but Female genital mutilation or cutting upholds prescribed religious beliefs these estimates are projections based (FGM/C)* is currently outlawed in (although no sacred texts recommend on country of origin prevalence data this practice).6,7 FGM/C is and may, therefore, not be precise or much of the world. The United 13 Nations,1 the World Health predominantly performed on children accurate. To date, no reliable data Organization (WHO),2 the and adolescents ranging in age from exist quantifying the true number of International Federation of Obstetrics newborn infants to 15 years; the girls and women residing in the 3 typical age varies by region of the United States who have had FGM/C and Gynecology, and the American 13 Medical Association4 are among world, country, state, province, and performed. even town or village8 (see Fig 2). multiple organizations that The majority of FGM/C occurs in 30 However, the vast majority of unequivocally oppose all forms of African and Middle Eastern countries, medical literature, teaching, and FGM/C (see Table 1). with highest prevalence in Egypt, research is focused on chronic Somalia, Guinea, Djibouti, Mali, Sierra FGM/C involves medically issues affecting women of Leone, Sudan, and Eritrea.14 However, unnecessary cutting of parts or all of childbearing age and on the FGM/C also occurs with unknown the external female genitalia, management of FGM/C during frequency in Yemen, Oman, the including the clitoris, prepuce, labia pregnancy and the peripartum and United Arab Emirates, Bahrain, minora, and labia majora. FGM/C may postpartum periods.9,10 be associated with significant northern Iraq, India, Malaysia, and To date, there are neither national Indonesia15 and has been reported to morbidity and mortality and is not 16,17 associated with any medical benefit. nor international clinical practice occur sporadically in Russia and fi 18 Notwithstanding this morbidity, it is guidelines that are speci cally Colombia. The practice of FGM/C is still performed and has been focused on FGM/C in infants and not uniformly performed throughout practiced in many cultures for prepubertal and pubertal girls. any given country and may be clustered on the basis of economic thousands of years, predating This clinical report’s primary goal is 5 status, level of education, rural versus Judaism, Christianity, and Islam. to educate pediatric health care urban geographic location, ethnic Historically and in present-day, FGM/C providers on the continued and/or tribal affiliation, and religious is a cultural practice not directly tied occurrence of FGM/C, the populations beliefs. In half of the countries with to any specific religion, ethnicity, or that it affects, diagnosis, available data on FGM/C prevalence, race and has been reported to still complications, treatment most girls have had FGM/C occur throughout the world, including options, and the provision of performed before 5 years of age in the United States, but with higher culturally sensitive counseling, (see Fig 2). prevalence in parts of the Middle all while taking into consideration East, Asia, and Africa (see Fig 1). the legal and ethical aspects of Although it is illegal in the United Reasons why FGM/C is performed a practice that is illegal in the States, FGM/C has been reported in vary by region and culture and may United States and much of the world the United States in sporadic cases include a belief that it increases (see Table 2). over the past several years.19,20 The marriageability, preserves virginity, federal Department of Justice improves hygiene, perpetuates prosecuted its first case against a US PREVALENCE physician accused of having * Currently, there are few experts in the United National and international data on the performed FGM/C across state lines States who care for children and teenagers with prevalence of FGM/C in children and in up to 100 children (see The Law FGM/C (see Table 4 for a link to access regional fi specialists). As such, it is of utmost importance to adolescents are dif cult to obtain and and FGM/C in Minors in the United identify regional specialists, including child abuse are based on either maternal report States for further current case pediatricians, gynecologists, urologists, and or estimates derived from data on the details).21 At of time of writing, the mental health providers, with whom to collaborate adult female population who present charges were dismissed by the if providing medical care for children and mainly for obstetrical care. The district judge of the Eastern District teenagers affected by or at risk for FGM/C. FGM/C ’ 22 fi is an accepted term adopted by many United Nations Children s Fund of Michigan. This speci c case is international organizations and in medical estimated that in 2018, 200 million focused on the practice of FGM/C in research papers and, as such, will be used girls and women alive at that time the Dawoodi Bohra community in throughout this document.9,12,16 Infibulation refers had undergone FGM/C worldwide.11 India and among a subset of the to type III FGM/C (see FGM/C Types and Some authors estimate that more Dawoodi Bohra immigrant Classification in addition to Fig 4). Defibulation refers to a surgical procedure that opens the scar than 500 000 girls and women who community in the United States. The formed in patients with type III FGM/C (see live in the United States (as of 2012) illegal practice of US families sending Defibulation). have had FGM/C performed or are at their children abroad to have FGM/C

Downloaded from www.aappublications.org/news by guest on October 2, 2021 2 FROM THE AMERICAN ACADEMY OF PEDIATRICS TABLE 1 FGM/C Recommendations Recommendations FGM/C is illegal in the United States. FGM/C is a violation of human rights. FGM/C has no medical benefit. FGM/C is associated with serious and potentially life-threatening complications that can have lifelong impacts on health. Health care providers should not perform any type of FGM/C on female infants, girls, or teenagers. Health care providers caring for girls at risk for FGM/C should actively counsel families against performing FGM/C, including when families travel to countries where FGM/C is practiced. A genital examination allows health care professionals to identify FGM/C and other medical findings of significance. If genital examination findings are equivocal for the presence of FGM/C and risk factors for FGM/C are present, a specialist trained in identification of FGM/C should be consulted (see Table 4). The management of FGM/C should include complete documentation of clinical findings and the use of ICD-10 coding. Health care providers should recommend defibulation for all girls and teenagers with type III FGM/C, irrespective of whether complications are currently present. performed (also known as “vacation FGM/C TYPES AND CLASSIFICATION significant long-term morbidity (see cutting”) is also presumed to The WHO has classified FGM/C into Complications and Management) occur.23,24 However, prevalence data four distinct types (see Table 3), with (Figs 3–11). To better delineate are nonexistent to date.13 type III associated with the most specific findings, the WHO has also included subtypes of FGM/C, categorized as Ia and Ib, IIa–IIc, and IIIa and IIIb (see Fig 12). However, the practice of FGM/C is not standardized, and physical findings may overlap between types and subtypes (see Figs 5 and 6). Type I FGM/C is classified as cutting of the glans or part of the body of the clitoris and/or prepuce; type II includes excision of the clitoris and labia minora, with or without excision of the labia majora; type III, infibulation, includes cutting and apposing the labia minora and/or majora over the urethral meatus and vaginal opening to significantly narrow it and may include clitoral excision (Figs 10 and 11); and type IV includes piercing, scraping, nicking, stretching, or otherwise injuring the external female genitalia without removing any genital tissue and includes practices that do not fall into the other three categories (Fig 13). Prevalence of FGM/C subtypes is mainly influenced by ethnicity and region. Surveys of girls and women FIGURE 1 older than 15 years reveal that FGM/C global prevalence. Countries where FGM/C is practiced with unknown frequency and not approximately 10% of cases are pictured on this map include Oman, the United Arab Emirates, Bahrain, India, Malaysia, Russia, and fi Colombia.15–18 South Sudan seceded from Sudan in 2011 but is not noted on this map.107 Repro- FGM/C type III, or in bulation, duced with permission from United Nations Population Fund. Demographic Perspectives on Female although these numbers are based on Genital Mutilation. Copyright © United Nations Population Fund 2015. self-report and likely under- or

Downloaded from www.aappublications.org/news by guest on October 2, 2021 PEDIATRICS Volume 146, number 2, August 2020 3 note the lack of training in diagnosis, management, and cultural and legal aspects of care in adult women.29–32 One recent US study revealed that of 79 general pediatricians surveyed, 73% had received no previous FGM/C education, 89% did not feel confident in their ability to identify FGM/C types, and frequency of performing external genital examinations on female patients at health supervision visits was inversely related to the age of the patient (with 75% performing examinations on infants, down to only 8% in 17- to 18-year-olds).28 In literature from other high-income countries with immigrant populations from regions where FGM/C is prevalent, pediatricians have reported identifying FGM/C in pediatric patients, managing complications from remote and recent procedures, and, in some instances, being asked to perform FGM/C in children.9,33,34 However, one survey conducted in Australia revealed that of pediatricians surveyed, most reported neither discussing nor examining children for FGM/C.34,35

CLINICAL HISTORY TAKING FIGURE 2 For children with possible risk factors Maternal report of age that girls have undergone FGM/C, by country. Reproduced with permission for FGM/C (eg, mother or sibling with from UNICEF. Female Genital Mutilation/Cutting: A Statistical Overview and Exploration of the Dynamics of Change. New York, NY: UNICEF; 2013:41. Copyright © United Nations Children’s a history of FGM/C, country of origin, Fund 2013. birth country, and/or history of travel to a country where FGM/C is practiced), it is recommended that overestimate the actual prevalence of KNOWLEDGE OF, ATTITUDE ABOUT, AND clinical assessment of FGM/C status type III FGM/C.8 The practice of PRACTICE OF FGM/C IN THE UNITED be integrated into routine pediatric infibulation, the removal and STATES care. Nonetheless, it can be apposition of the labia minora and/or Knowledge of FGM/C is believed to be challenging. It is of utmost labia majora with or without cutting limited among US pediatric providers importance for the pediatric health of the clitoris, is concentrated in because there are no nationally care provider to establish a trusting northeastern Africa in Djibouti, required courses on diagnosis of type, relationship with the child or Eritrea, and Somalia. Data management, or treatment of FGM/C teenager and her family to allow for extrapolated from 2004 to 2008 East for medical students, residents, or nonjudgmental questions and African regional surveys of girls and fellows in general pediatrics, family ongoing counseling. Experts women 15 years and older revealed medicine, adolescent medicine, child suggest that health care providers that 82% to 99% reported to have abuse pediatrics, urology, or ask the patient or parent the term – had undergone FGM/C, and of these gynecology.9,26 28 Instead, existing they use to name female genital cases, 34% to 79% were type III studies from the United States are cutting. Use of the word (Somalia having the highest focused on nurse midwives and mutilation is not recommended when prevalence of type III).25 obstetricians and gynecologists and discussing FGM/C with patients and

