CHICAGO — She was born to a young Chicago couple, named Jennifer, and grew into a beautiful long-lashed child with wavy dark hair, big brown eyes and a yearning, youthful desire to be just like all the other girls.
Only she wasn’t. Doctors first noticed her slightly enlarged genitals, and then discovered she had testes inside her abdomen and male chromosomes. And so began a series of surgeries to make things “right.”
Jennifer Pagonis was born intersex, an umbrella term for several conditions in which an infant’s reproductive anatomy doesn’t conform to standard definitions of male or female. The physical effects can be subtle, or very obvious.
A century ago, intersex adults were top draws at circus sideshows. Then, as surgical techniques for ambiguous genitals evolved, doctors began performing surgeries on affected infants and encouraged parents to raise children as the sex they visibly resembled. Many families kept the conditions hidden, fearing stigma and shame.
Pagonis’ parents knew nothing about the conditions – or about the surgeries’ troubling risks, including damage to sexual function, satisfaction and psyche later on.
Now, efforts are underway to change the way intersex children are treated.
Article continues below“The way that we took care of things in the past … where there was a fair amount of secrecy, where there was surgery done in the infant state, and potentially irreversible surgery, is probably not the best way to go about things,” said Dr. Earl Cheng, who runs the 2-year-old sex development disorders program at Chicago’s Ann & Robert H. Lurie Children’s Hospital.
The program is one of several nationwide that employ a team of specialists including surgeons, hormone experts, genetic counselors, psychologists and ethicists. The team helps families weigh their options, including whether surgery should be considered at all.