I would really like to hear from other people who know about translocation and what it means for individuals. I have asked the Down's Syndrome Association in the past and they have not been able to help. I am just intrigued to know really if there are any key facts that I should be aware of. If anyone has any info or can point me in the right direction that would be great.
Translocation Down's syndrome ( TDS ) is hereditary so if your child has TDS then you probably need to consider getting you or your parent tested as there is the increased possibility of you having another child with Down's syndrome.( DS )
If your child has TDS it doesn't mean that they will be any different to a child that has regular DS, its only the heriditary factor .
A child with TDS doesn't need to be treated any different to a child that has regular DS
Not sure if that helps at all but it isn't anything to worry about unless you are considering having more children and only then it means you are more at risk of having another child with DS but it doesn't mean you will definitely have a child with DS
It is actually incorrect to say that Translocation Down's Syndrome IS hereditary. It is the only type of Down's syndrome that CAN be hereditary. Only about 3 percent (varies from 2 to 4 in individual studies) of diagnosed cases of DS are this type, and approximately two thirds of these occur randomly during fertilization. In the remaining third, one of the parents has a balanced translocation or in other words has one of her/his two chromosome 21s "stuck" on another chromosome and obviously in this case there is an increased "risk" for any future children to have Down's. After a baby is diagnosed with translocation DS parents are usually routinely tested to see if either has a balanced translocation.
What comes to any possible differences between "standard" DS and translocation, as far as I'm aware there are no, or very few, studies on the subject. Probably due to the small number of persons with translocation DS.
As a mom of a 5 year old princess with translocation 21;21, I would be inclined to say there is practically no difference. My daughter does have most features, as well as some medical problems associated with Down's (including AVSD that was succesfully repaired when she was little). She is not particularly high functioning, I would say pretty average in most areas compared to other children with DS I know. So I fully agree with what Hannahsmom already said.
Let me know if you'd like to get in touch. There is also a Yahoo group for translocation Down's syndrome.