Downloaded from www.aappublications.org/news by guest on October 2, 2021 4 FROM THE AMERICAN ACADEMY OF PEDIATRICS TABLE 2 Timeline of International Legislation Against FGM/C may also be very limited. Country Year Legislation Enacteda Understanding each girl’s and ’ Benin 2003 mother s current knowledge and Burkina Faso 1996 perception of FGM/C, addressing Central African Republic 1966, 1996b fears, providing age-appropriate Chad 2003 education about pelvic anatomy, and ’ Côte d Ivoire 1998 sharing information about the Djibouti 1995, 2009b Egypt 2008 importance of the annual physical Eritrea 2007 examination can facilitate ongoing Ethiopia 2004 rapport and engagement with health The Gambia 2015108 care. In addition, some girls or b Ghana 1994, 2007 parents may request a female health Guinea 1965, 2000b Guinea-Bissau 2011 care provider as well as a female Iraq (Kurdistan region) 2011 interpreter. For girls at risk for FGM/ Kenya 2001, 2011b C, it is advisable that efforts be made Mauritania 2005 to honor this request, if at all possible, Niger 2003 given social and cultural expectations. Nigeria (some states) 1999–2006 Senegal 1999 It is important for health care Somalia 2012 providers to assess each patient Sudan (some states) 2008–2009 Togo 1998 individually and make no Uganda 2010 assumptions about her and her United Republic of Tanzania 1998 parents’ beliefs regarding FGM/C. Yemen 2001 Mothers and fathers may or may not Reproduced with permission from United Nations Children’s Fund. Female Genital Mutilation/Cutting: A Statistical Over- hold discordant views about FGM/C, view and Exploration of the Dynamics of Change. New York, NY: United Nations Children’s Fund; 2013:9. Copyright © and some clinical experts suggest that UNICEF 2013. a Bans outlawing FGM/C were passed in some African countries, including Kenya and Sudan, during colonial rule. This mothers who have themselves table includes only legislation that was adopted by independent African nations and does not reflect earlier rulings. undergone FGM/C may nonetheless b Later dates reflect amendments to the original law or new laws. oppose subjecting their daughters to this practice. Instead, treating patients and caregivers with respect, caregivers because it is potentially may initially withhold information sensitivity, and professionalism will fl fi in ammatory and also dif cult to about previous FGM/C. encourage them to return and translate (and may not be supports health-seeking behavior. understood). When caring for girls with or at risk for FGM/C, it is important to In families with risk factors for FGM/C, Given that girls who had FGM/C approach FGM/C discussion, physical including having a mother and/or performed at a young age may not examination, and counseling with other girls who have already been cut recall being cut (as well as the fact cultural sensitivity. Girls’ genitalia in the family, it is advisable to inquire, that parents or primary guardians may have never been examined in a nonthreatening manner, whether may not reveal a history of FGM/C to before, although they may have had the parents are planning to perform their children), obtaining a history of multiple physical examinations in the FGM/C on their daughter. Raising FGM/C from the girl alone may yield United States or abroad.28 Girls and such a sensitive topic may elicit little relevant clinical information. mothers who have been cut may be various emotions, but this is a vital Instead, it is advisable that the FGM/C afraid to seek care from a health care educational opportunity to reiterate clinical history taking include both provider because of concerns about child safety, the morbidity and the girl and parent or guardian disapproval or previous negative mortality associated with FGM/C, and once rapport has been established. experiences being used to teach its legal consequences. Such Similarly, some parents or guardians trainees or other health care discussions may occur over multiple may not be aware that FGM/C providers about FGM/C; many will visits, and it is recommended to performed in the country of seek a physician’s care only if there is revisit these discussions, particularly origin before immigration is not a health problem. Irrespective of their if the child is being seen before a trip prosecutable in the United States (see culture, girls’ and mothers’ to countries where FGM/C is still The Law and FGM/C in Minors in the knowledge of female anatomy, practiced. Whether to have this United States) or may fear judgment reproductive health, family planning, discussion in front of the girl depends from US medical providers, so they and sexually transmitted infections on the developmental age of the child,

Downloaded from www.aappublications.org/news by guest on October 2, 2021 PEDIATRICS Volume 146, number 2, August 2020 5 TABLE 3 FGM/C ICD-10 Coding and WHO Classification FGM/C Type ICD-10 Code109 WHO Classification (2016) Female genital mutilation, N90.810 unspecified Female genital mutilation, N90.811 Partial excision of the clitoris and/or prepuce type I — Ia: removal of prepuce only — Ib: partial or totala removal of clitoris and prepuce Female genital mutilation, N90.812 Partial or totala removal of the clitoris and labia minora, with or without excision of the labia majora type II — IIa: removal of labia minora only — IIb: partial removal of the clitoris and labia minora — IIc: partial removal of the clitoris, labia minora and majora Female genital mutilation, N90.813 Infibulation: narrowing of the vaginal orifice by cutting and apposing the labia minora and/or labia majora over type III the vaginal opening; may include excision of the clitoris — IIIa: removal and apposition of the labia minora — IIIb: removal and apposition of the labia majora Other female genital N90.818 Unclassified (all other harmful procedures for non-medical purposes), including piercing mutilation — IV —, not applicable. a Although WHO classification describes total removal of the clitoris, it is the glans or the glans and part of the body of the clitoris that is cut.110

her degree of understanding, and the providers are both aware that EXTERNAL FEMALE GENITAL dynamics within the family. education about FGM/C medical EXAMINATION: STANDARDS AND Encouraging parents to reevaluate complications and illegality has been DOCUMENTATION this practice in a nonjudgmental discussed and aware of what specific Bright Futures: Guidelines for Health manner and impressing on them that issues have and have not been Supervision of Infants, Children, and FGM/C causes medical complications, discussed. Similarly, given that FGM/ Adolescents, Fourth Edition, has no medical indications, and is also C performed overseas and before US recommends that “each visit include against the law (with associated legal emigration does not constitute a complete physical examination.” A consequences) will hopefully a violation of US law, it is of utmost complete physical examination facilitate reconsideration of this importance to document past history includes assessment of genitalia from practice. It is also essential to and timing of FGM/C in the chart so birth to age 21.36 document these discussions in the that it is clear that there are no legal It is recommended that pediatricians medical chart so that health care ramifications for the family. and other health care providers include genital inspection as part of all health supervision examinations and be knowledgeable about the variants of normal genital anatomy and the signs of previous genital cutting.33 The external genital examination in girls should include the identification of the prepuce, clitoris, and labia minora and majora (see Figs 14–16), and the examination should be performed in frog-leg position with chaperone use documented, per FIGURE 3 recommendations of the American Prepubertal female with labial adhesions, Academy of Pediatrics.37 In no FGM/C. (Reprinted with permission from prepubertal girls, it may be more American Academy of Pediatrics. Visual Di- fi agnosis of Child Abuse on CD-ROM. 3rd ed. Elk FIGURE 4 dif cult to identify the clitoris, and in Grove Village, IL: American Academy of Pediat- Periclitoral adhesions, 18-month-old female these cases, the prepuce may need to rics; 2008.) patient, no FGM/C (photo credit: J.Y.). be partially retracted to facilitate

Downloaded from www.aappublications.org/news by guest on October 2, 2021 6 FROM THE AMERICAN ACADEMY OF PEDIATRICS consulted, although currently, there are few such specialists in the United States (see Table 4 for a link to access regional specialists). However, given the subtleties of some FGM/C, it is assumed that not all cases will be identified.

If FGM/C is suspected to have occurred recently, it may also be difficult to confirm on physical examination without prompt evaluation by a specialist. The genitalia are highly vascularized tissues, healing occurs quickly, and less invasive cutting may easily be missed in some cases, given minimal or only subtle scarring.

If FGM/C is identified on examination, FIGURE 5 it is advisable that the clinician Type IIb or IIIa FGM/C in a prepubertal girl (excised clitoris, prepuce, partially excised right labia discuss findings with the caregiver minora, absent left labia minora, and possible partial anterior fusion of excised labia minora covering urethral meatus and proximal vaginal introitus). This photo was reviewed by three FGM/C and/or child if the child is old enough experts (J. Abdulcadir, C.J.A, and J.Y), and consensus was either type IIb or IIIa. Arrows were added to participate in medical decision- by J.Y. (Reprinted with permission from Graham EA. Ritual female genital cutting [RFGC] PowerPoint making. Medical complications, slides. 2014. Available at: https://ethnomed.org/resource/ritual-female-genital-cutting-rfgc-powerpoint- depending on the type of FGM/C slides/. Accessed April 30, 2020.) diagnosed, should be reviewed with the caregiver and/or child, as well as identification. Similarly, the labia physical examination, particularly in when to return for care if any of these minora is less developed, and it is prepubertal girls. Similarly, complications develop (see advisable that efforts be made to prepubertal labial adhesions may be Complications and Management). If identify this structure as well. miscategorized as FGM/C (see Figs an older child or teenager is unaware Although not systematically studied, 3–6). If genital examination findings that she has had FGM/C performed anecdotal experience by some experts are equivocal for the presence of (as may be the case if a girl had FGM/ suggests that types I, II, and IV FGM/C FGM/C and risk factors for FGM/C are C performed at a young age), it is and even some type III subtypes may present, a specialist trained in important that a culturally sensitive be difficult to recognize during the identification of FGM/C should be approach be taken to further discuss her diagnosis with her (see the Appendix for further guidance). Although not systematically studied, FGM/C is a community practice, and in some cultures, aunts, grandparents, or other figures of authority may make the decision to perform FGM/C on a child.38 In these cases, theoretically, a parent may also not know of a child’s previous FGM/C. It is suggested that a thoughtful, supportive discussion occur with the FIGURE 6 Type Ib FGM/C, scarring with excised clitoris and prepuce, or type IV FGM/C with linear scar from primary caregivers to inform them of superficial cutting with adhesions, Tanner stage 5 female patient. This photo was reviewed by three the diagnosis, associated potential FGM/C experts (J. Abdulcadir, C.J.A., and J.Y.), and it was unclear if it was type 1b or type IV on the medical issues, and treatment, when basis of photos. The author of the source of the photo identifies the photo as type IV FGM/C. (Reprinted with permission from Creighton SM, Dear J, de Campos C, Williams L, Hodes D. Multi- clinically indicated. Given that such disciplinary approach to the management of children with female genital mutilation [FGM] or information may be distressing, it is suspected FGM: service description and case series. BMJ Open. 2016;6[2]:e010311.) advised to offer mental health

Downloaded from www.aappublications.org/news by guest on October 2, 2021 PEDIATRICS Volume 146, number 2, August 2020 7 may facilitate timely referral to gynecologic or urologic specialists, if needed. However, a recent review of state-level hospital discharge data in Arizona revealed that from 2008 to 2014, only 243 cases of FGM/C had been documented, as identified by International Classification of Diseases, Ninth Revision and ICD-10 codes, and that of these 243 cases, none were documented in children younger than 18 years (C.J.A, unpublished observations). As context, the Population Reference Bureau estimates that 7459 women and children are at risk for FGM/C in Arizona, suggesting that FGM/C is not being documented consistently by health care providers.40 FIGURE 7 Type IIa FGM/C, excision of labia minora only, Tanner stage 5 female patient. (Reprinted with permission of Jasmine Abdulcadir. Copyright © Jasmine Abdulcadir. Also published in Abdulcadir J, Catania L, COMPLICATIONS AND MANAGEMENT Hindin MJ, Say L, Petignat P, Abdulcadir O. Female genital mutilation: a visual reference and learning tool for health care professionals. Obstet Gynecol. 2016;128[5]:959.) Immediate Health Complications Health care providers who work with professional support to caregivers, as Diseases, 10th Revision (ICD-10) 39 children and live in countries with indicated. coding, as indicated. A guide to intermediate and high prevalence of fi ICD-10 coding and de nitions and FGM/C are likely to see immediate descriptions of FGM/C subtypes is health complications; however, such CODING AND DOCUMENTATION provided in Table 3. In the future, a situation is likely rare in the United The management of FGM/C should appropriate coding will allow for States.41 Exceptions will be newly include complete documentation of better estimates of pediatric FGM/C arrived immigrants who underwent clinical findings and use of the prevalence. Additionally, clinical FGM/C just before entering the International Classification of documentation of FGM/C findings United States, girls who have recently returned to the United States after undergoing FGM/C while temporarily overseas, or FGM/C that has been performed in the United States. In general, medical complications become more severe with progression from type I to type III, tending to reflect the amount of tissue being removed. If the clitoral dorsal artery or labial branches of the pudendal artery are cut, hemorrhage has been documented in the range of 4% to 19%. Active hemorrhage, subsequent hypotension, hypovolemic shock, and death may occur in these cases.42,43 Given the potential use of traditional FIGURE 8 nonsterile instruments, girls with Type IIb FGM/C, partial or total clitoridectomy and excision of labia minora, Tanner stage 5 woman. (Reprinted FGM/C are at risk for acute infections. with permission of Jasmine Abdulcadir. Copyright © Jasmine Abdulcadir. Also published in Abdulcadir J, Catania L, Hindin MJ, Say L, Petignat P, Abdulcadir O. Female genital mutilation: a visual reference and Girls with type III FGM/C most often learning tool for health care professionals. Obstet Gynecol. 2016;128[5]:959.) have their legs bound for up to

