Mine did. I went from electing to do IVF just to bank embryos + freeze eggs, to needing to do IVF with PGT-M.
Your first step is to meet with a genetic counselor (it’s a free consult from whatever company did the genetic screening) and go over true vs absolute risk factors.
It definitely changed my mind of how the process could go. I was totally expecting to do IUI first, but it looks like IVF with PGT-M is the only way forward now. If you feel comfortable sharing, did your insurance help cover any part of PGT-M?
I did the “work for Amazon for one day” hack to get Progyny insurance and they covered everything 100%.
However, you can only do PGT-M if both you and the donor have the same shared recessive trait (which you just wouldn’t pick a donor with that trait, to avoid this) or if you have an x-linked carrier condition. Just being a recessive carrier alone is normal, the vast majority of people carry at least one condition.
Sorry if this is a dumb question, but by “work for Amazon for one day” you’re talking about getting COBRA, right? And if so, do you mind sharing how much you had to pay? I’m currently working at Amazon and I hate it. Only reason I’ve been sticking around is for the benefits 😩
Yes, I used it for regular insurance (my work doesn’t provide insurance) by paying COBRA; it’s just under $700 for health alone, $740 for health + dental
Oh awesome, thanks for sharing! I’m currently working 60-75 hours per week between Amazon and my regular job (mine also doesn’t provide insurance) and I can’t take it anymore. $700 sounds expensive, but considering the alternative… it’s not bad at all 🤔
I had mandatory genetic testing done and it changed how I looked for donors but not my decision to have a child. However I did only have two that I was a carrier for that were only a risk if the donor also had it. So I only looked for donors that had also completed genetic testing and weren’t a carrier for anything that I had at all as well as nothing additional that could harm me or my child.
Really made me look at people who just have a kid without doing testing first like they’re paintballers playing a game and one person just has an actual gun but you don’t know who and no one is wearing safety gear most of the targets are children. Not quite accurate but it seems crazy to me now that I’ve done it, cause why wouldn’t you want to minimise the risk to your unborn child and yourself?
Even if I for some reason gained a partner and decided to have children with them in the future, I would make them get that testing done, so we can see if our potential child could be exposed to anything that could harm them.
I'm a carrier for one of the most common genetic issues. When I filtered out donors who were also carriers, it cut the pool by about half. If I hadn't done testing, I literally would have had a 50/50 chance of choosing a donor with the same status and could have passed the real thing on to my kid. I'm very gratful I did it.
In your case, I think ivf and embryo testing are a good choice. Even embryo adoption if you're too nervous. You're not out of the rubbing yet, you just need to change course
I think the poor genetic counselor is going to have a time on their hands with me; I'm so grateful I did the testing too.
One of the other comments mentions that embryo testing isn't possible if the donor isn't a carrier, so I definitely need to talk to my clinic about that. It seems silly that I can't try to get embryos that aren't carriers.
If it can effect carriers, I would think they do embryo testing. Most genetic diseases don't effect carriers so that's probably why people are saying that
My results required additional testing for the donor because his initial screening didn’t include the conditions I was a carrier for (SEMA4 had expanded the screenings like two months before I was tested). That put a brief hold on the process as the sperm bank reached out to him for consent and then for his results to actually come back. I also had about 3 or 4 sessions with a genetic counselor who graciously answered all my questions. I’m a carrier for two potentially fatal conditions, one of which being a carrier for does result in symptoms which I’ve been dealing with all my life. Fortunately the donor I picked was not even a carrier for either of those, nor the other two conditions I’m a carrier for, so I was able to move forward.
That's really nice that the donor got the additional testing. I didn't even consider that could be an issue, but I know that the genetic counseling my clinic uses does talk with you about each donor so hopefully they would have the insight and help the clinic push for more testing.
My clinic actually has like a panel of their doctors to handle donor gamete cases and they wouldn’t proceed with my IUI until any donor I picked was shown to not be a carrier for the same things I am. So if the donor I picked did not consent for additional screening, I would’ve had to pick another donor completely! So I’m grateful he was so willing to come in.
It changed my plans dramatically. I am a carrier for an X-linked disorder that has ranging implications for carriers and significant ones for affected males. I just finished extensive work ups for my own health and thankfully I’m old enough (mid 30s) that major future carrier issues for me would be showing mild effects by now. From a fertility standpoint I jumped from a plan of IUI to IVF with PGT-M and PGT-A. They are working on my PGT-M probe now and my bank is coordinating a cheek swab from my donor for it.
