When we took our daughter to the Cardiologist, as part of her diagnostic work up, he indicated to us that the aortic disection was more of an issue if the person had coarctation of the aorta, which you are either born with or without. Our daughter has a bicuspid aortic valve but no coarctation and her heart is functioning normally. He indicated to us that she should be just fine but to not become a football player or wrestler! I sincerely hope all is well with your daughter and happy holidays!

I am 28 and just recently found out, I to would like to know more on this,,,, I had a CT done, and it came back normal, but is it something that I constantly need to be worried about. What other test have they done on your daughter? I have not much info on this.

Unfortunately I do not have a lot of information on this. My daughter was just diagnosed in October and we've been to the endocrinologist and gastroenterologist. We still need to see the cardiologist. She had an echo-cardiogram in October when we found out and they said everything looked fine. But I don't think I'll know anything further until her doctor's appointment with the cardiologist. I do know that she will probably have to have her heart monitored on a yearly basis throughout her life. Wish I had more information for you!

Thanks so much for the info. I would like to keep in touch with you if you don't mind.... maybe we can figure somethings out together. Let me know what you find out from the cardiologist., and I will do the same.
Thanks!

My daughter is 3 and had her initial echo 6months ago. All was normal, but we were told she need future echos annually.

The facts are this:
Aortic dissection can occur without other heart defects present.
Aortic dissection is more likely to occur during pregnancy or birth or after as being pregnant and the strain of birth puts a great deal of pressure on the aorta, causing them to dialate.
This is why if a TS woman is pregnant she must have a through cardio work up before pregnancy to assert if she is suitable for prengnacy, and weekly echocardiogrms throughout pregnancy to show her personal effect from pregnancy.
It is also wise to consider a c-section.

TS women are at higher risk for aortic disection without pregnancy too.
There is better info on this at the tssus site, referenceing medical studies and case studies.

The "norm" for the arota in children is calculated from their size at the time of echocardiogram or cardiothorassic MRI/MRA.
Unfortunately the norm for adults with TS is often taken from the national average norm....which is not helpful to TS women.

The reality should be that a TS woman's height and diameter of her rib cage, should be taken into account to calcualte what her personal "norm" or range is for her aorta.

Personally I'm 5'7 and with a large rib cagge, so my aorta "Norm" or range is higher than another TS woman who may be petite and without the larger rib cage.
It is damned near impossible to find a cardiologist who understands this stuff, which is stupid I'm no Dr, not even a uni degree and I get it.
This is because I know about me very well.

And that ladies (mothers and TS women) is the key, it's about knowing your individual case and researching up the ying yang to be your own advocate.
while these chat groups are terribly helpful it is the case that the majority of us are ill-informed due to the lack of understanding of the specturms of TS.

Also there are other forms of dwarfism from which the norm was borrowed and applied to TS women, this again is not accurate for any TS woman.

Further, pregnancy related aortic dialation is not relevant to your child, but may well be in her adulthood, so just retain that it may become relvant where it presently is not.
It is relevant to me as I only learned about my TS following infertiliy work ups, I have since had a baby.

Additionally each pregnancy weither full term or not increases the risks of aortic dissection in the TS patient.

As far as dissection outwith pregnancy, yes the heart defects being present may increase the risk of the aortic wall being weaker, and yes this may need addressing.
But, also without the defects it is still a risk.

Aortic dissection can occur within the rest of the population too.

There are aortic dissection and ruptures.

There are organisatins that exsist who group together for patients with increase aortic rupture risks.
I can't remember the name of it, if i do i'll return.