Downloaded from www.aappublications.org/news by guest on October 2, 2021 8 FROM THE AMERICAN ACADEMY OF PEDIATRICS need to restrain a girl who was not anesthetized during the procedure42 (Table 5). If a girl is seen with any immediate complications, it is recommended that the health care provider refer for appropriate emergency care and the patient receive vaccination against tetanus. Once stabilized, it is recommended to consult a health provider with FGM/C expertise (see Table 4) to determine the need for medical and/or surgical management. Although there are no data that directly link FGM/C to acquisition of FIGURE 9 HIV, hepatitis B, or hepatitis C, some Type IIc FGM/C, partial or total clitoridectomy, excision of the labia minora and majora, Tanner stage clinical experts recommend testing 5 woman. (Reprinted with permission of Jasmine Abdulcadir. Copyright © Jasmine Abdulcadir. Also for these infections at the initial visit published in Abdulcadir J, Catania L, Hindin MJ, Say L, Petignat P, Abdulcadir O. Female genital and at least 6 months after cutting mutilation: a visual reference and learning tool for health care professionals. Obstet Gynecol. 2016; 44 128[5]:959.) has occurred. As in all children, it is advised that hepatitis B vaccination be offered to girls with FGM/C if they 1 week after cutting (standard have also been reported. Difficulty are neither immune nor infected. practice in type III cases, reportedly urinating, both from pain and to facilitate scar formation). Such deliberate decreased liquid intake, is In cases in which a girl has been prolonged binding facilitates bacterial common.41 The urethra, vagina, and/ recently cut, it is recommended to overgrowth and prevents wound or rectum may also be inadvertently offer mental health supports for her, healing. Girls may suffer from cut during FGM/C. Fractures of the as indicated. Refer to Reporting Child cellulitis or wound abscesses; clavicle, femur, or humerus also have Abuse and Ethical Analysis regarding gangrene, septic shock, and tetanus been reported, resulting from the scenarios in which child abuse reports are recommended.

Long-Term Complications Studies reveal that girls and women with type III FGM/C are also at higher risk of long-term health complications than those with type I, II, or IV FGM/ C. A systematic review of the literature reveals that long-term health complications include dysmenorrhea as well as psychosexual, infertility, and urinary problems.42 However, physical and psychological complications are not necessarily proportionate to the FGM/C type. Although the authors of one study state that the relative risk of obstetric complications (including increased cesarean delivery rates), of the need for infant resuscitation, of FIGURE 10 stillbirths, and of infants with low Type IIIb FGM/C, with significant narrowing of the introitus from stitching of the labia minora, Tanner birth weight increases with the stage 5 woman. (Reprinted with permission of Jasmine Abdulcadir. Copyright © Jasmine Abdulcadir. Also published in Abdulcadir J, Catania L, Hindin MJ, Say L, Petignat P, Abdulcadir O. Female genital severity of FGM/C, data are limited, mutilation: a visual reference and learning tool for health care professionals. Obstet Gynecol. 2016; and it is likely that the combination of 128[5]:961.) obstructed labor and substandard

Downloaded from www.aappublications.org/news by guest on October 2, 2021 PEDIATRICS Volume 146, number 2, August 2020 9 Urinary Issues The narrow neo-introitus and scar in type III FGM/C create a dark, moist, and unventilated area surrounding the urethra. Urine can stagnate beneath the scar and promote abnormal bacterial growth. As a result, girls who are infibulated can experience chronic urinary tract infections. With recurrence of UTI, suppressive antimicrobial medication is an option, although defibulation is preferable; however, currently there are no known systematic studies evaluating the efficacy of prophylactic FIGURE 11 fi Type IIIb FGM/C in a Tanner stage 5 17-year-old with severe dysmenorrhea preventing her from going antibiotic treatment or de bulation in to school during menstrual flow (photo courtesy of N.N.). preventing recurrent UTIs associated with FGM/C.53 health care systems contribute to very rare cases, hematocolpos and In general, clinical experience such complications (Tables 6 hematometra have been documented. indicates that girls who are and 7).45 infibulated may describe their Other painful complications arise urinary stream as being slow and Secondary analysis of cesarean when remnant foreign bodies are left having a dripping quality. As the urine delivery rates has revealed that in the scar during the initial exits the urethra, it trickles under the health care provider unfamiliarity procedure. These can produce sharp scar and then drips past the neo- with defibulation and/or other pains when sitting and walking. Cut introitus. Patients also may complain management options for FGM/C may or trapped nerve fibers have also of overactive bladder on the one hand increase the risk of cesarean been documented, creating very or straining and urinary retention on 46,47 deliveries in some cases. painful neuromas. In both of these the other. These issues may be situations, defibulation and removal attributable to injury of the Long-term complications can be of the foreign body or neuroma are urethra, resulting in urinary placed into 7 major categories: pain, recommended.51 strictures and stenosis and urinary issues, infections, scarring, requiring cystoscopy or urethral infertility, sexual dysfunction,42,48 Dyspareunia in sexually active dilation. It is also possible for the mental health issues,49,50 and other teenagers with type III FGM/C has obstructing scar to enable urinary (Table 5). been seen (see Future Infertility) and crystals to deposit and, as a result, treatment includes defibulation.52 form urinary stones.54 These patients Pain routinely experience sharp pains and Pain is a common long-term One study followed 40 Somali women require defibulation for stone complication after type III FGM/C and whose primary indications for removal. fi can also be present in patients with de bulation were pregnancy (30%), fl type I and II FGM/C. In type III FGM/ dysmenorrhea (30%), apareunia Scarring and Other Postin ammatory C, the narrow neo-introitus creates (20%), or dyspareunia (15%). Of the Reactions a closed environment that can 32 patients surveyed, 94% stated Keloid formation is rare, although not obstruct urinary and menstrual flow. they would highly recommend unknown in FGM/C cases. The main Because of the scarring that obstructs defibulation to others; 100% of problem with the infibulated scar is the introitus, the menstrual flow of patients were pleased with the its obstructive nature. However, other women and teenagers with results, felt their appearance had complications in type II FGM/C infibulation can last longer than improved, and were sexually satisfied, include unintended labial fusions and usual, rendering them unable go to suggesting that the symptoms of cysts (fluid-filled, sebaceous, or school during this time (see Fig 11). teenagers who have undergone FGM/ inclusion cysts or abscesses). There Menstruation may be painful and may C and are experiencing dysmenorrhea are multiple case reports become dark and foul smelling will also be improved by documenting epidermal cysts because of the retention of blood. In defibulation.52 associated with all types of FGM/C.

Downloaded from www.aappublications.org/news by guest on October 2, 2021 10 FROM THE AMERICAN ACADEMY OF PEDIATRICS Of note, large epidemiologic studies conducted in low- or middle-income countries where both FGM/C and HIV and/or hepatitis B are prevalent have not revealed an association between FGM/C and HIV and/or hepatitis B infections.44,58,59 The authors of these studies did not evaluate risk around the time of cutting but months to years after the cutting occurred. To our knowledge, no studies have specifically addressed hepatitis C infection risks. However, given that FGM/C is often performed with unsterile equipment that may be shared between patients, some experts recommend testing girls with FGM/C for these blood-borne infections. Future Infertility Infertility for women with type III FGM/C is influenced by anatomic and psychological barriers as well as from possible recurrent gynecologic infections. In a Sudanese case-control hospital-based study of 99 women without hormonal, iatrogenic, or male-partner risk factors for infertility a diagnostic laparoscopy was performed, and it was found that FIGURE 12 primary infertility was associated WHO FGM/C subtype diagrams. A, Female genital mutilation (FGM) type 1. B, FGM type 2. World Health Organization. Copyright © World Health Organization 2016. Also published in Abdulcadir J, Catania L, with the increased anatomic damage 60 Hindin MJ, Say L, Petignat P, Abdulcadir O. Female genital mutilation: a visual reference and learning inflicted by FGM/C. Repeated tool for health care professionals. Obstet Gynecol. 2016;128(5):959–960. attempts at penetration through the infibulated scar may be painful and Some cysts have been documented to suppositories, this is an alternative difficult, and stretching of the grow up to 12 cm in size and are not treatment. For girls and teenagers infibulated introitus may take only extremely painful but also with chronic infections, defibulation months. The learned association become problematic for ambulation by an adolescent or general between sexuality and pain may and sitting.55,56 Dissecting the cyst gynecologist experienced with a have significant negative effect on and defibulating the patient is managing FGM/C is recommended. the woman’s willingness to have necessary in these cases (see Fig 17). intercourse and, thereby, on fertility. A study in rural Gambia of teenagers In general, if there are any issues Other Infections and women (15–54 years) with related to FGM/C that negatively Given the infibulated scar, this clinically diagnosed type I or II FGM/C affect sexual health, referral to enclosed environment fosters (N = 671) also revealed a higher appropriate mental health supports is bacterial and fungal growth and prevalence of bacterial vaginosis and advisable for both women and their predisposes girls to chronic or herpes simplex virus 2 compared partners. recurrent vaginal infections. In these with teenagers and women without cases, oral antifungal and FGM/C but did not reveal an Sexuality antimicrobial medications are increased risk for perineal or anal There are currently no studies that recommended. If the patient’s neo- damage, vulvar tumors, dyspareunia, have been specifically focused on introitus is not too small and she is infertility, organ prolapse, or other sexuality in teenagers with FGM/C. comfortable with introducing vaginal reproductive tract infections.57 The impact of FGM/C on female

Downloaded from www.aappublications.org/news by guest on October 2, 2021 PEDIATRICS Volume 146, number 2, August 2020 11 small cross-sectional study of Egyptian women and girls (N = 204, ages 14–19 years), those with and without FGM/C were compared, and a significantly higher prevalence of somatization, depression, and anxiety was found in those with FGM/C.49

Defibulation Defibulation, also known as deinfibulation, is the procedure that opens the infibulated scar in type III FGM/C and exposes the vaginal introitus and urethral opening. In general, in some regions of the world, including Djibouti, defibulation is most often performed in newly married teenagers by a traditional birth attendant or midwife so that sexual intercourse may occur. In other regions, including North Sudan, Somalia, and areas in southern Egypt, the husband opens the neo-introitus over time through ongoing attempts at penetration. However, some teenagers and women who have access to medical care may have defibulation performed by a medical professional at marriage or after their official engagement.

