Diagnosis, Management, and Treatment of Female Genital Mutilation or Cutting in Girls

 
Diagnosis, Management, and Treatment of Female Genital Mutilation or Cutting in Girls
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                   a
                                                                                            Department of General Pediatrics, Denver Health Refugee Clinic, and
adolescence, and has significant 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
                                                                                           Women’s Health Center, Department of Obstetrics and Gynecology,
C worldwide. Some estimate that more than 500 000 girls and women in the                   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
urologists, and pediatric urogynecologists. This clinical report is the first               Clinical reports from the American Academy of Pediatrics benefit from
                                                                                           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;145(6):
                                                                                               e20201012

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PEDIATRICS Volume 145, number 6, June 2020:e20201012                                    FROM THE AMERICAN                 ACADEMY OF PEDIATRICS
Diagnosis, Management, and Treatment of Female Genital Mutilation or Cutting in Girls
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
much of the world. The United                          this practice).6,7 FGM/C is                    and may, therefore, not be precise or
Nations,1 the World Health                             predominantly performed on children            accurate.13 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
and Gynecology,3 and the American                      typical age varies by region of the            United States who have had FGM/C
Medical Association4 are among                         world, country, state, province, and           performed.13
multiple organizations that                            even town or village8 (see Fig 2).
                                                                                                      The majority of FGM/C occurs in 30
unequivocally oppose all forms of                      However, the vast majority of
                                                                                                      African and Middle Eastern countries,
FGM/C (see Table 1).                                   medical literature, teaching, and
                                                                                                      with highest prevalence in Egypt,
                                                       research is focused on chronic
FGM/C involves medically                                                                              Somalia, Guinea, Djibouti, Mali, Sierra
                                                       issues affecting women of
unnecessary cutting of parts or all of                                                                Leone, Sudan, and Eritrea.14 However,
                                                       childbearing age and on the
the external female genitalia,                                                                        FGM/C also occurs with unknown
                                                       management of FGM/C during
including the clitoris, prepuce, labia                                                                frequency in Yemen, Oman, the
                                                       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
morbidity and mortality and is not                     To date, there are neither national            Indonesia15 and has been reported to
associated with any medical benefit.                    nor international clinical practice            occur sporadically in Russia16,17 and
Notwithstanding this morbidity, it is                  guidelines that are specifically                Colombia.18 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
thousands of years, predating                                                                         clustered on the basis of economic
                                                       This clinical report’s primary goal is
Judaism, Christianity, and Islam.5                                                                    status, level of education, rural versus
                                                       to educate pediatric health care
Historically and in present-day, FGM/C                                                                urban geographic location, ethnic
                                                       providers on the continued
is a cultural practice not directly tied                                                              and/or tribal affiliation, and religious
                                                       occurrence of FGM/C, the populations
to any specific religion, ethnicity, or                                                                beliefs. In half of the countries with
                                                       that it affects, diagnosis,
race and has been reported to still                                                                   available data on FGM/C prevalence,
                                                       complications, treatment
occur throughout the world, including                                                                 most girls have had FGM/C
                                                       options, and the provision of
in the United States, but with higher                                                                 performed before 5 years of age
                                                       culturally sensitive counseling,
prevalence in parts of the Middle                                                                     (see Fig 2).
                                                       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
specialists). As such, it is of utmost importance to   adolescents are difficult 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
is an accepted term adopted by many                    United Nations Children’s Fund                 of Michigan.22 This specific 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

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2                                                                                                         FROM THE AMERICAN ACADEMY OF PEDIATRICS
Diagnosis, Management, and Treatment of Female Genital Mutilation or Cutting in Girls
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
Colombia.15–18 South Sudan seceded from Sudan in 2011 but is not noted on this map.107 Repro-
                                                                                                               FGM/C type III, or infibulation,
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

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PEDIATRICS Volume 145, number 6, June 2020                                                                                                                         3
Diagnosis, Management, and Treatment of Female Genital Mutilation or Cutting in Girls
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

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4                                                                                                   FROM THE AMERICAN ACADEMY OF PEDIATRICS
Diagnosis, Management, and Treatment of Female Genital Mutilation or Cutting in Girls
TABLE 2 Timeline of International Legislation Against FGM/C                                                              may also be very limited.
 Country                                                                               Year Legislation Enacted    a     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
 Ghana                                                                                         1994, 2007b               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
inflammatory and also difficult 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,

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PEDIATRICS Volume 145, number 6, June 2020                                                                                                                        5
Diagnosis, Management, and Treatment of Female Genital Mutilation or Cutting in Girls
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-
agnosis of Child Abuse on CD-ROM. 3rd ed. Elk                   FIGURE 4                                                         difficult 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

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6                                                                                                             FROM THE AMERICAN ACADEMY OF PEDIATRICS
Diagnosis, Management, and Treatment of Female Genital Mutilation or Cutting in Girls
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-             depending on the type of FGM/C
powerpoint-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

