Update on Intersex Care at Lurie Children’s and Our Sex Development Clinic

A few months ago, we released a statement describing important conversations we are having about the types of care that intersex children and youth receive at Lurie Children’s. We continue to be committed to supporting and advocating for the intersex community and growing in the ways that we can affirm the intersex community moving forward. In that statement, we described a few key action steps that we would take to continue that support. Although some of our actions have been delayed due to COVID 19, we wanted to update the community on the progress we had made and future actions we are planning:   
 

Evolving our policies:  

We are organizing a National Symposium tentatively for Spring of 2021 that will convene a diverse group of stakeholders including LGBTQ individuals, congenital adrenal hyperplasia (CAH) and intersex patients, community members, families, medical ethicists, and clinicians. The symposium will allow for these different groups to meet to discuss the ethics of surgery for infants with CAH. We are currently working on contracting with a consultant who will assist in organizing and running the symposium. At the end of this symposium, our consultant, with the support of our new Health Educator and others, will outline key findings in a white paper or report which will guide our future practices when it comes to performing surgeries on CAH patients.  

In the interim, we continue to not perform non-medically necessary irreversible genital procedures on patients, including those with CAH, until they can participate meaningfully in consenting to these medical procedures for themselves. This is inclusive of clitoroplasty. These surgeries will not be performed on CAH patients until we have evaluated the best practices and ethics and have released a white paper or report on the topic.  

Hiring: 

We have hired Adam Davies (they/them) to fill the role of Health Educator for our Sex Development Clinic. Adam is a recent graduate of Northwestern University and has been working at Lurie Children’s in The Potocsnak Family Division of Adolescent and Young Adult Medicine for the past year and a half providing education and doing outreach work for transgender youth. As an intersex person themselves, they look forward to working within our Sex Development Clinic with youth, organizing and leading sensitivity training and creating educational materials for parents and families. If you have any questions, comments or suggestions you can feel free to contact them at adavies@luriechildrens.org.  

We are also still looking to hire an individual with CAH to fill a similar Health Educator role. That position will be posted soon and will be publicly available for applications on the Lurie Children’s Career website.  

Sharing:  

We are in the process of collaborating with community partners, intersex youth, parents, and families to put together a written resource on decision making around surgeries for youth with Differences of Sex Development. In addition, our Health Educator has started developing a sex education curriculum for clinic patients and families to increase knowledge about puberty, identity, reproductive systems and sexual health to decrease stigma and prepare youth to be active participants in deciding surgical and hormonal interventions for themselves.  

We are also committed to keeping the community informed on our progress regarding our actions and policies. We will be releasing regular updates on the work the Sex Development Clinic has been doing to increase support for the intersex community.  

Listening:  

We have begun reaching out to intersex folks and advocacy groups in the area and across the nation to facilitate a sensitivity training with our Sex Development Clinic. We hope to have this training completed within the next three months. After the training, we will continue to have critical conversations about how to provide care to the patients we serve. We understand that one singular training will not provide all the answers needed but will provide a baseline for continued improvement. 

The Sex Development Program is committed to supporting and advocating for the intersex community and ensuring that patients who attend our clinic achieve optimal care. We expect to continue to evolve in the care we offer, focusing on patient well-being and safety as our number one priority. We look forward to continuing these conversations with community members, patients, and families who attend our clinic.