i am, (well, WE are, actually) in a state of limbo right now when it comes to having more kids. the list of what we know is short: we want more. but hey, ya gotta start somewhere, right??
because T & i are both carriers of the gene mutation for SMA, any child that we conceive will have a 1 in 4 chance of also being affected with SMA. and here is the tricky part: there is no way to predict how severe of a case any future child may have, if they have SMA at all. we can do testing but even if we were to find out that a future child has the genetic mutation, there's no way we can know if it's a more moderate to mild case like ruby's (or even milder, though that would be unlikely) or if that child would pass away within a month from their birth. i have read that the majority of children born with SMA are diagnosed with the more severe type 1 diagnosis. we are fortunate ruby is as strong as she is.
however, we do have options.
*we could choose to get pregnant naturally & not have any testing done.
*we could choose to get pregnant naturally & have testing done at 10 weeks, finding out the results a few weeks after the test is done. at which point, if the baby was positive for SMA, we could choose to continue the pregnancy or we could choose to end it.
*we could adopt.
*we could get a sperm or egg donor. (but SMA isn't tested in donors so technically, we could still end up with a donor who is a carrier. which would really be crap.)
*we could do IVF with preimplantation genetic testing & only implant the non-effected embryos.
so, like i said, we have options. none of them sit great with me, to be honest. they all have their cons & pros. i don't feel pulled in one way or another. i feel like i can go back and forth on what i think is best every other day.
we have decided our first step is to talk with a geneticist that dr schroth gave us the contact information for. hopefully he can answer some of our questions and help us come to a decision we feel comfortable with.
because this is a topic that is so personal. in terms of the decision to be made, i don't know how much detail i'll go into on here about it. maybe i will, but i won't know how i feel about it all until we are in any given situation. but i wanted to share where we are with it right now. i know it will all work out one way or another but it is a lot to think about, given all we've just gone through with ruby's diagnosis. it's just one more thing now that won't be easy. but it will be worth it. that much we know.