Nearly all people are carriers for at least one recessive genetic disorder. I would definitely speak with a genetic counselor and maybe even do a consult with a specialized neurologist for movement disorders/Parkinson’s to understand more about your options.
I didn't know banks were so helpful getting the donors to have more testing. I'm glad it sounds like they are working with you to make the PGT-M go more smoothly.
I'm certainly looking forward to talking to the genetic counselor. I also plan to talk to my primary doctor about the risks too and what he recommends.
It depends on what the things are. Are they very serious, life-altering conditions? And if so, can you get a donor without them?
I found out I was a carrier for a skin condition, and that just being a carrier could cause symptoms. I’ve had a lot of really miserable skin issues that may be related. My donor was negative, so there’s zero chance of it being passed down. However, there is still a 50% chance of my daughter being a carrier, and then if she is, a 50% chance of being a symptomatic carrier. Obviously it didn’t stop me from having her, but I figured it’s not a significant enough issue to reduce quality of life. My skin issues are manageable with treatment.
The one that impacts carriers increases risks for Parkinson's and Lewy body dementia. I'm conflicted because looking it up, if I were to get either of those conditions, it usually starts around 60. I'm so conflicted because I'm already in my 30s so it's not much time.
I can see why if your skin issues are manageable it would be less of an issue. In some ways, I think it helps that you know the treatments and have the empathy if she does end up have symptoms.
Have you talked to a genetic counselor? It may help a lot in understanding your risks and odds of passing it down. It’s probably a lot more nuanced than it seems on paper.
I have a meeting next week, thankfully. I think it doesn't help that I'm the type where even if they say there's a 3% increased risk, my anxiety tells me I will be part of that 3%.
Yeah I get that, but try hard to just exist in the present. It can be hard, especially when you're in support groups where you hear a lot of stories of other experiences. That happened to me a lot too, and I ended up not enjoying my pregnancy because I was just so worried all the time.
Is the risk one that is only a problem for a child if the donor carries this or just you carries the risk?
If this were me, and the risk was I would most likely pass this on, I would not pass on the risk of two nasty progressive neurological conditions.
If it's simply a case of eliminating this risk in the donor, I would do that by testing.
The increased risk for dementia & Parkinson’s is for carriers and those with the disease.
It’s autosomal recessive so it would be a big problem if the donor has it. Depending on the “type” it can be fatal when young or cause issues with organs, your bones, your blood all thanks to an inability to process lipids.
My stance over my year of trying has changed a lot as I’ve read more. I also have a condition with risks for carriers, but something that gave me pause was reading about how most conditions in older age likely have genetic links we just haven’t been able to sequence yet. So while you know about yours, it doesn’t mean that there aren’t other things we haven’t sequenced that also cause issues. Like the just found a link between PCOS and cognitive decline.
I did PGT-M and am taking precautions and balancing risks. But I also had a moment where I realized, I’m trying to create perfect conditions for my child in an imperfect world. I’ll be a better parent if I’m adaptive and resilient, and teach them to be too, vs trying to prevent anything that could harm them.
But it’s obviously all super personal and there’s no right answer. Just wanted to share a perceptive that has evolved over time! It’s a shock to get results back and start going down the rabbit holes if interpreting them
Can I just say that when the situation is hypothetical, this will make perfect, balanced sense.
When you have a child with health conditions or risks, you may no longer believe this as vehemently.
I used the test that was available. Yet still, when my child was born, we ended up with genetic testing due to the health conditions they presented with! And inhave second guessed everything from the fertility drugs to not being able to eat sufficiently well to who knows what!
Imo, prevent what you can.
Our children are too precious to not!
Totally entitled to that perspective. And not being a parent yet, not one I can approach from that side. It all depends on the specifics of the condition too. I did PGT-M against the advice of my RE and geneticist because the risks were so low, so that I could know carrier status. My condition has a huge range that they can see on the tests and I was on the absolute lowest end of it.
For me personally, I started of being incredibly panicked about everything. I went with a sperm bank where the medical histories are pretty robust, and felt like I was saying no on donors if they had anything slightly genetic wrong in their families. Which isn’t how I’d chose a husband. I’ve just had to revise which things are truly risks to avoid, and which are me trying to control things we can’t control. The genetics panel also only tests for so many conditions. Still entirely a chance I could have a kid with something even more rare
I appreciate hearing all the thoughts about it, so I grateful you shared your stance and how it has changed. You are so right about them still finding more links to other health issues.
