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There are many ways you can help children and their families get the care they need.
Unlike most medical conditions in which we seek treatment immediately after diagnosis, with a vaginal agenesis we typically do not intervene immediately unless there is pain, or a specific medical reason to proceed. It's entirely up to your daughter to decide when and if she is ready for treatment. We believe she needs time to understand her condition and grieve the emotional disappointment of not having a complete reproductive system. We have the expertise to help her cope and deal with sensitive issues surrounding this diagnosis. She may opt to wait or do nothing. If she plans to have sexual intercourse now or in the future, she may decide to create a vagina. When the time is right, we will support her decision, offer treatment options and expect her to be actively involved in the process.
Creating a vagina
Many girls with vaginal agenesis decide to create a vagina during their teenage years.
Vaginal agenesis treatment at Boston Children's Hospital falls under the guidance and expert care of the staff of the Center for Congenital Reproductive Anomalies.
Support and Resource
There are potentially strong psychological effects of having a vaginal agenesis. Issues of sexuality, sex, fertility and body image can be a difficult adjustment for both you and your daughter. The Center for Congenital Anomalies of the Reproductive Tract have mental health professionals specialized in vaginal agenesis.
Having a team of mental health professionals and nurse educators that specialize in caring for young women with vaginal agenesis makes a tremendous difference in what we can offer in the way of support. The team assists young women to develop coping strategies for patients and parents, rather than having the patient waste their time educating the mental health professional on their condition.
For parents and guardians
Vaginal agenesis can be a difficult condition to be diagnosed with, and as a parent or guardian, you want to be able to discuss such a challenging issue with your daughter, as she may be embarrassed to talk about it with anybody else. The Center for Young Women's Health has some important information and resources to help educate yourself on vaginal agenesis so you can provide educated, as well as caring support. Learn some important information about vaginal agenesis, and some coping strategies for you and your child at the Center for Young Women's Health.
Patient education: From the office visit to pre-op to the recovery room, our nurses will be on hand to walk you through your child's treatment and help answer any questions you may have— How long will I be separated from my child during hospitalization? What will treatment be like? They will also reach out to you by phone, continuing the care and support you received while at Children's.
Parent to parent: Want to talk with someone whose child has been treated for vaginal agenesis? We can often put you in touch with other families who have been through similar experiences and can share with you their experience at Children's.
Faith-based support: If you are in need of spiritual support, we will help connect you with the Children's chaplaincy. Our program includes nearly a dozen clergy representing Episcopal, Jewish, Lutheran, Muslim, Roman Catholic, Unitarian and United Church of Christ traditions who will listen to you, pray with you and help you observe your own faith practices during your hospital experience.
Social work: Our clinical social workers have helped many other families in your situation. Your social worker can offer counseling and assistance with issues such as coping with your child's diagnosis, stresses relating to coping with illness and dealing with financial difficulties.
Visit our For Patients and Families page for all you need to know about:
We are grateful to have been ranked #1 on U.S. News & World Report's list of the best children's hospitals in the nation for the third year in a row, an honor we could not have achieved without the patients and families who inspire us to do our very best for them. Thanks to you, Boston Children's is a place where we can write the greatest children's stories ever told.”