Cystic fibrosis, if we were both carriers, I'd want screening of embryos in advance. Carriers of things like dwarfism, huntington's or dominant disorders, again I'd likely want screening.
Carrying the BRCA1/2 gene or another disorder the increases likely hood but doesn't guarantee, I probably wouldn't.
We found out I'm a carrier for Spinal Muscular Atrophy right before we lost our insurance. We haven't had a chance to get DH tested, though, and the dr said that unless we're both carriers it's very unlikely (maybe even impossible?) for our child to have it.
I'm honestly not sure what we'll do if DH is a carrier. We both really want children, and DH won't want to adopt.
I was tested before we started TTC for taysachs bc my dad is a carrier. I came back negative, but we were prepared for the next steps if I was positive.
Although I read an article about a woman who was negative and still had a child born with it.
I was tested before we started TTC for taysachs bc my dad is a carrier. I came back negative, but we were prepared for the next steps if I was positive.
Although I read an article about a woman who was negative and still had a child born with it.
Its extremely rare but it can occur from spontaneous chromosomal mutation.
That's a big It Depends. There would be a lot of factors involved, as well as a long chat with a genetic counselor.
But considering that we adopted already, that might be our option to build a family if we had a genetic condition to consider. A CW is considering that, as a matter of fact.
Yes, but probably not the old fashioned way. A lot of genetic testing would be involved and I'd probably do IVF and embryo selection.
I have a friend who did this twice, so their kids wouldn't inherit 2 conditions from their father. It was not cheap.
IMO, the cost would be totally worth it. I mentioned my sisters friend in the other thread who knew she was a cystic fibrosis carrier and got pg anyway. Her son has CF, which has a median survival age of mid 30s and 45% of people with it die before age 18.
I just cannot imagine doing that, knowing there was a chance your child would not have a normal life in length or experience when there is a means of prevention.
I'm actually in this situation. Me and my husband are sickle cell carriers so there's a 1 in 4 chance our child would inherit it. We got pregnant without doing any testing and I ended up losing that baby due to pre term labor at 22 weeks (nothing to do with sickle cell). We are not 100% sure but i'm currently seeing an RE and might do IVF with PGD. It's just extremely expensive.
Ditto those who said it would depend on the specific disorder.
But we've already discussed what we want to do if we have trouble conceiving, and right now we both agree that we'd rather pursue adoption than go to great lengths to keep trying to conceive. Who knows how we'll actually feel if/when we get to that point, though.
Of course it depends on severity though. We are on the fence about having kids or adopting. Being carriers for a genetic condition would tip us to the adoption side.
Post by liveintheville on Jul 9, 2012 19:42:22 GMT -5
Yeah, I'm in the "it depends" camp. I had some blood panel screenings to rule out things like tay-sachs, but our kids have a 12-13% chance of being type 1. We, obviously, took that risk.
Post by saraandmichael on Jul 9, 2012 19:51:02 GMT -5
i am a carrier for a genetic disorder that my youngest son has. it has been a really difficult decision for us to not have any more children.
however, if we did decide we wanted more, i would have pushed my husband hard to do IVF so that only female embryos that are not carriers of the disorder and male embryos that do not have the disorder were implanted.
We have a son with a rare genetic disorder who has special needs. We didn't find out until after he was born, and I should definitely not opened that other thread about termination
We have been told that it was just a fluke and we are at the same risk of having another child with a genetic disorder as the rest of the population. So we are TTC, but I am still terrified!
I have a friend who did this twice, so their kids wouldn't inherit 2 conditions from their father. It was not cheap.
IMO, the cost would be totally worth it. I mentioned my sisters friend in the other thread who knew she was a cystic fibrosis carrier and got pg anyway. Her son has CF, which has a median survival age of mid 30s and 45% of people with it die before age 18.
I just cannot imagine doing that, knowing there was a chance your child would not have a normal life in length or experience when there is a means of prevention.
This is so crazy to me! DD2 tested positive during her newborn screening for CF. The two days we had to wait to see if she had CF or if she was just a carrier were so intense. I can't imagine this chick was all "la-dee-da, maybe I'll have another kid with CF, who knows?"
