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If you have received a prenatal diagnosis of XXYY, we know that you are scared and surprised. You may not have received very accurate or up-to-date information about XXYY, either. Below is a list of commonly asked questions we receive from people who receive a prenatal diagnosis. Please also take a look at the Parent FAQ page for further information. You can also contact us. Those with a prenatal diagnosis receive a priority response.
Is XXYY anything like Down Syndrome?
People typically have 46 chromosomes. Two of them are sex chromosomes. A person with Down Syndrome usually has an extra chromosome 21 (and there are other causes as well). Boys with XXYY have two extra sex chromosomes. In the sense that the Down Syndrome and XXYY are caused by extra chromosomes, we are similar. XXYY is similar to Down Syndrome as well in the fact that there are physical features associated with XXYY, although they are typically not as recognizable as Down Syndrome. Not all boys with XXYY have intellectual disability, however.
What will his life be like?
This is probably the biggest question we are asked by people who receive a prenatal diagnosis. Unfortunately, we cannot answer that question in any definitive way. There are hundreds of thousands of boys and men in the world who should have XXYY, based on the rate of incidence. The XXYY Project knows hundreds of families, not hundreds of thousands.
What we do know is that XXYY has a spectrum of effect similar to autism. We have men who work and have relationships and are living fairly typical lives. But we do also some boys and men who are much more effected, who need community supports.
What is the life expectancy of males with XXYY?
We have no reason to believe right now that XXYY causes a decrease in life expectancy but this has not been studied.
Can I handle this?
Our answer to this question is this: Only you know the answer to this question and it is based on what you were expecting as a parent, how many other children you have and your relationships and support systems. Children can be born typically and still have unexpected issues and disabilities later in their childhood or lives. As a prospective parent, it’s a risk that you take. We all decide if we are able to take on these challenges.
We will tell you that single parents and couples alike have been able to handle this. We will also tell you that we will be here to support you throughout your son’s life. We have already watched many of our boys grow to manhood. Our parents are seasoned and willing to share advice.
Is there any other help out there for us in the future?
The XXYY Project and the organization we operate within, AXYS, are developing clinics for families as well as fostering more research. As time goes on, more and more resources will be available to you that were not available to parents of boys with XXYY a decade or more ago.
Can I join the parent support group now?
The XXYY Project does not enroll expectant parents in our online support group for many reasons. We are more than happy to connect you with other parents to talk this through, however. If you decide to continue your pregnancy, you will be able to join us. Contact us and we will help in any way we can. We are non-judgmental and will give you the information you need.