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PEDIATRICS Volume 145, number 6, June 2020                                                                                                       7
Diagnosis, Management, and Treatment of Female Genital Mutilation or Cutting in Girls
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
from World Health Organization. Copyright © World Health Organization 2016. Also published in                    COMPLICATIONS AND MANAGEMENT
Abdulcadir J, Catania L, 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)                       children and live in countries with
indicated.                                                coding,39 as indicated. A guide to                     intermediate and high prevalence of
                                                          ICD-10 coding and definitions 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 from World Health Organization. Copyright © World Health Organization 2016. Also published
in Abdulcadir J, Catania L, Hindin MJ, Say L, Petignat P, Abdulcadir O. Female genital mutilation: a visual      Girls with type III FGM/C most often
reference and learning tool for health care professionals. Obstet Gynecol. 2016;128[5]:959.)                     have their legs bound for up to

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8                                                                                                         FROM THE AMERICAN ACADEMY OF PEDIATRICS
Diagnosis, Management, and Treatment of Female Genital Mutilation or Cutting in Girls
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
                                                                                                         HIV, hepatitis B, or hepatitis C, some
FIGURE 9
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 from World Health Organization. Copyright © World Health             for these infections at the initial visit
Organization 2016. Also published in Abdulcadir J, Catania L, Hindin MJ, Say L, Petignat P, Abdulcadir   and at least 6 months after cutting
O. Female genital mutilation: a visual reference and learning tool for health care professionals.
Obstet Gynecol. 2016;128[5]:959.)
                                                                                                         has occurred.44 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 from World Health Organization. Copyright © World
Health Organization 2016. Also published in Abdulcadir J, Catania L, Hindin MJ, Say L, Petignat P,
                                                                                                         severity of FGM/C, data are limited,
Abdulcadir O. Female genital mutilation: a visual reference and learning tool for health care pro-       and it is likely that the combination of
fessionals. Obstet Gynecol. 2016;128[5]:961.)                                                            obstructed labor and substandard

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PEDIATRICS Volume 145, number 6, June 2020                                                                                                       9
Diagnosis, Management, and Treatment of Female Genital Mutilation or Cutting in Girls
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
Type IIIb FGM/C in a Tanner stage 5 17-year-old with severe dysmenorrhea preventing her from going   antibiotic treatment or defibulation 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
deliveries in some cases.46,47                     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.
can also be present in patients with               defibulation were pregnancy (30%),
type I and II FGM/C. In type III FGM/              dysmenorrhea (30%), apareunia                     Scarring and Other Postinflammatory
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.

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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
Hindin MJ, Say L, Petignat P, Abdulcadir O. Female genital mutilation: a visual reference and learning   inflicted by FGM/C.60 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

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PEDIATRICS Volume 145, number 6, June 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
studies in adult women. However, the        revealing long-term benefits. 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
interpretation of results difficult.         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
desire, arousal, orgasms, and               sexual pleasure.65,66                           risks during and after pregnancy and
satisfaction compared with women                                                            should be strongly encouraged to
without FGM/C61 as well as increased
                                            Mental Health
                                                                                            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

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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
                                                                                                         American Academy of Pediatrics. Visual Di-
gynecologist (for young children),                   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-                                                            For young children who are
tured in prepubertal girls.110 (Reprinted with       FIGURE 15
permission from Graham EA. Ritual female             Prepubertal female introitus. (Reprinted with       defibulated, 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

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PEDIATRICS Volume 145, number 6, June 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                           fears of deportation, criminalization,
However, some teenagers may                           available),68 because women may                         raids by Immigration and Customs
present late in the third trimester.                  report flashback memories from the                       Enforcement, and fear of being
They can still be defibulated up to 34                 day when they were cut, as noted in                     reported to Child Protective Services
weeks’ gestation, which will allow for                one case report.69                                      (CPS).70–74 Some health care and
the neo-vulva to heal adequately                                                                              social service providers may also not
before labor. Otherwise, defibulating                  For type III FGM/C, timing and
                                                                                                              understand the long-term physical
the patient preferably in the first                    complications of defibulation have
                                                                                                              and mental health-related morbidity
stage of labor or when the baby is                    not been systematically studied in
                                                                                                              associated with the practice of FGM/
crowning are options and are the                      prepubertal girls. For prepubertal
                                                                                                              C.75 In addition, language barriers
routine approaches in some                            girls with complications, including
                                                                                                              may complicate patient-provider
African countries, although these                     pain, obstruction of urinary stream,
                                                                                                              communication and have been
approaches have not been                              and recurrent urinary tract infections,
                                                                                                              demonstrated to negatively affect
systematically studied. Defibulation                   and teenagers with dysmenorrhea
                                                                                                              health-seeking behavior and health
in the first stage of labor does                       related to FGM/C, it is important that
                                                                                                              services use.30,76,77
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

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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
                                                  41
 Bleeding                           Hemorrhage                                 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

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PEDIATRICS Volume 145, number 6, June 2020                                                                                                                                       15
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