“We can be completely open to each other and it feels okay. This group has become a very big part of me.”
— Emily*, name changed to protect patient privacy
Emily’s* second child was supposed to be a girl. Everyone was overjoyed. They couldn’t wait to meet the baby. But after delivering, Emily and her husband wouldn’t allow anyone to visit them; they told a vague story about “complications.”
The truth was that their child was born with a disorder of sex development (DSD), where it’s not immediately clear if the child is female or male.
“It was very hard to swallow,” Emily said.
This wasn’t the kind of diagnosis Emily could share; she couldn’t ask for prayers on Facebook or send a mass email of their story. She feared stigmatization, yes, but also, this wasn’t her condition to disclose – it would be up to her child to decide if and when to tell anyone. As a result, Emily and her husband isolated themselves.
“We had no support,” she says. “It was very traumatic.”
Treatment and support from pediatric urology experts
Two weeks after her child was born, Emily transferred care from their community hospital to Children’s Hospital Colorado at the recommendation of a nurse. Here, the child – whom doctors eventually assigned as male – received much-needed treatment from pediatric urology experts, and Emily and her husband finally found some semblance of a support group among his caregivers.
But it wasn’t until her son was 3 years old and had already undergone four surgeries that Emily had the opportunity to talk to people who could empathize with her.
How parent volunteers became DSD patient advocates
Around that time, in 2012, Cindy Buchanan, PhD, clinical psychologist at Children’s Colorado, read a journal article that recommended every DSD program include a patient advocate as part of the medical team. Having such a person on the team could help parents like Emily feel less alone.
Dr. Buchanan wondered how to implement this role into their SOAR (Sex Development Outcomes – Achieving Results) Clinic. She wanted it to be emotionally safe for everyone involved, and wanted to ensure patient advocates’ messages to families aligned with the team’s medical expertise.
With the help of her colleagues pediatric urological surgeon Jeffrey Campbell, MD, and pediatric endocrinologist Sharon Travers, MD, Dr. Buchanan invited interested parents whose children had DSD, or interested adults with DSD, to become patient advocates by officially joining the hospital’s Association of Volunteers, which could vet and train them. Once the patient advocate became a volunteer, Dr. Buchanan and another colleague would train them in basic psychology practices, such as asking non-threatening questions, to more effectively connect with families.
In the time since, the SOAR Clinic has become the first DSD clinic of its kind in the country to include patient advocates. It has welcomed three patient advocates and has sanctioned a support group. Though Emily isn’t a formal patient advocate yet, she’s been working with Dr. Buchanan to become one.
Finding strength through shared experiences
Recently, Dr. Buchanan invited her to meet a family during a clinic visit to, as Dr. Buchanan put it, “help with the stigma and normalize the experience.” Emily listened to the family’s story, shared her own, and offered perspective on their unique situation.
“It’s wonderful because I get to be there for these people,” Emily says.
She also participates in the bi-monthly support group.
“The families look forward to these meetings because this is where they can vent – where they can let out their so-called secret."
These days, Emily seeks the group’s support in helping her cope with the bullying her now 7-year-old son endures. Emily and her husband still have only told a handful of people outside the hospital about their son’s condition.
But with families at Children’s Colorado, “We can be completely open to each other and it feels okay,” Emily says. “This group has become a very big part of me.”
*Name changed to protect patient’s privacy
Learn more about the Urology Program at Children's Colorado.