5 Tweens and Teens 127
Readings
A Girl Unlike Other Girls
Katharine Baratz Dalke
Katharine Baratz Dalke, MD, MBE, is a psychiatrist at the University of Pennsylvania
in Philadelphia. Affected by a difference in sex development (DSD), she is actively
involved in the DSD advocacy and support community and works clinically with
individuals with diverse experiences of sex, gender, and sexuality.
Molly is a 16-year-old teenager living in a small community. An only child,
Molly has been adored by her parents from birth, and grew into a healthy,
accomplished, and bright young person. However, Molly has been late in
maturing physically—she did not begin to develop breasts until she turned 15,
and has yet to begin menstruating. When Molly begins to worry that she will
never get her period, her parents take her to see the local gynecologist. During
the exam, the doctor’s face reveals his surprise at discovering that despite her
typical external anatomy, Molly does not have a cervix. The doctor urgently
orders an ultrasound and blood test. From the ultrasound, Molly learns that
she does not have a uterus or fallopian tubes, and instead of ovaries, her gonads
look more like internal testes. A blood test confirms that she has male-typical
XY sex chromosomes. The doctor explains to Molly and her family that she
has been diagnosed with complete androgen insensitivity syndrome (CAIS), a
rare genetic condition in which a baby with XY chromosomes cannot respond
to the male hormones, or androgens, produced by the baby’s testes during
fetal development. Molly, like other people with CAIS, therefore developed
looking like a girl. The good news, the doctor tells her, is that her inability to
respond to androgens means that she will never get acne and will always have
very little body hair. The bad news is that she must have surgery to remove her
testes because they could become cancerous, after which she will have to take
hormone replacement.
Molly is shaken by the diagnosis. She immediately feels a deep sense of
loss at not having a period, and struggles with this new difference between her
and her friends. She wonders how she will explain the doctor’s visits and sur-
gery to them. Molly has always loved children, and although she knows that
having a family is a long way off for her, learning that she is infertile is shock-
ing and painful. Though she has never dated, she also begins to worry whether
a future partner might reject her because they will think she is really a boy or
because she cannot have children. Above all, the doctor’s comment that “I have
only ever read about this condition” reverberates in her mind, and Molly won-
ders if she will ever meet someone who knows what this feels like for her.
Molly is one of many people living with a DSD. Also known as intersex
conditions or disorders of sex development, DSD are naturally occurring bio-
logical variations in the development of male and female sex traits, such as sex
chromosomes (XX and XY), internal reproductive organs (like the uterus, ova-
ries, or testes), or external sex anatomy (the size and shape of the penis, vagina,
or clitoris) in a way that is not typical of standard biological definitions of
