Phoenix medical team caring for kids born with ambiguous genitalia

PHOENIX — Pink or blue?

In hospitals across the county, newborns tucked comfortably into bassinets look relatively uniform minus the subtle pop of color used to separate boys and girls. But for some newborns, that color choice may not be as easy as it seems.

An estimated 2% of children are born intersex, according to Dr. Kathleen van Leeuwen, director of reproductive anomalies and disorders of sexual development at Phoenix Children’s Hospital.

According to the Intersex Society of North America, the term is used to describe a variety of conditions in which a person’s reproductive or sexual anatomy doesn’t fall into the typical category of male or female.

For the past 10 years, van Leeuwen and her team at the hospital have worked to provide not only medical care but emotional support for intersex patients and their loved ones.

She said they see about 50 new patients each year.

“It used to be kind of an emergency that you would do surgery and fix that,” she said. “Well years ago, here in Phoenix, we realized that solution was not working so we started developing other solutions for babies and other solutions for teenagers born with intersex problems.

“We even call these patients ‘individuals with intersex traits’ because just because you’re born different doesn’t mean we need to label you as something that’s wrong.”

Prior to the DSD clinic at PCH, there were few medical professionals who worked with intersex patients.

Erica Weidler Baimbridge, the senior research coordinator with the clinic, said their research showed surgery wasn’t the right choice for most patients.

“The parents actually have this confliction of what’s the best time to do the surgery, whether it’s in infancy or in adolescence,” Weidler Baimbridge said. “Then they also feel ‘if I make the decision with my child, will my child be upset with me?’

“The patients feel that the decision should rest with themselves but there have been some patients quoted saying ‘yeah, I was fine with my parents making the decision for me because I trusted them.”

Van Leeuwen and her team generally shy away from surgery until the patients feel ready.

That’s where Janett Hernandez comes in.

Hernandez is the clinical coordinator and her job goes beyond medical needs.

“Dr. Van Leeuwen will focus on the medical part and I will go in and focus on everything else,” she said. “What hobbies do you have? How many siblings do you have? What high school are you going to go to? Are you dating?”

Many of the kids coming through the clinic will even come to Hernandez for “the talk” when they’re getting ready to start dating.

But the DSD team knows it takes a village to raise a child, regardless or sex or gender. That’s why she’s worked to create an intersex community for patients and families.

“We do offer parties for our families,” Hernandez said. “We offer them every six months. We have these parties where they come in and meet other families that are going through the same struggles.

“Not everyone is going through the same thing but they’re struggling with things.”

The parties and community activities help to welcome new members and show them that being intersex does not mean being isolated from others.

“They say there is no one who understands an intersex person but that’s not true,” van Leeuwen said. “We do. And when they’re ready, we’re here.”

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