FIGURE 12 Teenagers who are infibulated may Continued. present to health care providers requesting defibulation. Given the sexuality has been evaluated in a few date, there are no conclusive results significant morbidity associated with fi studies in adult women. However, the revealing long-term bene ts. If type III FGM/C, experts believe that lack of standardization of FGM/C teenagers inquire about the option of defibulation should be recommended subtype studied and the use of reconstructive surgical repair, it is for all girls and teenagers with type nonvalidated questionnaires make important to review the fact that III FGM/C, particularly when fi interpretation of results dif cult. there is still inadequate data that complications are currently present. Some studies reveal that women with assure successful outcomes, including Similarly, teenagers who are pregnant FGM/C have reported less sexual a decrease in pain and increased should also be counseled regarding 65,66 desire, arousal, orgasms, and sexual pleasure. risks during and after pregnancy and satisfaction compared with women should be strongly encouraged to 61 Mental Health without FGM/C as well as increased undergo defibulation. rates of dyspareunia.62 Other There has been limited high-quality research has revealed no association research on the effects of FGM/C on Of note, given that girls and teenagers between FGM/C and sexual the mental health of girls and women. who are infibulated have varying intercourse frequency and that One 2010 systematic review of the degrees of obstruction of urinary or women with FGM/C also initiated literature included 17 studies of menstrual flow, have varying degrees sexual intercourse more than women women with and without FGM/C (N = of pain, and/or have risks for normal without FGM/C.63,64 12 755) and revealed insufficient vaginal delivery, such signs and evidence to support or refute the link symptoms should underscore the Surgical clitoral reconstruction is an of FGM/C to specific mental health medical necessity for treatment. emerging area of study. However, to diagnoses.48 In a more recent 2017 Given the medical necessity of

Downloaded from www.aappublications.org/news by guest on October 2, 2021 12 FROM THE AMERICAN ACADEMY OF PEDIATRICS FIGURE 13 Female genital anatomic structures. Clitoral excision refers to the cutting of the glans (which is the distal part of the body of the clitoris) or the glans and part of the body. In all cases, part of the clitoral body remains intact, with scarring overlying the remaining body. The bulbs and crura, two other sexual erectile structures, have not been noted to be affected in FGM/C cases. Reprinted with permission from Abdulcadir J, Botsikas D, Bolmont M, et al. Sexual anatomy and function in women with and without genital mutilation: a cross-sectional study. J Sex Med. 2016;13(2):227–237 and Pauls RN. Anatomy of the clitoris and the female sexual response. Clin Anat. 2015;28(3):376–384. treatment in these cases, Medicaid is that there are currently few trained should cover the defibulation. specialists with experience in managing FGM/C, particularly in FIGURE 16 In all cases of defibulation, it is young children. Similarly, it may be Clinical approach to external female genital advised that an experienced pediatric difficult to refer a girl or teenager to examination. (Reprinted with permission from gynecologist (for young children), American Academy of Pediatrics. Visual Di- a male provider, and much discussion agnosis of Child Abuse on CD-ROM. 3rd ed. Elk gynecologist (for older children and and support will need to be provided Grove Village, IL: American Academy of Pediat- teenagers), urologist, or to facilitate successful care. rics; 2008.) urogynecologist be identified to Counseling patients who do not want perform the procedure. One challenge to be defibulated, despite current visits, and it may be necessary to complications, may be challenging dispel fears of loss of virginity in given social and cultural pressures. cases of defibulation.67 Mental health This counseling may take multiple and social issues may arise and need to be addressed through counseling and support. Multiple legal and ethical issues may also arise in cases in which a teenager desires defibulation but she does not want her parents to know because of fear of stigma and/or refusal by her parents (see The Law and FGM/C in Minors in the United States, Ethical Analysis, and Case 2 in the Appendix FIGURE 14 for further information). Normal prepubertal female anatomy. Labia minora is often less well-developed than pic- 110 For young children who are tured in prepubertal girls. (Reprinted with FIGURE 15 fi permission from Graham EA. Ritual female Prepubertal female introitus. (Reprinted with de bulated, general anesthesia is genital cutting [RFGC] PowerPoint slides. 2014. permission from American Academy of Pediat- recommended in all cases. Available at: https://ethnomed.org/resource/ rics. Visual Diagnosis of Child Abuse on CD- ritual-female-genital-cutting-rfgc-powerpoint- ROM. 3rd ed. Elk Grove Village, IL: American If a teenager is pregnant, defibulating slides/. Accessed April 30, 2020.) Academy of Pediatrics; 2008.) her under spinal anesthesia during

Downloaded from www.aappublications.org/news by guest on October 2, 2021 PEDIATRICS Volume 146, number 2, August 2020 13 TABLE 4 Resources Title or Description Source Care of Girls and Women Living with Female Genital Mutilation: A Clinical Handbook. WHO111 To find a regional FGM/C expert, please go to the US End FGM/C Network Web site https://endfgmnetwork.org/ Female Genital Mutilation/Cutting: Existing Federal Efforts to Increase Awareness Should Be US Government Accountability Office112 Improved WHO Guidelines on the Management of Health Complications From Female Genital Mutilation WHO113 Eliminating Female Genital Mutilation: An Interagency Statement: OHCHR, UNAIDS, UNDP, UNECA, WHO2 UNESCO, UNFPA, UNHCR, UNIFEM, WHO Female Genital Mutilation/cutting: A Statistical Overview and Exploration of the Dynamics of United Nations Children’s Fund16 Change Female Genital Mutilation (FGM) Frequently Asked Questions United Nations Population Fund114 Background information and educational pamphlets in Amharic, Arabic, French, Somali, Swahili, US Citizenship and Immigration Services115 and Tigrinya Guidelines for the US Domestic Medical Examination for Newly Arriving Refugees Centers for Disease Control and Prevention116 Immigrant Child Health Toolkit American Academy of Pediatrics117 Female Genital Mutilation. A Visual Reference and Learning Tool for Health Care Professionals Abdulcadir et al118; video available at https://www.youtube. com/watch?v=XRid7jIUzMY Defibulation: A Visual Reference and Learning Tool Abdulcadir et al68 Female Genital Mutilation/Cutting and Violence Against Women and Girls: Strengthening the Policy United Nations Entity for Gender Equality and the Linkages Between Different Forms of Violence Empowerment of Women12 Overview: Female Genital Mutilation (FGM) National Health Service119 Female genital mutilation (FGM): Resources for Healthcare Staff National Health Service, Department of Health and Social Care120 FGM: Mandatory Reporting in Healthcare National Health Service, Department of Health and Social Care121 Canadian FGM/C statement Canadian Paediatric Society122 Australian FGM/C statement The Royal Australasian College of Physicians123,124 New Zealand FGM/C statement The FGM Education Programme124 the second trimester is advised. In WHO recommends local anesthesia as COMMUNITY ENGAGEMENT countries where spinal anesthesia best practice, this recommendation is Within the United States, emerging may not available, local anesthesia not based on strong evidence. Local evidence indicates may be used, if necessary. This allows anesthesia is not recommended a misunderstanding and distrust ample time for healing and will (unless in a country where spinal and among immigrant communities with facilitate providing care during labor. general anesthesia may not be 68 fears of deportation, criminalization, However, some teenagers may available), because women may raids by Immigration and Customs fl present late in the third trimester. report ashback memories from the Enforcement, and fear of being fi They can still be de bulated up to 34 day when they were cut, as noted in reported to Child Protective Services ’ 69 – weeks gestation, which will allow for one case report. (CPS).70 74 Some health care and the neo-vulva to heal adequately social service providers may also not fi For type III FGM/C, timing and before labor. Otherwise, de bulating understand the long-term physical fi complications of defibulation have the patient preferably in the rst and mental health-related morbidity not been systematically studied in stage of labor or when the baby is associated with the practice of FGM/ prepubertal girls. For prepubertal crowning are options and are the C.75 In addition, language barriers girls with complications, including routine approaches in some may complicate patient-provider pain, obstruction of urinary stream, African countries, although these communication and have been and recurrent urinary tract infections, approaches have not been demonstrated to negatively affect fi and teenagers with dysmenorrhea systematically studied. De bulation health-seeking behavior and health fi related to FGM/C, it is important that 30,76,77 in the rst stage of labor does services use. facilitate pelvic examinations, the health care provider begin catheterization, and general conversations with the parents and/ A grassroots community-based and monitoring during labor while also or child regarding the need for community-led approach is essential allowing for procedures on less defibulation to treat these medical when working with affected edematous tissues and quicker complications and associated populations to ensure that policies, delivery. If a teenager is not pregnant, morbidity as well as whether the girl preventive interventions, and she can be defibulated under regional would benefit from mental health advocacy are all informed by the or general anesthesia. Although the counseling. perspectives, experiences, and needs

Downloaded from www.aappublications.org/news by guest on October 2, 2021 14 FROM THE AMERICAN ACADEMY OF PEDIATRICS TABLE 5 FGM/C Immediate and Long-Term Complications Immediate Complications Long-term Complications Category Description Category Description Bleeding Hemorrhage41 Urinary Urethral strictures41 Anemia — Meatal obstruction41 Hypotension — Chronic urinary tract infection125 Hypovolemic shock — Pyelonephritis Death41 — Meatitis —— Urinary crystals Infection Cellulitis Infection Chronic yeast infections Abscess41 — Chronic bacterial vaginitis41 Fever41 — Herpes simplex virus Pelvic inflammatory disease — Vulvar or periclitoral abscess41 Tetanus — No definitive data on risks for hepatitis B, hepatitis C, or HIV44,126 Gangrene —— Septic shock —— Poor healing41 —— Oliguria Dehydration Scarring Fibrosis41 Urethral injury41 — Keloids41 Urethral edema41 — Partial fusion Urinary retention41 — Complete fusion —— Hematocolpos41 —— Inclusion or sebaceous cyst41 Fractures Clavicle Pain Neuromas Femur — Chronic vaginal infections41 Humerus — Dyspareunia41 —— Vaginismus —— Dysmenorrhea41 — Infertility Vaginal stenosis —— Infibulated scar —— Dyspareunia41 —— Apareunia — Mental health Anxiety disordersa —— Depressiona —— Posttraumatic stress disordera —— Somatisationa —, not applicable. a Large systematic studies are lacking. Some small studies have revealed an association between FGM/C and mental health diagnoses.49 of those directly affected by FGM/C.78 personnel. It is important to assess need to be explored and created. It is There are varying approaches to whether local efforts already exist recommended that pediatric health engage FGM/C-affected communities because it will be much easier to care professionals nurture that need to be culturally and build and/or expand on these meaningful partnerships with FGM/ linguistically tailored on the basis of partnerships. If there are no C-affected communities to foster availability of local expertise, preexisting relationships, new greater trust, open dialogue, resources, infrastructure, and community-based partnerships may counseling, education, and community outreach to enhance culturally sensitive care for affected TABLE 6 Obstetric Difficulties in Type III FGM/C populations and to prevent FGM/C Obstetric Difficulties among female minors. In the past, the Prolonged labor focus of outreach efforts has Increased risk of perineal tears or episiotomy principally targeted women, who Perineal wound infection have been at the forefront of the Difficult episiotomy repairs perpetuation of FGM/C. However Postpartum hemorrhage men, as husbands, fathers, brothers, Sepsis Difficulty placing fetal scalp electrode, Foley catheter, or intrauterine pressure catheter sons, community leaders, and Difficulty performing fetal scalp pH religious figures, also play a critical Adapted from Nour NM. Female genital cutting: clinical and cultural guidelines. Obstet Gynecol Surv. 2004; role in changing social norms; 59(4):272–279. encouraging greater dialogue with

