Accord Alliance Blog
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At Northshore-LIJ and The Steven and Alexandra Cohen Children’s Medical Center of New York, on Long Island, we have a dedicated Disorders of Sex Development (DSD) Program. Our team includes an endocrinologist, two urologists, a pediatric general surgeon, a geneticist, a psychiatrist, two social workers, and myself, a pediatric gynecologist.
A gynecologist who specializes in pediatrics is an essential component of the multi-disciplinary DSD team. Individuals who are born with a DSD and are sex-assigned as female deserve a gynecologist who is sensitive to the unique circumstances of these patients. A pediatric gynecologist has a complete understanding of the anatomical and psychosocial complexities of patients with DSD and therefore has the expertise to be able to address the needs of these children as they transition from infancy to childhood, childhood to adolescence, and adolescence into adulthood. A pediatric gynecologist has the appropriate perspective on how to guide these children and their parents through the stages of a girl’s life, particularly with respect to how her disorder might affect her pubertal development, future sexual functioning, fertility, reproduction, and sense of self.
Pediatric gynecologists are surgeons, but we also offer non-surgical interventions to our patients. For example, if a girl is born with vaginal agenesis (where the vagina has not formed in the normal fashion, perhaps because the girl has MRKH, AIS, or a cloacal malformation), a neovagina can be created with mechanical dilation or with a surgical graft. Regardless of the approach employed, such girls should be treated by a gynecologist with expertise in vaginal reconstruction. A pediatric gynecologist is the best person to counsel these girls because she can provide the most comprehensive overview of the short-term and long-term risks and benefits of mechanical dilation versus surgical intervention.
In terms of treatment, we have a dilation program where patient technique and progress are closely monitored. When surgery is indicated, we offer a minimally invasive approach to the creation of a neovagina using the Vecchietti technique. Depending on the individual needs of the patient, graft vaginoplasty (building a vagina using tissue from other parts of the body) may be more appropriate. Regardless of whether we recommend conservative, non-surgical management, or a surgical intervention, in our program each patient is treated individually and is carefully followed to ensure long-term success. Even after treatment is anatomically successful, we continue to provide medical and social services to promote a smooth transition from medical care to adequate sexual functioning and social well-being.
Tracy Schachter, one of the social workers on our team, has previously written about how our team focuses on the whole person. I would just reiterate that: The primary focus of our team is to provide comprehensive care to our patients with particular attention to their medical condition; while at the same time optimizing their psychosocial well-being. When we offer surgical intervention, we do so to maximize anatomical functioning. We treat each case individually and make recommendations that also consider genetics, medical history, psychosocial needs, and reproductive potential within the context of family values, religion, and culture. Our ultimate goal is to create a sensitive balance of autonomy for the patient with respect to cosmetic and functional repair.
We asked HEA treasurer Jim Lake to provide this report on the 2011 meeting. The photo to the left was taken at that meeting, and Jim is seen second from left.
For its 2011 meeting, the Hypospadias and Epispadias Association (HEA) met in October in Schaumburg, a suburb of Chicago. It was my honor to act as local arrangements coordinator. We were particularly excited to feature a DSD training day for local social service agencies on Friday of our conference weekend. Participants from the Lake County Health Department (where I am employed) and other local service providers earned 5.5 Continuing Education Credits.
Pediatric psychologist David Sandberg of Accord Alliance and the University of Michigan was one of the featured presenters for that day, providing the basics on DSD care, and own vice president Tiger Devore did a terrific job bringing together his professional experience as a psychologist with his personal experience as a man born with hypospadias. We had about 50 health providers come, and they were joined by members of HEA, bringing Friday’s attendance to about 80 people, really a great size for this kind of educational interaction. Health service attendees rated the experience very highly.
The second and third days included many wonderful workshops and speakers. Dr. Bill Kennedy, Associate Professor of Urology at Stanford University, who has kindly joined us for many years, again came to educate and support parents of affected children and affected adults. As always, Dr. Kennedy patiently answered our many questions about various treatment options and the alternatives available. Another long-time clinician-supporter, Barbara Neilson (the lead social worker on the DSD team of Sick Kid’s Toronto), also attended and provided us that critical whole-life perspective. HEA's Executive Director Billy Deegan facilitated discussions on addiction management, a challenge faced by a number of our members. That’s just a small sample of two action-packed days. You can read more and see more pictures in our Winter 2011 newsletter. (If you click here, it opens as a PDF.)
- Keeping an Eye on the Whole Person at Long Island Jewish (LIJ)
- Much Good News from the 2011 AIS-DSD Support Group Meeting
- Progress at Rush University Medical Center (Chicago)
- Team Building at the University of Michigan
- Benefitting from a Genetic Counselor: The UCLA Experience
- SUCCEED Team in Oklahoma
- Quality Care Indicators for DSD Clinics
- Mainstream stories of women and men with DSD
- Outreach to medical schools
- Save the date for this year's HEA conference!
- New Article on Developing Multidisciplinary Teams
- Summary: Improving Collaboration and Communication in DSD Care Meeting in OKC
- Your Child Resources and Links
- New Support Groups Formed at LIJ/Cohen Medical Center
- Pediatric Gynecology as a Critical Component of Surgical and Non-Surgical DSD Care
- Report from the 2011 Hypospadias and Epispadias Meeting