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

July 28, 2020

We have recently had several important conversations with our staff, patient advocates and community partners about our Sex Development Clinic and the types of care Lurie Children’s offers intersex children and youth. We share a deep respect for those in our community and beyond who advocate for these patients, the intersex community and the broader LGBTQIA+ community. We are grateful to those who have shared their thoughts, personal experiences, and passion for our patients and the care they receive.  The recent feedback has provided our team an opportunity to reflect on our practices and recognize the need for increased transparency related to our philosophy.

Lurie Children’s shares a commitment to support and advocate for the intersex community within our walls and the larger community. We recognize the painful history and complex emotions associated with intersex surgery and how, for many years, the medical field has failed these children. Historically care for individuals with intersex traits included an emphasis on early genital surgery to make genitalia appear more typically male or female. As the medical field has advanced, and understanding has grown, we now know this approach was harmful and wrong. Ann & Robert H. Lurie Children’s Hospital of Chicago and our Sex Development Clinic recognizes this truth. We empathize with intersex individuals who were harmed by the treatment that they received according to the historic standard of care and we apologize and are truly sorry. Since then, brave individuals, both those affected by these conditions and medical professionals who recognized the problems, spoke out about this harmful standard of care. Their testimonials have prompted the medical community to carefully re-evaluate and change the standard of care in significant ways. Since the Sex Development Clinic formed in 2013, we have strived to think progressively about how to further improve care for patients in this field.

As we reflect on how to best support the intersex community going forward, we are clarifying our current policies and taking several actions:

  • Evolving Our Policies: Decisions about if and when surgery is performed, with the sole goal of changing the appearance of genitalia, are some of the most personal decisions an individual can make. Our internal, and now public, policy is that, in intersex individuals (**recognizing those with congenital adrenal hyperplasia (CAH) as potentially a separate patient population) irreversible genital procedures, particularly clitoroplasty, should not be performed until patients can participate meaningfully in making the decision for themselves, unless medically necessary. 

Lurie Children’s Sex Development Clinic has not performed a clitoroplasty on an infant or child in the last 5 years. 

For patients with CAH, many of whom do not consider themselves under the intersex umbrella, the question of early surgery requires immediate and critical evaluation, as there remain unanswered questions about best practices, ethics and how to optimize medical outcomes.  For the overwhelming majority of these CAH patients, surgery plays no role in the management of their medical condition. When it comes to surgery, we are committed to reexamining our approach. Over the next six months, we will carefully and critically evaluate whether the same policy requiring assent/consent from intersex and CAH patients should apply. To answer this complex question, Lurie Children’s will hire an individual with CAH and/or an intersex person to help us convene a diverse group of stakeholders, including LGBTQ+ individuals, CAH and intersex patients and community members, families, medical ethicists and clinicians to investigate the ethics of CAH surgeries in infancy.  This group will outline its findings in a white paper and/or report which will guide our future practices related to surgeries on CAH patients. However, until the white paper and/or report is produced and our practices re-evaluated, we will not perform any surgical procedures on children with CAH outside of those deemed medically necessary. 

  • Hiring: While we created our clinic with a commitment to providing thoughtful, patient-centered, progressive, and evidence-based care of individuals with intersex traits, we know there will always be more to learn. Over the next 3 months, Lurie Children’s will search for, hire and retain individual(s) who identify as intersex, or those with CAH, into decision-making roles in our clinic in order to highlight these important personal perspectives.
  • Sharing: We have taken to heart our responsibility to lead in this new era and are committed to evolving and continuing to improve our practice. We are committed to collaborating with community partners and advocates and will provide a new written resource to all parents and patients considering surgery within the next 3 months. We are dedicated to increased transparency with public groups, modeling best practices for patient care.
  • Listening: We recognize this is a deeply personal topic, close to the hearts of many in our community. In the next 3 months, we will contract with an intersex person or advocacy group to facilitate a sensitivity training with our Sex Development Clinic team. We will continue to engage critical conversations with internal and external stakeholders to ensure we provide exemplary and comprehensive care to all the patients we serve. 

Our Commitment

We believe a “one size fits all” approach may deprive patients of the individualized care they deserve. Such an approach fails to recognize the complexities of human anatomy, psychology, and the nuances that come with individual patient’s needs.

Just as the model of care has evolved over the last several decades, we expect to continue to evolve. We believe it is our duty to listen to all individuals and families, review and scrutinize evidence, and change as appropriate. We have regularly engaged in, welcome, and will continue to discuss how to achieve optimal care for individuals with intersex traits.

Patient well-being and safety are our highest priorities. We commit to being transparent on this topic, listening, raising awareness, and modeling best practices for all our patients and all individuals with intersex traits.

Sincerely,

Dr. Thomas Shanley, President and CEO

Dr. Derek Wheeler, Chief Medical Officer

Dr. Earl Cheng, Division Head, Urology; Co-Head, Reconstructive Pediatric Urology

Dr. Robert Garofalo, Division Head, Adolescent and Young Adult Medicine

and the Sex Development Clinic team