Children and families affected by a disorder (or difference) of sex development (DSD) benefit from the skills and experiences of a team of professionals. The providers on our DSD team work together to provide timely, expert care with a focus on being truly patient- and family-centered.
Every child treated as an individual
At our DSD clinic, we work hard to attend to your family’s collective needs and will work together with you to create a customized plan of care. We understand that no two children are the same, even if they have the same diagnosis, and that while diagnostic tests may provide us with essential information, they often do not exclusively determine how we proceed with our care. In addition to information regarding the biology of a specific condition, our care plans take into account the general health of your child as well as your family’s cultural and religious beliefs and treatment preferences. Our goal is to balance all these factors to achieve the best health and well-being for your child and entire family.
Multidisciplinary care with a team approach
The DSD clinic includes providers from four specialty areas that work together to deliver the best possible healthcare to your child and family. Not every child will need to see every specialist, and many conditions do not require procedures or surgery. Our approach to care is truly customized, with each patient’s care team pulled together from multiple specialties to meet his or her individual needs. Our providers function as an interdisciplinary team of health care specialists working together to provide timely, expert care with a focus on being truly patient- and family-centered. Each specialist provides an important way of viewing your child’s health and development.
Anatomy and Surgery:
- Pediatric and Adolescent Gynecologist: A doctor specializing in the gynecological care of children and teenagers, including sexuality, fertility and surgical, issues.
- Pediatric Surgeon: A doctor who has specializes in the treatment of conditions that can be surgically corrected in a baby, child, or adolescent.
- Pediatric Urologist: A doctor specializing in the urinary tract and sex organs. Urologists perform surgery on these systems.
Behavioral Health:
- Child Life Specialists: Specialists who promote effective coping, through play, preparation and education. They provide emotional support for families and encourage optimum development of children facing a broad range of challenging experiences.
- Pediatric Psychology: A child clinical psychology specialist who knows about the emotional, behavioral, social, and learning-related aspects of health conditions that affect children and their families. Some pediatric psychologists specialize in endocrine conditions, including DSD.
- Social Worker: Professionals who help people cope with the emotional, social, and financial aspects of health conditions. They provide counseling and help families locate needed social services and resources.
Endocrinology:
- Pediatric Endocrinologist: A doctor specializing in conditions affecting their hormones and glands, such as the adrenal glands or gonads.
- Pediatric Endocrinology Nurse: A pediatric nurse who has special training and experience in endocrinology.
Genetics:
- Pediatric Geneticist: A doctor specializing in the diagnosis and management of hereditary disorders.
- Genetic Counselor: A specialist in the genetic aspects of health conditions, including the chances parents pass them to their children.
Comprehensive Education & Support
A DSD diagnosis can be associated with difficult decisions for families. Our team is here to provide you with the necessary information and support to help you participate in a shared decision making process.
Some of the support services we provide include working with all families, especially children, to provide age-appropriate education and coping strategies, assisting with financial and insurance barriers, discussing how to increase comfort when sharing information with family and close friends, and taking the time to develop a customized plan to best address your individual needs and preferences.
Additionally, to provide our families with a supportive community, we offer educational and family events as well as peer support. Our ultimate goal is to involve your child and you in a process in which you experience yourselves as members of our team, sharing in all decisions and working towards the long-term physical and emotional well-being of your child and family.
Focused on meeting your needs
Families might benefit from our clinic in different ways. Many patients come to our clinic because their child was recently identified to have a difference of sex development and need more information regarding a diagnosis and treatment plan. After initial medical needs are met, these families typically follow-up in our clinic periodically to address ongoing care and any changing needs.
In other situations, patients have a known diagnosis and an established relationship with their care provider, but families are looking for management recommendations (or a “second opinion”). These patients will often come to our clinic, but return to their referring provider for regular care.
Take the next step:
To learn more about the DSD program at C.S. Mott Children’s Hospital, or to schedule an appointment, call 734-232-0436.