Downloaded from www.aappublications.org/news by guest on October 2, 2021 PEDIATRICS Volume 146, number 2, August 2020 15 TABLE 7 Perinatal Complications of FGM/C medical interpreters, patient during their training. Hence, students, Perinatal Complications navigators, community health including medical and nursing Increased cesarean deliveries workers, refugee resettlement students, residents, and fellows Stillbirth agencies, and public health across various health, social Low birth wt (data inconclusive)a departments. In addition, culturally science, and public health Increase rates of infant resuscitation appropriate and language-congruent professions, should also be engaged Adapted from Banks E, Meirik O, Farley T, resources, such as written in clinical care, counseling, education, Akande O, Bathija H, Ali M; WHO Study Group on information on FGM/C, should be and community outreach on FGM/C Female Genital Mutilation and Obstetric Out- come. Female genital mutilation and obstetric made available in health care in such a way that is respectful of outcome: WHO collaborative prospective study settings in the form of posters, patients, caregivers, and in six African countries. Lancet. 2006; pamphlets, or leaflets placed in communities. Models of established – 367(9525):1835 1841. ’ a One recent multicenter prospective study in private areas, such as women s training guidelines and evidence- the Gambia revealed no association between restrooms, and made available in based educational competencies FGM/C and infants with low birth wt but relevant languages. specific to FGM/C are lacking across a statistically significant increased risk of all levels of health professions perinatal death and need for infant re- Since 2015, mandatory reporting suscitation (n = 1208).127 training. A proposed approach to legislation in the United Kingdom has instituting clinician competencies come under increased scrutiny for the includes convening lack of consistent, reliable, high- and engagement of their wives, a multidisciplinary team of experts quality data as well as for the lack of daughters, and sisters in health – comprising key stakeholders from a routine system of monitoring.80 83 services use; and supporting efforts clinical medicine, medical education, Stigmatization of FGM/C-affected toward eventual abandonment of the public health, and research. Their communities and distrust of law practice of FGM/C.77,79 Consequently, expertise in competency development enforcement have resulted in it is critically important to include processes as well as in FGM/C would underreporting, along with a lack of both men and women in strategies to address FGM/C-specific knowledge professional awareness and enhance health services use and and skills for clinical practice, patient training.84 Within the context of improve experiences with care while care and handling ethical migration, the impact of supporting community-wide FGM/C conundrums, communication skills, acculturation, education, and length prevention efforts. interprofessional collaboration of stay on changing attitudes toward (including partnering with the practice are critical It is advisable that clinicians seek to community activists), and prevention considerations when determining engage within and across health care – efforts engaging individual families as girls at risk for FGM/C85 87 The first systems and multispecialty provider well as FGM/C-affected dedicated multispecialty clinic in the teams instead of staying within communities.32 Thereafter, evaluative United Kingdom for girls affected by isolated profession-specific silos. performance metrics could be used to FGM/C and girls at risk with complex Such multidisciplinary teams may assess whether clinician health needs uses a pediatric child comprise child abuse specialists, competencies and patient care abuse expert, a pediatric adolescent gynecologists, urologists, and general outcomes are being optimized. gynecologist with expertise in FGM/C, surgeons in addition to nurses, social Moreover, an integrated team-based a child psychotherapist, and workers, teachers, psychologists, approach to health care delivery may a specialist nurse in pediatric and counselors, case managers, certified more effectively address the adolescent gynecology, along with multidimensional facets of providing interpreters.33 Referrals to this holistic care, recognizing the dedicated clinic are evaluated intersection of ethnicity, migration, promptly with genital as well as sex, and gender, which underlies the colposcopy examinations, followed by social construct of FGM/C.88 Efforts further testing, counseling, and to directly engage FGM/C-affected engagement of additional social and communities to engender trust, legal support services, as needed. educate, promote continuity of care, It is advised that attention also be and empower women and girls may paid to ensuring that the next enhance their health literacy and self- generation of health care providers efficacy in seeking care for FGM/ FIGURE 17 and scholars gain critical skills and C-related concerns, navigating the Type IIb FGM/C with large cyst, Tanner stage 5 exposure to culturally appropriate health care system, and preventing female patient (photo courtesy of N.N.). approaches to care for this population future FGM/C.

Downloaded from www.aappublications.org/news by guest on October 2, 2021 16 FROM THE AMERICAN ACADEMY OF PEDIATRICS ETHICAL ANALYSIS also help persuade the family to forgo Outside the United States, many Some have attempted to defend FGM/ FGM/C with their other children and countries have laws in place that C by an appeal to cultural relativity, perhaps enable advocacy efforts with criminalize the practice of FGM/C noting divergent mores and their local community as well as (see Table 2). expectations in countries where it is extended family in their country of frequently practiced.89 Such a defense origin. Applicable US Federal and State cannot overcome the fact that, as FGM/C performed by health care Laws a rule, FGM/C may be physically and providers is not uncommon, emotionally damaging, seriously representing 18% of cases from all The Federal Prohibition of Female affecting a girl’s reproductive, sexual, countries with available data. In some Genital Mutilation Act of 1996 made and mental health. It is intrinsically countries, health care providers are it illegal to perform FGM/C in the a violation of the girl’s human rights, responsible for three-quarters of United States on children and compromising her bodily integrity FGM/C procedures.93 If asked to teenagers younger than 18 years. The without any medical benefit, without perform the procedure, even health act criminalizes circumcising, fi “ her consent (or, frequently, even her care professionals who are morally excising, or in bulating the whole or assent). It represents an extreme case opposed to FGM/C might agree to do any part of the labia majora or labia of sex discrimination through so out of a sense of cultural respect or minora or clitoris of another person attempting to control a woman’s because they believe the alternative who has not attained the age of 3 ” sexuality. For these reasons, the (ie, the family seeking the procedure 18 years, unless deemed medically practice is condemned by a vast from traditional practitioners) to be necessary, and recognizes no religious number of health care even worse. or cultural exemption for the practice organizations.3,90,91 of any type of FGM/C. However, By agreeing to perform the a recent federal district court While condemning the practice itself, procedure, however, health care decision, United States v as discussed previously, it is providers are granting it medical Nagarwala,21,94 has found the statute important to show cultural sensitivity legitimacy, which not only undercuts unconstitutional. Despite this federal to those who practiced FGM/C in the moral prohibition on the court decision invalidating the federal their home countries. Some parents procedure but also contributes to its statute, at the time of this writing, 35 may not have felt they had a choice, spread and ongoing societal states have also enacted specific state “ 95,96 given prevailing cultural expectations, acceptance. As the WHO notes, It can criminal statutes against FGM/C believing that FGM/C gave their also lead some health-care providers (see Table 8). daughters the best chance of to develop a professional and fi succeeding in a society where it was nancial interest in upholding the Although FGM/C performed in ”15 a prerequisite for marriage and practice, and although the another country before US acceptance.92 Other parents might immediate risks could be reduced if immigration is not reportable or not have been fully aware of what the procedure were performed by prosecutable, transporting a child out was going to happen to their children a trained professional, the risks of the of the United States for the purpose of or believed it had some medical previously noted long-term FGM/C (so-called vacation cutting) benefit. Thus, the fact that a girl complications remain. was criminalized in the Transport for underwent this procedure is not Female Genital Mutilation Act of a sign that her parents do not care THE LAW AND FGM/C IN MINORS IN THE 2013. When a child is at risk for about her or that they are more likely UNITED STATES FGM/C, including when traveling to to engage in other forms of abuse. a country where FGM/C prevalence is Within the United States, there are high and in cases in which the girl’s So, although it is important to take several legal issues that confront mother and/or sisters have already active steps to prevent children from health care providers in the context of had FGM/C performed before US subsequently being subjected to a suspected FGM/C case, including immigration, it is recommended that FGM/C, it is also important to treat the following: health care providers have an open families whose children have already 1. applicable federal and state laws; and supportive conversation with the fi undergone FGM/C with compassion. 2. consent and assent; parents regarding the signi cant Experience suggests that building medical complications of FGM/C (see 3. reporting child protection and/or rapport with parents increases the Complications and Management) and criminal activity concerns; probability that they will give legal implications to parents or other fi permission for remedial 4. con dentiality; and caregivers if they have FGM/C interventions. Such an approach may 5. documentation. performed on their child.

Downloaded from www.aappublications.org/news by guest on October 2, 2021 PEDIATRICS Volume 146, number 2, August 2020 17 18 TABLE 8 FGM/C Laws, by State (as of July 12, 2019) State Applicable Law Only Applies to Vacation Cutting Duty To Report Cultural and Ritual Parent or Guardian and Sentence Minors (,18 Provision (Bans Travel (Including FGM as Reasons and/or Circumciser Subject Unless Outside State Child Abuse) Consent Not to Prosecution Otherwise for FGM/C) a Defense Specified) Arkansas A.C.A. 5-14-135, 12-18-103, 16- X X X X X Imprisonment 3–10 y 118-116, 17-80-121, 20-82- 101, 20-82-102 Arizona A.R.S. xx 12-513, 13-705, 13- XXX——Imprisonment 5.25–35 y and fine up to 1214, 13-3620, $25 000 Downloaded from Californiaa Cal. Pen. Code x 273a, 273.4 X ——— X Imprisonment 1–6y Coloradob Col. Rev. Stat. x 18-6-401 ,16 ——X X Imprisonment minimum 4 y Delaware Del. Code Tit. 11, x 780 X ——X X Imprisonment up to 5 y Florida Fla. Stat. x 794.08 X X — X X Imprisonment up to 15 y and/or fine up to $10 000 Georgiac O.C.G.A. x 16-5-27 X X — X X Imprisonment 5–20 y www.aappublications.org/news Idaho I.C 18-1506B, I.C. 19-402 X ——X — Imprisonment up to life Illinois 720 Ill. Comp. Stat. 5/12-34; ——X X X Imprisonment 6–30 y 325 Ill. Comp. Stat. 5/3, 5/4 Iowa I.C.A. 708.16 X X X X — Imprisonment for up to 5 y and fine of $750–$7500 Kansas K.S.A. x 21-5431 X X — X X Imprisonment 89–100 mo Louisiana La. R.S. 14:43.4 X X — X X Imprisonment up to 15 y Maryland Md. Code Health-Gen. x 20-601, X ——X X Imprisonment up to 5 y and/or fine up to 602 $5000 Michigan 1931 PA 328 x 136 1978 PA 368 XX— X X Imprisonment up to 15 y

byguest on October2,2021 x 9159 Minnesota Minn. Stat. x 144.3872, ———X — Imprisonment up to 5 y and/or fine to $10 000 609.2245 Missouri Mo. Rev. Stat. x 568.065 Under 17 ——X X Imprisonment 5–15 y Nevada Nev. Rev. Stat. x 200.5083 X X — X X Imprisonment 2–10 y and/or fine up to $10 000 New N.H. Rev State.x 632-A:10-d X — XX — Imprisonment up to 7 y Hampshire RMTEAEIA CDM FPEDIATRICS OF ACADEMY AMERICAN THE FROM New Jersey N.J. Stat. x 2C:24-10 X X — X X Imprisonment 3–5y New York N.Y. Penal Law x 130.85; N.Y. X ——X X Imprisonment up to 4 y Public Health Law x 207(k) North Dakota N.D. Cent. Code x 12.1-36-01 X ——X — Imprisonment up to 5 y and/or fine up to $10 000 Ohio OH ST xx 2903.32, 2929.14, X — XX — Imprisonment 2–8y,fine up to $40 000, and/ 2929. 18 or a fine up to $15 000 and an additional fine up to $25 000 Oklahoma 21 Okl. St. x 760 —— X — Imprisonment 3 y to life and/or fine up to $20 000 Oregon Or. Rev. Stat. x 163.207 X — X X Imprisonment up to 10 y Pennsylvania 18 Pa. C.S.A. 3132 X X X X X Imprisonment for .10 y Rhode Islandd R.I. Gen. Laws x 11-5-2 —————Imprisonment up to 20 y Consent and Assent

