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There are many ways you can help children and their families get the care they need.
At Boston Children’s Hospital, we understand that a diagnosis of mixed gonadal dysgensis (MGD) comes with a lot of questions and uncertainty about your child’s sexuality and health. We’ve provided some answers to those questions here, and when you meet with our team of experts, they’ll be able to explain your child’s condition and options in more detail.
What is MGD?
Remember that seeking out information is not only necessary but also empowering—it allows you to partner with your child’s care providers to make the best decisions for your child and your family.
Are there any other medical conditions associated with MGD I should be concerned about?
MGD is usually an isolated issue that doesn’t involve a child’s other organ systems. In very rare cases, children with MGD have an increased risk for certain medical conditions, such as:
What causes mixed gonadal dysgenesis (MGD)?
In a normal pattern of sexual development, chromosomes, gonads, and hormones function like this:
Chromosomes and Gonads
Sexual development in children with MGD
MGD in the child might look like this:
What are the symptoms of MGD?
Q: After sex assignment, can a child with MGD lead a fairly normal life as a boy or girl?
A: Yes. Using surgery to correct malformed genitalia will allow your child to lead a fairly normal life as a boy or a girl. However, he or she may look and feel slightly different from the average child.
Q: Can my child have children?
A: No matter which gender they’re raised in, children with MGD are infertile. Those reared as female are infertile because they don’t have an ovary. Males with MGD are infertile because they have an undescended testis, which is dysgenetic (abnormal). While it’s possible that some people with MGD might be able to have children with intensive assisted reproductive techniques, it is unknown.
Q: Will a child be able to function sexually?
A: Yes. With the proper surgical correction, children ought to be able to function sexually in a reasonably normal way.
Q: Are there any complications as children with MGD reach their teen years and go through puberty?
A: As children with MGD grow older, doctors want to make sure that their hormone production is adequate enough to enter puberty. A child reared as female will have to take medications containing the female hormone estrogen in order to enter puberty and develop normally. Later on in life, a reassessment of her functioning will be done. This evaluation will be done under anesthesia. As for a male child, the doctors will follow his blood testosterone level to make sure that it remains adequate.
Q: How can I help my child cope with his condition?
A: Support from family and health care providers go a long way in helping your child build healthy self-esteem. Making sure that your child receives psychological counseling is also an important part in maintaining his emotional and mental health. Children’s offers a variety of support services to parents and children.
If you are having trouble coping with your child’s MGD, we offer many support services that can help you to develop parenting strategies and feel less anxious.
Q: Will my child need hormone replacement medication? Why?
A: It depends on the gender of the child. A male child with a testis that’s functioning well enough to produce male hormones won’t need hormonal therapy. Children reared as females would need hormonal therapy because they don’t have a normal ovary.
Q: Should my child get corrective genital surgery?
A: After your child is diagnosed with MGD, you should have a discussion with your family and your child’s doctor about sex assignment. Deciding on a sex assignment depends on the anatomic findings, so it will vary from child to child.
Corrective surgery is needed most cases because the two gonads do not match up. If you raise the child a male, the female ductal structures on the opposite side would need to be removed. If you raise the child as a female, because the phallus is small and the likelihood is that she would function better as a female, then the testis would need to be removed.
You will probably have a lot of questions on your mind before meeting with your child’s doctor. At the appointment, it can be easy to be overwhelmed with information and forget the questions you wanted to ask.
A lot of parents find it helpful to jot down questions beforehand. That way, when you talk to your child’s clinician, you can be sure that all your concerns are addressed. Remember that physicians are open to learning from families too. Attend conferences, read up on updated materials and don’t be afraid to share what you have learned.
Some questions you might ask include:
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.”