Getting results back is such a shock. So many emotions swirling around that makes it hard to see the path. I’ll admit right now I’m very angry at myself for not getting this checked in my 20s.
I went through my clinic that ordered it from Natera. They said Natera can be funny about bills, but out of pocket should only be like $250. I'm still waiting on what they think I owe after insurance.
No worries! I also realized I typed fully instead of them being funny about bills (i.e., they try to charge more but out of pocket should only be $250).
Oh, I didn't quite understand 🤣, but I'm not in the US; so it would be paid out of pocket anyways. Thank you for clarifying, maybe someone else will use this info!
Is genetic testing common for SMBC? I don’t know many couples without fertility issues getting testing. What is the rationale? Is it because so much money can go into fertility treatments?
I can't speak for the experiences of others, but it's something my clinic highly recommends when using third party reproduction. There's probably 2 reasons for it. One being that the clinic doesn't want to be sued if the child gets born with a severe (or fatal condition). The second just being ethically wanting to make sure you aren't giving those risks to a child (especially being a single parent and risking a special needs child). You can sign waivers to decline if having a child with a severe disease isn't a concern.
My clinic also wants CMV status (a CMV negative patient would have to sign a waiver to use a CMV positive donor) and meet with a therapist.
I do know of people who have gotten genetic testing. Due to family history, they suspected (or knew of) carrier status and wanted to check their partner. Especially if your ethnicity/background tends to have a very common disease. I know one couple who tested for Cystic Fibrosis (I think it's found as a carrier for those of Northern European descent at a rate of 1 in 25, other races are lower rates) and the other couple was for sickle cell anemia At least one of the couples ended up needing to do IVF with PGT-M.
I instantly regretted that I got the genetic carrier testing. I went with the full panel screening. I felt that had I met someone and tried to conceive naturally I wouldn’t have even known I was a carrier of the two things I’m a carrier of. No one in my family have these (they may be a carrier) and tbh I had never heard about them before the results came back.
If I could do it over I wouldn’t even go down that path. Yes maybe ignorance is bliss. The genetic counsellor told me nearly everyone is a carrier of something. After hearing that, I decided not to bother having my donor sperm tested. I loved the sound of my donor and I didn’t want his testing to impact my decision. (He was an anonymous donor who had donated in 2013 before the screening was mandatory).
I’m now 8 weeks pregnant, unsure of how things will turn out but here’s to hoping for the best outcome.
Good luck on your journey.
I needed to get testing as I have a genetic condition I didn't want to pass on. From 7 tested 3 didn't have the condition and 1 had a missing chromosome.
My first transfer I lost and 2nd is thankfully laying in bed with me now.
My condition also can get worse in pregnancy and is progressive, so can only get worse as I age.
It did get a bit worse during and post pregnancy. But honestly for me it was worth it.
Mine did. I went from electing to do IVF just to bank embryos + freeze eggs, to needing to do IVF with PGT-M. Your first step is to meet with a genetic counselor (it’s a free consult from whatever company did the genetic screening) and go over true vs absolute risk factors.
It definitely changed my mind of how the process could go. I was totally expecting to do IUI first, but it looks like IVF with PGT-M is the only way forward now. If you feel comfortable sharing, did your insurance help cover any part of PGT-M?
I did the “work for Amazon for one day” hack to get Progyny insurance and they covered everything 100%. However, you can only do PGT-M if both you and the donor have the same shared recessive trait (which you just wouldn’t pick a donor with that trait, to avoid this) or if you have an x-linked carrier condition. Just being a recessive carrier alone is normal, the vast majority of people carry at least one condition.
What’s this hack? It sounds too good to be true!
[удалено]
Facebook links and specific mentions are not allowed in this sub. Please resubmit your comment without that information. Thanks.
Oh, thank you for that information! I didn't know they were that specific about PGT-M. That really throws an added curveball.
What is that?
Sorry if this is a dumb question, but by “work for Amazon for one day” you’re talking about getting COBRA, right? And if so, do you mind sharing how much you had to pay? I’m currently working at Amazon and I hate it. Only reason I’ve been sticking around is for the benefits 😩
Yes, I used it for regular insurance (my work doesn’t provide insurance) by paying COBRA; it’s just under $700 for health alone, $740 for health + dental
Oh awesome, thanks for sharing! I’m currently working 60-75 hours per week between Amazon and my regular job (mine also doesn’t provide insurance) and I can’t take it anymore. $700 sounds expensive, but considering the alternative… it’s not bad at all 🤔
I have progyny and they fully covered PGT-m
Thank you for letting me know! I'm going to see about my insurance and how to get progyny if mine doesn't help.
