hi ive just been doing some reading that gave me a thought and im wondering is anyone knows.

has there been any cases of TOF children passing on the TOF to their own children or is it completely isolated?

i know, im addicted to this website i think, haha.

ive never even thought about it being passed from hugh to his children before and then i read something about it, and just wondered if anyone actually knew any cases of this happening?

cheers jayne, ill have a good search too, im off in a sec too, hugh is due to be woke up. ill speak to you later.

wow thanks jayne that was a good search you had then.

You can ask to be referred by your GP to a geneticist.  We did and found it really helpful.  I probably can’t explain it very well but here goes - I’ll try.  In summary, they told us that in a simple Tof/OA with no other problems such as CHARGE or VACTERYL etc, they do not know which gene causes the problem and so can not test for what went wrong.  But it is very unlikely to be passed on.  If there are further complications, I think that they can genetically test the parents and the Tof child to see if it can be passed on.  We were told when Freya is thinking of having a family (my husband Dom says she can’t have a boyfriend till she is 30!!) then she should seek genetic counselling as medical science may know more about what caused it.  But basically, she would be very unlucky to have a Tof offspring.  However, the odds would be increased if she had a child with another Tof partner.  Hope that helps. Rachael

aww thank you for the post. were stillin waiting for our appointment to come through from the genetist, and seein as hugh is over 2years old now, it is kind of taking the mick how long it is taking. so it will be interesting when we do get to see them.

maybe so, it wasnt the hospital who referred us, it was hugo’s community peadriatricien, (cant spell at th moment, but hopefully u know what i mean)

Don’t think it matters whether little un is suspected to be isolated tof/oa.  That is what they thought with Freya but you can still ask to be referred.  I just asked my GP.  Rachael

i would imagaine so then if that is whats written.

its interestin inst it. shame we cant find some definate statistics on it.

from what Ive learnt its more to do with children that have more than tof/oa that have a genetic issue that they are looking for
eg in our case treacher Colins with Tof/Oa
so if you have something ontop of Tof/Oa then get intouch and see if it is can be passed on otherwise its likely to to just be a genectic thing that happened and probably wont happen again

oh right, thats good info to know then, thank you