SPRING (Specialized Program that Respects Individuals and Nurtures Growth)

The SPRING (Specialized Program that Respects Individuals and Nurtures Growth) team consists of clinical medical social work, pediatric psychology, urology, endocrinology, gynecology, and genetics. These teams work closely with families throughout the development of the child to provide support and education and answer questions to help individuals and families make informed decisions about their care.

What Are Differences of Sex Development (DSD)?

Differences of Sex Development, or DSD, are conditions in which a child’s genital appearance, gonads (e.g. ovaries, testes), and/or chromosomes (genetic material) may be atypical – potentially leading to differences in appearance at the time of birth or during pubertal development.

Also known as “variations in sex development,” DSD may be referred to by specific diagnostic names. While these conditions are rare (about 1 in 4,500), milder forms occur in about 1 in 200 people. These conditions are often detected prenatally or in infancy, though some do not become evident until puberty.

Meet Our SPRING Team

  • The SPRING team specializes in the care of individuals with DSD conditions, such as genital ambiguity, Androgen Insensitivity Syndrome, Congenital Adrenal Hyperplasia, Gonadal Dysgenesis, Hypospadias, Vaginal Agenesis, Mayer Rokitansky Küster Hauser (MRKH) Syndrome and Testicular Regression.
  • Using a multidisciplinary approach, we provide comprehensive medical and surgical care, including:
    • Establishing an initial diagnosis and discussing an anticipated plan of care.
    • Assisting families in talking with their child and others about the diagnosis.
    • Helping the individual with DSD, at an age-appropriate time, share information with others as needed.
    • Meeting with families throughout the child’s development to provide support and education on long-term expectations, sexual function and fertility, and to promote positive psychosocial adjustment and self-image.
    • Providing long-term follow-up which may begin as counseling during the neonatal period, continue through childhood and adolescence, and through the transition to adult care.
    • Providing psychosocial support and connections with peer support

Meet Our Team

Social Work

  • Provides initial assessments regarding psychological, social and financial needs.
  • Offers psychosocial support to caregivers and the patient regarding diagnosis.
  • Offers psycho-education to develop skills around healthy emotional and sexual well-being.
  • Optimizes psychosocial function and future sexual function.
  • Assists with issues related to body image, information sharing, and relationships.
  • Promotes a young person’s transition to adulthood and encourages their ability to discuss their medical information.

Endocrinology

  • Evaluates and diagnoses any underlying hormone abnormalities.
  • Explains and educates families about the normal and abnormal processes associated with the diagnosis, including possible effects on fertility.
  • Monitors and discuss puberty.
  • Develops a treatment plan, if necessary, to include hormone replacement or substitution to promote growth and puberty.

Urology

  • Evaluates and explains the underlying anatomical condition.
  • Discusses the long-term functional expectations with patients and families and helps determine if surgical intervention is needed.
  • Discusses the type of surgery that might be performed, expected outcomes and recovery.
  • Offers long term follow-up to ensure adequate preparation and transition to adult life.

Psychology

  • Works with individuals and families to promote adaptive adjustment and coping skills to manage diagnosis and medical care.
  • Assists with issues related to body image, information sharing about diagnosis, and relationships.
  • Conducts general assessment of behavioral, social, neurocognitive, and psychological functioning
  • Provides optional in-person or telehealth therapy services outside of clinic to continue support

Gynecology

  • Aids in diagnosis and evaluation of underlying condition.
  • Helps diagnose, manage and treat gynecologic conditions, both medically and surgically as needed.
  • Discusses short and long term reproductive and sexual health concerns.
  • Assists with menstrual suppression, contraception and hormonal replacement therapy.

Genetic and Genomic Medicine

  • Evaluates and diagnose possible underlying genetic causes of condition.
  • Provides guidance to families and medical team regarding genetic testing options to further support or confirm a diagnosis
  • Considers other medical issues that may arise from a genetic cause.
  • Provides information about possible etiology of condition, inheritance of condition, and recurrence risk to family members

Conditions We Treat

  • Micropenis
  • Müllerian agenesis
  • Gonadal dysgenesis
  • Ovotesticular DSD
  • Partial androgen insensitivity syndrome (PAIS)
  • Persistent Müllerian duct syndrome
  • Sex chromosome mosaicism (mixed gonadal dysgenesis 45X, 46XY)
  • Swyer syndrome (46,XY gonadal dysgenesis)
  • Testosterone biosynthesis defects
  • Vaginal agenesis

Resources for Families

Access national resources below.

  • Accord Alliance – Provides resources and information for health care providers, patients and families, other stakeholder communities, and the general public.
  • Beautiful You MRKH Foundation – Provides education and support for those affected by Mayer-Rokitansky-Küster-Hauser syndrome (MRKH) and advocates to expand knowledge about MRKH.
  • CARES Foundation, Inc.- Provides education and research for Congenital Adrenal Hyperplasia while providing the resources and the latest information available for managing life with CAH.
  • DSD Diagnosis Disclosure - Provides tips on how to talk to your child about their DSD diagnosis and explains why this disclosure is so important.
  • DSDFamilies and DSDTeens – United Kingdom-based websites providing support to families and teenagers who are diagnosed with DSD.
  • DSD Guidelines - Provides information for parents and their children with DSDs.
  • Differences of Sex Development-Translational Research Network -Our clinic is part of a collaborative network on hospitals who specialize in interdisciplinary care for these conditions with the goal of continuing to improve medical and psychosocial care and outcomes for patients and families.
  • Hypospadias and Epispadias Association - Gives parents the information and education needed to make informed decisions about their child's care.
  • InterConnect (formerly Androgen Insensitivity Syndrome and other Disorders of Sex Development Support Group (AIS-DSD) - Provides information and support on Androgen Insensitivity Syndrome (AIS) and similar conditions. regarding DSDs and their families.
  • MRKH Organization - Offers support for women with Vaginal Agenesis through linkage with support and general information.