Accord Alliance Blog

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.)

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For this post, we asked Tracy Schachter, LMSW, to tell Accord Alliance's readers about the DSD team at Long Island Jewish Hospital/Steven Alexandra Cohen's Children Medical Center. Tracy describes here the make-up of the team, the team's approach, and her role as the social worker. 

I'm excited to have recently become the social worker on the DSD team at Long Island Jewish Hospital/Steven Alexandra Cohen's Children's Medical Center. Our active and well-integrated DSD team is expertly coordinated by Heather Appelbaum, MD, Program Director/Pediatric and Adolescent Gynecology. Our team includes: Phyllis Speiser, MD, Pediatric Endocrinology; Jordan Gitlin, MD, Pediatric Urology; Lane Parlmer, MD, Pediatric Urology; Nelson Rosen, MD, Pediatric Surgery; Joyce Fox, MD, Pediatric Genetics; Carmel Foley, MD, Pediatric Psychiatry; Carol Adelman, DSW, Social Work NICU; and me, Tracy Schachter, LMSW, Social Work Gynecology.

It is great to work with physicians and nurses who value the social work perspective – a perspective that takes into consideration what patients and families need before and after they walk through the door. We are concerned about how patients are doing as individuals and how they are doing within relationships and within their social networks. We are dealing with uncertainty, anxiety, shame, grief, love, and growth.

As the social worker on the team, my role is to conduct psychosocial assessments that encompass religion, ethnicity, and environment. I work on developing a rapport with families that will ultimately lead to sharing their confusion and concerns. With parents of small children, I try to help address anxieties about diagnoses, interventions, and prognoses. With affected teens, I do a lot of active listening and offering support, with a focus on body image and providing the coping tools necessary for them to feel good about themselves. When our patients are young adults, decision-making is really in their hands. I try to offer direct support; I find out where they are in terms of their physical and mental growth, and provide them assistance with planning for today and for the future.

It is especially satisfying to work with a team that recognizes that sometimes an immediate surgical "fix" is not always the best long-term option. Our team takes seriously options like pressure dilation for vaginal expansion, a non-surgical option. We work to try and make sure patients leave our clinic feeling good about themselves, their bodies, and their lives.

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