#1 Ranked Children’s Hospital by U.S. News & World Report
MyPatients provides referring primary care providers with secure access to their patients’ information.
Boston Children's has launched the world's 1st program dedicated to offering hand transplants to children who qualify.
Innovation insider is a semi-monthly e-newsletter analyzes innovations at Boston Children’s, other academic medical centers and from industry.
Read the latest blog by a Boston Children's doctor, clinician or staff member.
There are many ways you can help children and their families get the care they need.
We understand that you will likely want to learn more about vaginal agenesis in order to seek the best medical care for your daughter. The Gynecology team here at Boston Children’s Hospital has the resources and expertise to provide the medical care and emotional support that your daughter and family will need to cope with this condition.
What is vaginal agenesis?
Vaginal agenesis, or absence of the vagina, is a congenital disorder of the female reproductive tract. It affects approximately 1 in every 5,000 female infants. The cause of vaginal agenesis is unknown. The most common form of vaginal agenesis is Mayer-von Rokitansky–Küster-Hauser’s syndrome (MRKH), in which the vagina did not grow during embryologic development. It is important to know that all women with MRKH do have functional ovaries, have normal development of breasts and pubic hair and make normal female hormones.
There are many variations to MRKH
As described above, women with vaginal agenesis may or may not have uterine structures. For management, the goal would be to create a vagina for sexual activity and then the option for reproduction would involve the utilization of assisted reproductive technologies using her eggs and her partner’s sperm and placing them within a gestational carrier, also known as a surrogate mother.
What causes vaginal agenesis?
The exact cause of this genetic abnormality is unknown, but many different congenital conditions are known to lead to vaginal agenesis.
Is vaginal agenesis inheritable?
There is little evidence that agenesis of the lower vagina runs in families. There are no known risk factors for vaginal agenesis.
How will vaginal agenesis impact my daughter's sexual life or fertility?
What are the symptoms of vaginal agenesis?
Q: Is my daughter really a female?
A: Even if your daughter has MKRH, and lacks a vagina, she is still genetically female with two X- chromosomes just like any other girl. Her ovaries are not affected so her body will make normal hormones and she will go through puberty along with other young women her age.
Q: Can my daughter still have her own genetic children if she doesn’t have a vagina?
A: Yes. Most young women will need to use a gestational carrier’s (surrogate mother) uterus to carry and deliver a baby, but use their own egg(s) and their partner’s sperm to conceive the baby.
Q: Will my daughter be involved in the decision process to have treatment?
A: Yes! We believe your daughter should be actively involved in her treatment plan. She should be the one to decide when and what type of treatment she would like or no treatment at all.
After your daughter is diagnosed with vaginal agenesis, it is normal to feel worried and perhaps overwhelmed with a lot of new information.
Lots of parents find it helpful to jot down questions as they arise- that way, when you talk to your daughter’s medical team you can be sure that all of your questions and concerns are addressed. If your daughter is old enough, you may want to suggest that she writes down any questions as well.
Here are some questions to get you started:
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.”