. 2018; Before discussing consent and ne up to fi ne up to assent issues as they pertain to ne up to ne up to fi ne fi fi ne up to fi FGM/C, it is appropriate to review fi ne up to $5000 fi

ne up to $10 000 these concepts. Informed consent is fi Am Fam Physician the legal authorization to provide medical care to an individual. Minor Sentence 10 years and 12 y and/or – – children generally lack sufficient decision-making capacity to provide 5000

– true informed consent, with three notable exceptions. The first $100 000 $1000 $20 000 $20 000 $10 000 $5000 Imprisonment 2 Imprisonment up to life and/or Imprisonment 6 y and/or Imprisonment up to 10 y and Imprisonment 2 Imprisonment 6 mo to 2 y and/or Imprisonment up to 5 y and/or Imprisonment up to 20 y and/or involves the so-called “minor treatment statutes,”97 which vary by state but generally permit minors to consent to treatment of sexually X X X X X X — — transmitted infections, mental illness, substance abuse, or matters to Prosecution

Circumciser Subject related to reproductive health Parent or Guardian and (including contraception, abortion, prenatal care, and pregnancy). If treatment qualifies under a state’s X X X X X X minor treatment statute, a minor fi

a Defense may consent to that speci c Consent Not

Reasons and/or treatment but not to others that fall Cultural and Ritual outside the scope of the statute. Evaluation for FGM/C and treatment of its complications could impact XX X X —— — — reproductive health and, thus, may fall under the minor treatment Child Abuse) Duty To Report

(Including FGM as statute of some states. The second exception involves a minor patient who is legally emancipated. Emancipation98 may X X X —— ——

(Penal Code). be automatically conferred by taking for FGM/C) ”

Outside State fi

Vacation Cutting a speci c action, which varies by

Provision (Bans Travel state, such as getting married or serving in the active duty military, or

18 may be declared by a court after the , ed)

fi minor fulfills specific requirements X XX XX X X X ——

Unless such as being self-supporting and Speci Otherwise

Minors ( either being enrolled in high school or having obtained one’s diploma. x Abandonment and Neglect of Children “ The third exception involves being deemed a “mature minor”99 after being assessed for relevant factors 61-8D-3A 39-13-110, 38-1- x 146.35 8.01-42.5, 18.2-51.7 X

x such as reasoning ability and 22-18-37, 22-18-38,

x 100 xx

xx intellectual capacity. Applicable Law Only Applies to — , no current legislation addressing this issue. 22-18-39 167.001 101 76-5-703, 76-5-704 Again, state laws vary as to the Code 1976 16-3-2210-2240 precise requirements for a minor to be deemed sufficiently mature to Continued make her own health care decisions.

Carolina It is recommended that health care West Virginia W. Va. Code State South South Dakota S.D.C.L. Wisconsin Wis. Stat. Tennessee Tenn. Code TexasUtah Tex. Health & SafetyVirginia Code U.C.A. 1953 76-5-701, 76-5-702, Va. Code Colorado: within child abuse law and one ofRhode few Island: states within where assault doctor-patient statute. and husband-wife privileges are inapplicable in prosecutions for FGM/C. California: enhanced penalty for FGM/C under Georgia: one of few states where husband-wife and other statutory privileges are inapplicable in prosecutions for FGM. 97(1):52A. X, existing law; TABLE 8 States with no existing FGM/Cfrom laws Equality Now. (as Female of genital July mutilation 12, in the 2019): United Alabama, States. Alaska,a Available Connecticut, at: Hawaii, https://www.equalitynow.org/factsheets. Accessed Indiana, May Kentucky, 25,b Maine, 2018 Massachusetts, and from Mississippi, Mishori Montana, R,c Nebraska, Warren New N, Reingold Mexico, R. North Female Carolina,d genital Vermont, mutilation Washington, or cutting. and Wyoming. Adapted providers not assume a minor is

Downloaded from www.aappublications.org/news by guest on October 2, 2021 PEDIATRICS Volume 146, number 2, August 2020 19 mature unless provided with clear may be wise to consult with a child FGM/C that occurred before court documentation. Unlike the abuse pediatrician. immigration to the United States does minor treatment statutes, not meet the legal requirement for emancipated and mature minors are Even if parental permission is not breaching confidentiality by reporting granted the right to make all their required for the reasons noted here, if to state agencies. Furthermore, own medical decisions, which would the patient is old enough to provide reporting past or current FGM/C runs include not only evaluation of FGM/C assent, it is advisable to obtain this the risk of damaging not only the but also interventions to treat it and before proceeding. Additionally, therapeutic relationship with an its complications. maintaining open lines of individual patient and her family but communication with the patient’s also with the immigrant community Outside these specific exceptions, parents is helpful, which may include to which that family may belong. If parents are tasked with making informing them of what is being health care providers are perceived nonemergency medical decisions for performed and why. not only as judgmental (ie, culturally their minor children, which is termed insensitive) but also as agents of the “parental permission.” But even if The other context in which parental state, families may be less likely to a child is incapable of informed permission is not required is seek out needed medical care for consent, she still has a role in medical emergent situations such as active their children. The opportunity for decision-making. It is recognized that hemorrhage or imminent delivery advocacy to prevent future potential a child’s decisional capacity evolves with infibulation. If the parents are instances of FGM/C may also be lost. over time, and so “assent” refers to unavailable to provide permission, a pediatric patient’s agreement to consent may be presumed if three Most states also require a report to be evaluation and treatment to the conditions hold: made if there exists reasonable cause degree that she is able to comprehend to believe that child abuse may occur 1. there is a serious and immediate what is being proposed. This involves in the future. Immediate or imminent threat to life or health; developmentally appropriate risk warrants notification of local law awareness of the nature of the 2. there is a need for urgent enforcement authorities as well. If condition, appreciation of what to intervention (delay in care is not a child experienced FGM/C before expect with tests or treatments, and safe); and immigration to the United States, being free of inappropriate 3. the health care provider which is not reportable, health care pressure.101 In nonemergency administers only care and providers might, in some cases, be situations, the older child and treatment of emergency conditions concerned for other female children adolescent should give assent to that pose an immediate threat to in the home who might subsequently evaluation and/or treatment. the child.103 be subjected to FGM/C. It is important that these situations be There are two other situations in In such situations in which the evaluated individually and on the which parental permission is not parents are available yet withhold basis of a culturally sensitive required for the evaluation and permission, evaluation and treatment discussion with the child’s primary treatment of a child. The first is when may proceed on the basis of the care givers and child, if abuse is suspected, such as FGM/C presumption of medical neglect and developmentally appropriate. It is that occurred in the United States, or the duty of the state to protect the advisable that the dialogue include as vacation cutting after immigration patient from harm (the doctrine of a review of health risks and to the United States. Most states grant parens patriae). complications as well as legal immunity to a provider who assists or repercussions of FGM/C. As needed, it participates in an investigation of is important that cultural concerns be allegation of maltreatment (ie, Reporting Child Abuse addressed and that community conducts a nonemergency evaluation Health care providers in the United organizations be engaged to enhance for abuse, including the physical States are mandated reporters of parental understanding. This dialogue examination, and taking necessary suspected child maltreatment, which should be recorded in the child’s photographs or radiographs and includes FGM/C that occurred in the medical record. performing medically relevant tests) United States or as vacation cutting from any civil or criminal liability outside the United States after this After such education and dialogue, if related to that participation.102 It is practice was criminalized in 2013. a health care provider has reasonable prudent for health care professionals Physical examination findings cause to believe that a child may to be knowledgeable of their state- suggestive of FGM/C, with previous subsequently be subjected to FGM/C, specific child maltreatment legislation documentation of normal genitalia, CPS should be notified. As mentioned (see Table 8). If questions arise, it should prompt reporting to CPS. previously, what constitutes

Downloaded from www.aappublications.org/news by guest on October 2, 2021 20 FROM THE AMERICAN ACADEMY OF PEDIATRICS reasonable cause to believe is Appendix). Laws and regulations external genital examination and, a nuanced and case-specific question. regarding child abuse reporting are particularly, photography of a girl However, it is advised that health care different in other countries. It is or teenager may be difficult to providers remember that the prudent for health care providers to explain to families from other threshold for reporting maltreatment be cognizant of their country-specific cultures, photographs may be does not require incontrovertible requirements. reserved for those times when certainty, just a reasonable suspicion. there are concerns that suspected fi Studies have revealed that Con dentiality FGM/C constitutes child abuse. pediatricians have multiple reasons In the adolescent patient with past, 5. Report impressions objectively, for either delaying or not reporting current, or future FGM/C concerns, it comprehensively, and in as simple suspected maltreatment (ie, mistrust is important for health care providers language as possible. When of the child welfare investigative to have a comprehensive discussion applicable, report alternative system and familiarity with the with the patient about the diagnoses considered relevant to family, to name a few) and that expectations and limitations of the findings and impression, such physicians sometimes require confidentiality. FGM/C that occurred as labial adhesions or normal inordinately high degrees of certainty in the United States or as vacation anatomic variants. In cases in before reporting suspected cutting after it was criminalized in which either identification of the 104 maltreatment. 2013 is subject to federal and state diagnosis of FGM/C is not clear, it reporting laws. If a clinician is uncertain whether the is strongly recommended to consult a health care provider who fact pattern of a particular case Documentation reaches the threshold of reasonable is well versed in diagnosis of FGM/ cause to believe, it is appropriate to Objective and thorough C in prepubertal or pubertal girls, consult a child abuse pediatrician. documentation is extremely depending on the case, given that Expressed intention to engage in important in potential (and actual) type I and II FGM/C may be fi FGM/C, either in the United States or child maltreatment circumstances. dif cult to diagnose (see Table 4). ’ abroad, should prompt a report to The following recommendations (Do s Such consultation is highly ’ ’ CPS if the child’s parent or caregiver and Don t s) may assist health care recommended before reporting to cannot be dissuaded. providers in ensuring appropriate CPS, especially if the family is clinical documentation in the FGM/C amenable. To avoid stereotyping, as well as scenario. 6. If FGM/C has been recently harm to the therapeutic relationship, performed in the United States, or it is important to avoid making Do’s abroad and after initial assumptions and to be attentive to 1. Document in the medical record immigration, create the CPS implicit biases. Many families who the particulars regarding informed report in a timely fashion, originate from countries with high consent or permission (ie, who and as soon after evaluation prevalence of FGM/C may travel back gave it, when it was given, for as possible. to the country of origin for many what purpose, etc). reasons wholly unrelated to FGM/C. 7. Document (in reasonable detail), 2. For children able to assent, obtain Although some communities accept where appropriate, all their assent before proceeding FGM/C as a sign of cultural identity or consultations with colleagues, with examination of external enhancing marriageability, anecdotal patients and/or parents, and genitalia. expert experience suggests that many multidisciplinary partners. mothers from high-prevalence 3. Carefully and objectively document any examination countries do not want to subject their Don’t’s daughters to FGM/C. This may be limitations or mishaps in the particularly true when the mother record. 1. Insert language into the record or fl herself has suffered medical 4. Describe physical findings in a report that is in ammatory, fl complications, although this situation detail. When possible, and after super uous, or highly subjective “ ”“ ”“ ” has not been systematically studied. attaining appropriate consent, (ie, profoundly, faulty, sloppy, “ ”“ ”“ ” Recognizing this, it is appropriate to photo-document abnormal genital terrible, negligent, careless, “ ”“ ”“ ” engage in an open and supportive findings and maintain them in horrible, uncaring, pathetic, “ fi ”“ ” discussion with the family about their a secure fashion in compliance horri c, barbaric, etc). beliefs about FGM/C. This may with privacy rules of the Health 2. State conclusions that are not involve inquiring as to the family’s Insurance Portability and supported by specific facts or by plans for their daughter (see Accountability Act. Given that the medical literature, especially if

