Special Needs
JackiePedersen
member
TTC knowing you could pass on a genetic disorder
JackiePedersen
member
Anyone here deal with a genetic disorder in one of their children, and then agonize over whether to TTC another?
I have three children. My second child (oldest son) has a genetic neurological disorder that causes movement issues. He is mentally normally functioning, plays, has friends, likes to sign up for swimming, soccer, etc...
But, he will never be able to keep up with his friends. He wears AFOs on his legs right now, and most likely always will need them. He has primary dystonia, though we don't know which type. We also do not know whether this is something that we passed on to him (and we just never had any symptom manifestation), or whether it was spontaneous mutation.
SO.... We've decided we're ready to TTC our last one, and that will make it four. In the back of my mind, however, I feel guilty, knowing that there's a possibility this child could have what DS has.
I don't and won't know what's in store for DS and his disability until many many years from now. His progression may plateau and he may live life with just a mild, inconvenient disability. Or... his progression may keep going and going, and he could live life with a very difficult disability.
Sigh.
I have three children. My second child (oldest son) has a genetic neurological disorder that causes movement issues. He is mentally normally functioning, plays, has friends, likes to sign up for swimming, soccer, etc...
But, he will never be able to keep up with his friends. He wears AFOs on his legs right now, and most likely always will need them. He has primary dystonia, though we don't know which type. We also do not know whether this is something that we passed on to him (and we just never had any symptom manifestation), or whether it was spontaneous mutation.
SO.... We've decided we're ready to TTC our last one, and that will make it four. In the back of my mind, however, I feel guilty, knowing that there's a possibility this child could have what DS has.
I don't and won't know what's in store for DS and his disability until many many years from now. His progression may plateau and he may live life with just a mild, inconvenient disability. Or... his progression may keep going and going, and he could live life with a very difficult disability.
Sigh.
This discussion has been closed.
Re: TTC knowing you could pass on a genetic disorder
It causes intellectual disability, physical disability, hypertonia, microcephaly, vision loss, hearing loss and seizures.
*checking to see if I can find that reference...**
None of our girls have shown any sign of what he's got. I watched every sniffle and cough they had, like a hawk. I still watch, just in case.
Our situation is different but similar. I have a complex congenital heart defect and as such our children have a 1:10 chance (as opposed to a 1:100 chance in the general population) of having a CHD. We chose to have children knowing this but also knowing that many common CHD's are far less involved and complex than mine, and some are more so and can be lethal.
I think that my DH was far less concerned about this chance because even though I've had 3 open heart surgeries (the last one so that we could TTC) I've been incredibly healthy, shockingly so given my dx. We did do a fetal echo and will do with any subsequent children and be hyper vigilant after birth to make sure nothing is missed. I think knowing the "numbers" and having lived with a CHD myself made the choice easier but not without some breath holding moments. It's also something that we CAN look for, we know what they look like. Like I said your situation is different, you're still looking for the fingerprint so to speak.
If Grant got his duplication by random chance, then we would feel better about trying to conceive.
I feel guilty even though we didn't plan for this, but I take great assurance in knowing that God did! (Even though it is basically 100% that this baby will also have the mito DNA mutations as well... We just don't know how she will be affected.)