IMO, the cost would be totally worth it. I mentioned my sisters friend in the other thread who knew she was a cystic fibrosis carrier and got pg anyway. Her son has CF, which has a median survival age of mid 30s and 45% of people with it die before age 18.
I just cannot imagine doing that, knowing there was a chance your child would not have a normal life in length or experience when there is a means of prevention.
This is so crazy to me! DD2 tested positive during her newborn screening for CF. The two days we had to wait to see if she had CF or if she was just a carrier were so intense. I can't imagine this chick was all "la-dee-da, maybe I'll have another kid with CF, who knows?"
Exactly! This is how the conversation went when my sister mentioned it:
Sister: X is pregnant again Me: Oh, did they do IVF this time so they don't have another kid with CF? S: No, they decided to take their chances :-| Me: :-| :-| :-| :-| :-| :-| :-|
This is so crazy to me! DD2 tested positive during her newborn screening for CF. The two days we had to wait to see if she had CF or if she was just a carrier were so intense. I can't imagine this chick was all "la-dee-da, maybe I'll have another kid with CF, who knows?"
Exactly! This is how the conversation went when my sister mentioned it:
Sister: X is pregnant again Me: Oh, did they do IVF this time so they don't have another kid with CF? S: No, they decided to take their chances Me:
I just cannot wrap my brain around that. I was freaking out so bad looking at my little 5 week old baby and imaging all pain she might have to go through. BTW, Google is not your friend in that situation.
Post by Laura Palmer on Jul 9, 2012 20:51:11 GMT -5
No. H and I (partially) won't be having children because our kids are likely to have mental health challenges. Between my depression and OCD and his issues (prefer not to specify) -- no way. We're a hot mess and it'd be cruel for us to bring miniature versions of us into the world. (I half joke)
No. Financially speaking, you would need to have more money in order to make sure they are taken care of in a lifetime, even while your not around anymore. It can be tough on a marriage. DH has a special needs uncle, and it is very tough on the family as it is, since his grandparents are not around to watch him.
Post by indianchica on Jul 9, 2012 20:57:23 GMT -5
No, I would not plan to conceive. I didn't even want to be pregnant the second time around without any of that, so I KNOW I would not have wanted to if we had a higher chance of problems.
My cousin and her husband had twins and it turned out they were both carriers of a rare disease that the twins got. Both died within a day of each other at 6 months After the kids died they figured out what they had (I can't remember the name). They are told that every time they have a child there is like a 75% chance this will happen. HOLY S.
8 years go by and my cousin cautiously says they are pregnant but is very nervous. They did full genetic testing of the embryo and it DID have the disease. They terminated. I do not blame them in the slightest. This is one of those things that makes me want to stab pro-lifers in the eyeballs. They would force my cousin to go through the horror of losing another child under a year old. I cannot fathom making someone go through that.
Exactly! This is how the conversation went when my sister mentioned it:
Sister: X is pregnant again Me: Oh, did they do IVF this time so they don't have another kid with CF? S: No, they decided to take their chances Me:
I just cannot wrap my brain around that. I was freaking out so bad looking at my little 5 week old baby and imaging all pain she might have to go through. BTW, Google is not your friend in that situation.
Count me in this club. In the 3.5 weeks before finding out that I was a CF carrier and the final CVS testing proving that DD was not a carrier or positive for CF (in the interim we obvs found out that DH was a carrier), I cried EVERY SINGLE NIGHT. When we found out we were having a healthy baby girl, I was so happy thinking about the things I'd be able to see her do (get married, have children, grow old).
So yeah, we lucked out with DD and will do IVF with PGD for any future children (likely just one because it's $$$$).
It would depend on the disease and the risk. If it was a recessive disorder like CF and my DH and I were both carriers such that our child would have a 25% chance of being affected, we would either do IVF with PGD or adopt. If it was a situation where our child's chances of having a particular genetic disorder based on family medical history were 1%--so significantly elevated relative to the general population but still ultimately very small--we might conceive anyway.
I left my previous OB after I asked her nurse about CF testing prior to conceiving and was told "we don't usually do that until after you are pregnant." When I responded that I felt that the information was far more useful if learned prior to conceiving, she was like "Does it really matter? It's not like you're going to just not have kids if you are both carriers, is it?" Well, actually...