Downloaded from www.aappublications.org/news by guest on October 2, 2021 PEDIATRICS Volume 146, number 2, August 2020 21 the identification or diagnosis of however, FGM/C will only be addressing pediatric FGM/C (see FGM/C is unclear or uncertain. identified if primary care providers Table 4). 3. Record information in the record become adept at performing external 6. If genital examination findings or a report that has primarily legal genital examinations on all children at are equivocal for the presence of implications and minimal or no every health supervision FGM/C and risk factors for FGM/ patient care value. appointment. It is recommended that C are present, a specialist trained health care providers who are not in identification of FGM/C should Legal Right to Asylum Protection in comfortable with making an FGM/C be consulted (see Table 4). diagnosis or discussing treatment the United States and FGM/C 7. The management of FGM/C options consult a specialist who is FGM/C presents one other legal should include complete trained in addressing pediatric FGM/ consideration for clinicians, that of US documentation of clinical C. Open and culturally sensitive asylum protection. US asylum findings and the use of ICD-10 discussions among health care protection may be granted to coding. providers, parents, and children someone who has left their native regarding FGM/C is of utmost 8. Health care providers should country because of persecution or fi importance in addressing FGM/C that recommend de bulation for all fear that they will suffer from has already occurred as well as in girls and teenagers with type III persecution,105 including because of preventing future FGM/C from FGM/C, particularly when membership in a particular social occurring. complications are currently group, in this case being female and present. living in a country where FGM/C is 9. In all cases in which defibulation practiced. To be granted asylum, RECOMMENDATIONS is recommended, an experienced a person must either be 1. Health care providers should not pediatric gynecologist (for young physically present in the United perform any type of FGM/C on children), gynecologist (for older States or at a port of entry to the female infants, girls, or teenagers. children and teenagers), United States, and certain other urologist, or urogynecologist conditions must be met through 2. Health care providers caring for should be identified to perform a formal process with US Citizenship girls at risk for FGM/C should the procedure. and Immigration Services. actively counsel families against performing FGM/C, including 10. Standardized training related to The 1996 US ruling, the Matter of when families travel to countries the identification, treatment, Kasinga, established the right of where FGM/C is practiced. management, and culturally asylum protection for women and 3. With consent and/or assent of appropriate communication children potentially facing FGM/C.106 the guardian and/or child approaches needs to be However, the scenarios of past FGM/C documented in the patient’s developed and provided to and parents seeking asylum on the chart, all children should have health care providers who basis that their daughters would be external genitalia examined at all care for FGM/C-affected subjected to FGM/C if they returned health supervision examinations, communities. to their home country are more including the identification of the 11. If FGM/C is suspected to have nuanced and case specific. It is prepuce, clitoris, and labia occurred in the United States, or prudent for clinicians to recognize minora and majora. as vacation cutting after this potential protection for their immigration to the United States, patients and to direct families to an 4. For children with risk factors for the child should be evaluated for immigration law attorney if such FGM/C, it is recommended that potential abuse. Expressed issues arise. clinical assessment of FGM/C status be integrated into routine intention to engage in FGM/C, pediatric care and that a history either in the United States or CONCLUSIONS of FGM/C before US immigration abroad, should also prompt a report to CPS if the child’s FGM/C in children is a complex issue be documented in the health parent or caregiver cannot be with potential medical, mental health, record. dissuaded. and legal ramifications. It has no 5. It is recommended that health clinical benefits and is associated care providers who are not with significant morbidity and comfortable with making an ACKNOWLEDGMENT mortality. Health care providers FGM/C diagnosis or discussing We acknowledge the contribution of caring for diverse patient populations treatment options consult Zeinab Eyega (founder and executive may identify FGM/C in their patients; a specialist who is trained in director, Sauti Yetu Center for African

Downloaded from www.aappublications.org/news by guest on October 2, 2021 22 FROM THE AMERICAN ACADEMY OF PEDIATRICS Women and Families) for her expert J.Y., General Pediatrician what she learned and thought. It is ’ analysis of the case examples Some girls do not recall undergoing essential to determine the teenager s presented in the Appendix. FGM/C, particularly if it occurred at support network, whether peers, a young age. Expert opinion suggests a teacher, or a counselor, that can that some parents do not inform their provide regular guidance and help as ’ APPENDIX: CASE EXAMPLES AND daughters of having been cut. In this needed. The teenager s boyfriend may EXPERT ANALYSIS case, it is important to explain be from within or outside of her fi cultural group. Over time, it is An example of an approach when physical ndings to the patient and important to discuss with the discussing FGM/C with the child or use diagrams, such as the one in Fig 4. teenager whether she is concerned teenager’s mother may include She will need to be supported in about her appearance because of her statements such as the following: understanding why she was cut, and it is recommended that the care FGM/C. If she does not have any I am learning about cultural practices in your provider explore how and if she current health issues or concerns and country and understand that female genital there are no medical problems, the cutting is done in your country. Were you cut as would like to discuss her FGM/C with discussion may be left and revisited if a child? Were your daughters cut while you were her mother, either with the medical still living there? The reason I ask is that I am provider present or not. If the patient concerns arise. a physician and female genital cutting may have is contemplating a sexual severe medical complications, including recurrent S.K.N., Child Abuse and Legal Expert urinary tract infections, painful menstruation, relationship, she may be concerned An honest but respectful discussion and severe scarring blocking the flow of urine about her genitalia appearing ’ and menstrual blood. I want to make sure that different. She may also have needs to occur, exploring the family s you and your daughters are not having these questions about sexual function. current beliefs regarding FGM/C, issues because they can be treated. I also want to These questions may be addressed education about medical make sure that you understand that it is illegal to complications and/or risks, and have a girl cut once she is living in the United either at this visit or at follow-up education about US laws prohibiting States. This includes not sending her to another visits over time. Referral for culturally country to have her cut once she has been living appropriate mental health supports the practice. It is important to in the United States. may also be warranted in this case. If remember to obtain more history this patient has female siblings, it is about when the family came to the Consider discussing FGM/C with the recommended that they also have United States and whether there are mother at the end of the visit after head-to-toe physical examinations, other female siblings who may be at obtaining a history and performing including external genitalia, and risk. A private discussion with the the physical examination. Introducing physical findings should be mother is recommended to learn of a conversation regarding FGM/C early documented. It is recommended that when and where the FGM/C occurred. in a visit may serve as a barrier to a culturally sensitive discussion occur If it occurred outside US jurisdiction, establishing trust and rapport. with the mother and father regarding FGM/C is not grounds for reporting, the medical issues associated with but the safety of other younger FGM/C and that FGM/C performed in female siblings in the house at future risk should be considered. CASE 1 the United States or as vacation cutting is illegal. These discussions R.C.M., Medical Ethics Expert The patient is a 16-year-old teenaged should be documented in the refugee born in Mali and living in patient’s chart, and the diagnosis of The important ethical issues Mauritania before US arrival. She has FGM/C should be included in the (including the patient’s right to established care with her primary patient’s past medical history as understand her condition and the care pediatrician, who explains that having occurred before arrival in the obligation to protect female siblings she needs to perform a full physical United States. who might be at risk) are well examination, including examination addressed in the preceding of her external genitalia. The teenager commentaries. assents to the examination and is Zeinab Eyega, Founder and Executive found to have type IIb FGM/C. The Director, Sauti Yetu Center for girl does not know that she has been African Women and Families CASE 2 cut and has no recollection of the The pediatrician should ask how the The patient is a 17-year-old Sudanese procedure having occurred. She is patient feels about her diagnosis of girl with type III FGM/C performed confused and does not understand FGM/C, if the teenager has questions before US immigration who has what her FGM/C means for her and about the practice, and if she has ever severe dysmenorrhea from partial how she will discuss this with her heard about FGM/C at school or obstruction of menstrual flow. She parents and boyfriend. through friends or family and if so, wants to undergo defibulation. The

