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Translocation Downs. Trying to find other parents with a "balanced translocation".

post #1 of 12
Thread Starter 

I have a genetic abnormality called a translocation. It affects my chromosomes 21 and 14 and is asymptomatic but causes me to be a "carrier" for Downs Syndrome. At 26 years old, I have a 30% chance of having a child with Downs Syndrome.

 

http://en.wikipedia.org/wiki/Chromosomal_translocation

 

My father also has the translocation and passed it on to my brother and I. My brother and his wife have had 2 children with Downs Syndrome, the first was born when they were in their early 20s and placed in adoption. We had no incidence of Downs Syndrome prior to this in our family. When my nephew was also born with Downs Syndrome, everyone in the family got genetic testing.

 

2 months ago, I had a healthy baby girl who does not have Downs and does not possess this translocation either. I do want to have more children and I know I will have to face this again in the future. I am interested in finding other people who have experience with this (and all the prenatal testing that goes along with it). Are there other people out there with this in their families?


Edited by MamaHavoc - 11/27/11 at 8:10pm
post #2 of 12

Sorry I can't be of any help with your specific issue.  I have a daughter with Down Syndrome, though, and I just wanted to say that you might want to choose your words more carefully when addressing parents of children with DS.  I am not quick to take offense, but I have to say that your post rubbed me the wrong way.

post #3 of 12
Thread Starter 

Hmm. Where would you suggest I post about this issue? This is a very lonely situation as it is an uncommon problem and I am merely trying to find other people to talk to about it. Is it a comfort for you to talk to other parents with DS children? Well, it would be comforting to me in a similar fashion. Remember, I could very easily be in your shoes with my next child.


Edited by MamaHavoc - 11/27/11 at 8:20pm
post #4 of 12
Thread Starter 

I also went through all the forums and thought this was the only one that was related. If there is a more appropriate forum I would love to know. I thought about "Finding Your Tribe" but that seems to be location only.

post #5 of 12
I'm forum crashing since I don't have a special needs child, but I think it was the "very lucky" comment that she found offensive. I can see how a parent with a child that has Down Syndrome might find that offensive, since they feel lucky to have their child.
post #6 of 12
Thread Starter 

I see. And, even though I feel very lucky to have my child as well,  I made changes to the original post so as not to offend anyone. I would appreciate any further posts on this thread to be related to balanced translocation.

post #7 of 12
Thread Starter 

I think I posted this in the wrong forum since I do not have a special needs child currently. I will try again in "Finding Your Tribe". It certainly was not my intention to offend anyone, I was only trying to tell my story. If anyone has any information on balanced translocation or knows of any relevent support groups, please PM me. Thanks!

post #8 of 12
I don't comment a whole lot on this forum, so I hope it is ok to give my opinion. I think it is appropriate to ask here & the most likely place that I know of at MDC to find an answer. I'm sure you didn't mean to offend anyone. Personally, I try to only take offense if someone's intentions are negative. However, as an aunt of a child with DS, it is a good lesson to learn that as parents of kids with DS, many of us consider ourselves lucky & blessed too. There are also certain terminologies to learn such as saying "people with DS", not "DS person".

As for your question, I would ask at either of the following 2 boards as they both have a much larger number of members who have kids with DS, & I'm sure there are some who have kids with translocation.

http://community.babycenter.com/groups/a315/down_syndrome?

http://www.downsyn.com/phpbb2/index.php
post #9 of 12
Thread Starter 

Thank you! That post was very helpful. I will try those forums.

post #10 of 12

You might also post over on Babycenter in a group called Unique Chromosomes. There are parents there dealing with balanced translocation. Balanced Translocation is actually pretty common. It is one of the main causes of multiple pregnancy losses. Especially early. Just be sensitive to the fact that most people that find themselves on that board did so after their child was born with an unbalanced translocation, and they found out about their condition after the fact. 

I

post #11 of 12
Thread Starter 

I just went there and THANK YOU for the advice! One of the first posts I saw was about balanced translocation. That is exactly what I was looking for. Thanks again!!

post #12 of 12
You might also try 23andme.com. You do not have to pay for dna testing in order to join and use the forums. It is a good resource for genetic information.
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