May 2018 Moms

Triple X syndrome

Found out through genetic testing that our 4th bundle is a sweet baby girl! Also found out that she has XXX syndrome, triple x syndrome. Is anyone familiar with this or have any info? My doctor has never had a diagnosed case in his 25 years. I have googled and will be seeing a geneticist, but just curious if while I wait for answers, if anyone has any first had experience. 


Thank you

Re: Triple X syndrome

  • No experience, but I hope you get more info soon!
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  • First congrats on a girl! Hopefully a geneticist will have some helpful info. From what I know about it (I work with individuals with disabilities) but usually a lot will just depend on your little girl and time will give the most answers. I know that's not very helpful and I hope that nothing serious comes of it. But two people with the same diagnosis can have very different outcomes in life. But talk to the doctor and get some names of doctors you might need to talk to so it's as easy as possible after she's born. 
  • Trisomy  X is generally a mild condition. Since girls already have two copies of the same sex chromosome, our cells tend to only pay attention to one at a time anyway, so adding a third doesn't really affect a person too much. It's interesting because most of the time that a child inherits a third chromosome, the repercussions are wide spread and obvious. But most people with trisomy X never even get diagnosed!

    Physically, she'll be taller than you'd expect. She might have those cute, slightly wide set eyes, or a bit of epicanthic fold (skin fold) at the corners which I personally find quite adorable. But none of the physical features are all that noticeable.
    Intellectually she will take more time to learn language skills, but if you start her early with preschool at home, read and talk to her a lot at an early age, keep up with interventions/therapists/tutors throughout school, then she probably won't have any problems.
    You might want to read up on coping skills and preventative measures for young kids prone to ADHD and anxiety though.
  • Hopefully everything just works out for the best and she has none to mild symptoms that like @P. S. Goblet said without the test probably wouldn't even know it was there. 
  • I don't have personal experience, but do recall when we were talking about potential causes of our increased NT measurement, Triple X Syndrome was one the genetic counselor mentioned as being not severe, but just useful to test for because it could provide an explanation for the increased NT and then we don't need to worry as much about the really worrisome genetic disorders.

    Are you meeting with a genetic counselor as well as a geneticist? We met with one and I found her to be soooo helpful, actually much better than the doctors because she had more time to spend with us and the attitude and approach is a little different.

    Good luck and congrats on your girl!

  • @thunderberry thank you for your response! We have an appt next week for an ultrasound with a high risk doc and then a genetic counselor in a few weeks. They don't seem overly stressed about getting us in right away, which is bith a blessing and a curse I guess- because i want answers but it's not as scary as some other genetic abnormalities . 
  • @theletlers thank you for your response and well wishes! ❤️
  • I don’t have anything to add, but just wanted to say good luck and keep us posted! 
  • @Ceridwen77 thank you!! I will definitely update after my appt next week.
  • Congrats on your baby girl :) 

    A friends daughter was diagnosed this but it wasn’t until birth that they noticed anything “different” she was born early-which was just her circumstance, unrelated to having an extra chromosome. Like pp said, she does have wide set eyes (adorable!) she is a little smaller for her age (3) and has taken longer to hit traditional milestones but she is healthy, happy baby girl! 
    Hope finding out more stories puts you at ease and I’m sorry that you have any worries at all! 
  • @mamabird515 thank you so much! We go to see he geneticist tomorrow, so that will help a lot of my fears. I love hearing stories first hand though- so much better than just a doctors point of view which is so general. Thank you for your feedback! It’s much appreciated!!! ❤️ 
  • @disney7278 good luck at your appointment!
  • thinking of you! good luck @disney7278!!
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