Downloaded from www.aappublications.org/news by guest on October 2, 2021 PEDIATRICS Volume 146, number 2, August 2020 23 teenager gives permission for the a meeting with both the teenager and risk of morbidity or mortality), her pediatrician to discuss the issue with parents present. It is important to parents’ unwillingness to give her parents and the medical learn from the parents if they have permission to defibulation could recommendation to undergo noted the medical issues, including represent medical neglect. Even if her defibulation because of medical pain, that their daughter has had condition is not an emergency, the complications. The parents are very because of her type III FGM/C and patient could be declared by the court concerned about defibulation and that the recommended treatment is to be a mature minor, depending on reluctant to give permission. defibulation. Some parents (most the laws of her state,99 and could thus likely the mother) may be concerned have the legal right to consent to the J.Y., General Pediatrician that if their daughter is defibulated, procedure herself. With the teenager’s consent, it is the procedure would affect her virginity. It is important to address recommended to arrange a meeting CASE 3 with the parents to discuss the this concern to ensure that the complications their daughter is teenager continues to have support A 10-year-old girl born in the United having from her FGM/C, including from her parents after defibulation so States in 2008 to Ethiopian refugee severe pain with menstruation from that she does not feel isolated from parents presents for well-child care. partial obstruction of menstrual flow. her parents and other family She had a documented normal Consider initiating the conversation members, both of which could physical examination, with normal with the parents by asking what their negatively affect her emotional well- female genitalia, at her newborn visit. understanding of FGM/C is and being. The parents may need time to Well-child care examinations at 4, 6, exploring why it is or is not important process the information, and another and 8 years of age occurred with the to them. It is recommended to show appointment should be offered as genital examination marked as “ ” diagrams of the teenager’s anatomy well as the option to meet with deferred at each visit. Of note, the and explain the issues that the a counselor to discuss the issue with girl traveled to Ethiopia in 2012 to infibulationiscausingaswellasher the counselor. visit relatives with her mom. A full risk for future complications, including physical examination, including possible issues with scarring, chronic S.K.N., Child Abuse and Legal Expert, external genitalia, reveals type Ib pain, and infertility. Several meetings and R.C.M, Medical Ethics Expert FGM/C. Once the child is dressed, the mother is separately asked if her child may be required to review the medical This scenario is nuanced and could had FGM/C performed. She denies issues and the recommendation to constitute medical neglect by the fi any knowledge of her child being cut de bulate the teenager to relieve parents (depending on the severity of abroad. symptoms, both short- and long-term. symptoms and degree of obstruction). As with case 1, if there are other If possible, the general pediatrician J.Y., General Pediatrician female siblings in the home, it is should consult a child abuse recommended to make arrangements pediatrician because they will know It is important to ask the 10-year-old to perform a full physical examination the local CPS personnel and whether she recalls having been cut. on the other female siblings, including procedures well and may be able to If she does remember being cut, she visualization of the external genitalia, provide an idea of their potential will be able to provide more fi and ndings should be clearly response. Furthermore, the general information regarding when and documented in the chart. A frank but pediatrician should have an honest where it happened as well as who culturally sensitive discussion should and respectful discussion with was involved. If she is unable to occur with the parents, explaining parents about the teenager’s provide any information about the medical complications and the medical need for defibulation and cutting, it is important to document illegality of future FGM/C documented about their failure to consent possibly this information in her medical chart. in the chart as well as documentation requiring a report to CPS for Although more likely the FGM/C of FGM/C having occurred overseas, intervention. occurred overseas on her visit with before immigration, in the past relatives, it is theoretically possible medical history. Although 18 years is the age of that she had FGM/C performed in the majority in nearly every state, some United States. In this case, it would be Zeinab Eyega, Founder and Executive younger patients may possess reasonable to consult with a child Director, Sauti Yetu Center for sufficient decision-making capacity to abuse specialist in your state. As with African Women and Families make informed and voluntary health cases 1 and 2, if there are other If the teenager consents to allowing care decisions.101 If her condition female siblings in the house, these a discussion with her parents, the represents a current threat to her children should be examined, and pediatrician should facilitate health (in terms of pain, suffering, or physical findings and medical and

Downloaded from www.aappublications.org/news by guest on October 2, 2021 24 FROM THE AMERICAN ACADEMY OF PEDIATRICS legal education regarding FGM/C CASE 4 S.K.N., Child Abuse and Legal Expert should be clearly documented in the The patient is a 5-year-old female A thorough psychosocial history ’ patient s health record. refugee from Somalia via a Kenyan should be obtained to assess the refugee camp who had type IIIb FGM/C social dynamics of the family. An Zeinab Eyega, Founder and Executive performed 6 months before US honest and respectful discussion Director, Sauti Yetu Center for immigration. The child has her urethral should occur that, as in case 2, should African Women and Families opening covered by labia minora, and highlight the possible need to report urinary stream occurs through a 2 3 to CPS if permission is denied for the The pediatrician should start by 2 mm opening in the otherwise sealed health and safety of the child. Again, if speaking with the parents separately labia minora. The patient has reported available, consultation with a child from the child and explaining that her delay in bladder emptying and pain, abuse pediatrician is advised because examination reveals FGM/C that was per maternal report. She has no report that individual will know the local performed after she was born in the of past urinary tract infections, CPS personnel, procedures, and United States. It is important to show prolonged fever, or vomiting. responses well. diagrams revealing the difference between a cut and uncut child so that J.Y., General Pediatrician R.C.M., Medical Ethics Expert the parents understand. Ask The patient has a condition that leads questions about other family A supportive discussion should occur to pain and impaired urinary outflow. members and if they have also had with the parents regarding the pain and Irrespective of the cause, this needs to FGM/C. In some cases, biological medical complications associated with be addressed. The clinical situation parents may not be involved in the the child’s type III FGM/C, including should be explained to the parents as decision to circumcise their daughter risk for recurrent urinary tract well as recommendations made to treat and may not know that she was cut. infections and renal scarring. Diagrams the urinary retention and pain. Parental In such cases, a respected elder in the should be used to demonstrate the refusal of the intervention to address community, such as a grandmother or issues associated with acute urinary these problems suggests they are not aunt, may make this decision for the obstruction. This discussion may take acting in the best interest of the child. girl and have her cut. several visits, with strict return precautions reviewed each time, LEAD AUTHORS including the need to bring the child Janine Young, MD, FAAP S.K.N., Child Abuse and Legal Expert immediately for medical evaluation if the Nawal M. Nour, MD, MPH, FACOG Although this scenario may not be following conditions are present: fever, Robert C. Macauley, MD, FAAP prosecutable as vacation cutting or vomiting,dysuria,orurgencytourinate, Sandeep K. Narang, MD, JD, FAAP reportable, as in case 1, it is advisable frequency of urination, and/or the CONTRIBUTING AUTHOR to gather more psychosocial history inability to pass urine. With consent of about the family makeup and the the parents, a trusted leader in the Crista Johnson-Agbakwu, MD, MSc, FACOG family’s current beliefs about FGM/C. Somali community may need to be called SECTION ON GLOBAL HEALTH EXECUTIVE on to help support the parents in COMMITTEE, 2019–2020 deciding to allow their child to undergo R.C.M., Medical Ethics Expert defibulation. Patrick T. McGann, MD, MS, FAAP, Chairperson Although the patient is unable to Chiquita Palha De Sousa, MD, MPH, FAAP provide informed consent for Zeinab Eyega, Founder and Executive Heather Haq, MD, MHS, FAAP evaluation and treatment, she is Director, Sauti Yetu Center for Alcy R. Torres, MD, FAAP developing the capacity for assent African Women and Families Ifelayo P. Ojo, MBBS, MPH, FAAP Nicole E. St. Clair, MD, FAAP and thus is entitled to an explanation It is important to use diagrams to Parminder Suchdev, MD, MPH, FAAP, of her condition, provided in review the physical findings of female Immediate Past Chairperson a nonjudgmental and genital cutting with the parents and developmentally appropriate fashion, to explain why the child is having FORMER MEMBERS OF THE SECTION with her questions welcomed and problems emptying her bladder and Linda D. Arnold, MD, FAAP consistent promises of ongoing has pain. Explain that it is Kevin J. Chan, MD, MPH, FAAP support. The pediatrician should also recommended to have the child Cynthia R. Howard, MD, MPH, FAAP Katherine Yun, MD, MHS, FAAP strive to establish rapport with the defibulated and that this will not family, who may be denying affect her virginity or her ability in COMMITTEE ON BIOETHICS, 2019–2020 knowledge because of fear of the United States to marry later in Robert Conover Macauley, MD, MDiv, FAAP, repercussions or may truly be life. If there are other daughters, they Chairperson unaware. should also be examined. Ratna Basak, MD, FAAP

Downloaded from www.aappublications.org/news by guest on October 2, 2021 PEDIATRICS Volume 146, number 2, August 2020 25 Gina Marie Geis, MD, FAAP James P. Scibilia, MD, FAAP Florence Rivera, MPH Naomi Tricot Laventhal, MD, FAAP, Section Erick Amick, MPH, MA Member – Section on Bioethics LIAISONS Douglas John Opel, MD, MPH, FAAP ACKNOWLEDGMENTS Mary Lynn Dell, MD, DMin, Committee on Mindy B. Statter, MD, FAAP Bioethics Liaison – American Academy of The authors acknowledge the COMMITTEE ON MEDICAL LIABILITY AND Child and Adolescent contribution of Zeinab Eyega, Douglas Scott Diekema, MD, MPH, FAAP, RISK MANAGEMENT, 2019–2020 Founder and Executive Director, Sauti Committee on Bioethics Liaison – American Jonathan M. Fanaroff, MD, JD, FAAP, Board of Pediatrics Yetu, Center for African Women and Chairperson David Shalowitz, MD, Committee on Families, for her expert analysis of the Robin L. Altman, MD, FAAP Bioethics Liaison – American College of case examples presented in the Steven A. Bondi, JD, MD, FAAP Obstetricians and Gynecologists Appendix. Sandeep K. Narang, MD, JD, FAAP Richard L. Oken, MD, FAAP TECHNICAL CONSULTANT John W. Rusher, MD, JD, FAAP Jasmine Abdulcadir, MD, FMH Karen A. Santucci, MD, FAAP ABBREVIATIONS James P. Scibilia, MD, FAAP LEGAL CONSULTANT Susan M. Scott, MD, JD, FAAP CPS: child protective services Laura J. Sigman, MD, JD, FAAP Nanette Elster, JD, MPH, Committee on FGM/C: female genital mutilation Bioethics Legal Consultant Willa Michelle Terry, MD, FAAP or cutting Robert Turbow, MD, JD, FAAP STAFF ICD-10: International Classification FORMER MEMBERS OF THE COMMITTEE Terrell Carter, MHS of Diseases, 10th Revision Robin L. Altman, MD, FAAP Sherri L. Smith, MPH WHO: World Health Organization Sandeep K. Narang, MD, JD, FAAP Julie Kersten Ake

This document is copyrighted and is property of the American Academy of Pediatrics and its Board of Directors. All authors have filed conflict of interest statements with the American Academy of Pediatrics. Any conflicts have been resolved through a process approved by the Board of Directors. The American Academy of Pediatrics has neither solicited nor accepted any commercial involvement in the development of the content of this publication. DOI: https://doi.org/10.1542/peds.2020-1012 Address correspondence to Janine Young, MD, FAAP. E-mail: [email protected] PEDIATRICS (ISSN Numbers: Print, 0031-4005; Online, 1098-4275). Copyright © 2020 by the American Academy of Pediatrics FINANCIAL DISCLOSURE: Dr Johnson-Agbakwu has a grant relationship with Arizona State University from the 2018 copyright of “Female Genital Mutilation/Cutting (FGM/C): A Visual Reference and Learning Tool for Health Care Professionals.” FUNDING: No external funding. POTENTIAL CONFLICT OF INTEREST: Dr Johnson-Agbakwu has a grant relationship with Arizona State University from the 2018 copyright of “Female Genital Mutilation/Cutting (FGM/C): A Visual Reference and Learning Tool for Health Care Professionals.”

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Downloaded from www.aappublications.org/news by guest on October 2, 2021 PEDIATRICS Volume 146, number 2, August 2020 31 Diagnosis, Management, and Treatment of Female Genital Mutilation or Cutting in Girls Janine Young, Nawal M. Nour, Robert C. Macauley, Sandeep K. Narang, Crista Johnson-Agbakwu, SECTION ON GLOBAL HEALTH, COMMITTEE ON MEDICAL LIABILITY AND RISK MANAGEMENT and COMMITTEE ON BIOETHICS Pediatrics 2020;146; DOI: 10.1542/peds.2020-1012 originally published online July 27, 2020;

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Downloaded from www.aappublications.org/news by guest on October 2, 2021 Diagnosis, Management, and Treatment of Female Genital Mutilation or Cutting in Girls Janine Young, Nawal M. Nour, Robert C. Macauley, Sandeep K. Narang, Crista Johnson-Agbakwu, SECTION ON GLOBAL HEALTH, COMMITTEE ON MEDICAL LIABILITY AND RISK MANAGEMENT and COMMITTEE ON BIOETHICS Pediatrics 2020;146; DOI: 10.1542/peds.2020-1012 originally published online July 27, 2020;

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