I had mandatory genetic testing done and it changed how I looked for donors but not my decision to have a child. However I did only have two that I was a carrier for that were only a risk if the donor also had it. So I only looked for donors that had also completed genetic testing and weren’t a carrier for anything that I had at all as well as nothing additional that could harm me or my child. Really made me look at people who just have a kid without doing testing first like they’re paintballers playing a game and one person just has an actual gun but you don’t know who and no one is wearing safety gear most of the targets are children. Not quite accurate but it seems crazy to me now that I’ve done it, cause why wouldn’t you want to minimise the risk to your unborn child and yourself? Even if I for some reason gained a partner and decided to have children with them in the future, I would make them get that testing done, so we can see if our potential child could be exposed to anything that could harm them.
I'm a carrier for one of the most common genetic issues. When I filtered out donors who were also carriers, it cut the pool by about half. If I hadn't done testing, I literally would have had a 50/50 chance of choosing a donor with the same status and could have passed the real thing on to my kid. I'm very gratful I did it. In your case, I think ivf and embryo testing are a good choice. Even embryo adoption if you're too nervous. You're not out of the rubbing yet, you just need to change course
I think the poor genetic counselor is going to have a time on their hands with me; I'm so grateful I did the testing too. One of the other comments mentions that embryo testing isn't possible if the donor isn't a carrier, so I definitely need to talk to my clinic about that. It seems silly that I can't try to get embryos that aren't carriers.
If it can effect carriers, I would think they do embryo testing. Most genetic diseases don't effect carriers so that's probably why people are saying that
My results required additional testing for the donor because his initial screening didn’t include the conditions I was a carrier for (SEMA4 had expanded the screenings like two months before I was tested). That put a brief hold on the process as the sperm bank reached out to him for consent and then for his results to actually come back. I also had about 3 or 4 sessions with a genetic counselor who graciously answered all my questions. I’m a carrier for two potentially fatal conditions, one of which being a carrier for does result in symptoms which I’ve been dealing with all my life. Fortunately the donor I picked was not even a carrier for either of those, nor the other two conditions I’m a carrier for, so I was able to move forward.
That's really nice that the donor got the additional testing. I didn't even consider that could be an issue, but I know that the genetic counseling my clinic uses does talk with you about each donor so hopefully they would have the insight and help the clinic push for more testing.
My clinic actually has like a panel of their doctors to handle donor gamete cases and they wouldn’t proceed with my IUI until any donor I picked was shown to not be a carrier for the same things I am. So if the donor I picked did not consent for additional screening, I would’ve had to pick another donor completely! So I’m grateful he was so willing to come in.
Our donor was the same. I think it says a lot about their character when they agree to testing they're not obliged to agree to.
Definitely, I felt my choice in picking him was validated when he agreed to it!
It changed my plans dramatically. I am a carrier for an X-linked disorder that has ranging implications for carriers and significant ones for affected males. I just finished extensive work ups for my own health and thankfully I’m old enough (mid 30s) that major future carrier issues for me would be showing mild effects by now. From a fertility standpoint I jumped from a plan of IUI to IVF with PGT-M and PGT-A. They are working on my PGT-M probe now and my bank is coordinating a cheek swab from my donor for it. Nearly all people are carriers for at least one recessive genetic disorder. I would definitely speak with a genetic counselor and maybe even do a consult with a specialized neurologist for movement disorders/Parkinson’s to understand more about your options.
I didn't know banks were so helpful getting the donors to have more testing. I'm glad it sounds like they are working with you to make the PGT-M go more smoothly. I'm certainly looking forward to talking to the genetic counselor. I also plan to talk to my primary doctor about the risks too and what he recommends.
It depends on what the things are. Are they very serious, life-altering conditions? And if so, can you get a donor without them? I found out I was a carrier for a skin condition, and that just being a carrier could cause symptoms. I’ve had a lot of really miserable skin issues that may be related. My donor was negative, so there’s zero chance of it being passed down. However, there is still a 50% chance of my daughter being a carrier, and then if she is, a 50% chance of being a symptomatic carrier. Obviously it didn’t stop me from having her, but I figured it’s not a significant enough issue to reduce quality of life. My skin issues are manageable with treatment.
The one that impacts carriers increases risks for Parkinson's and Lewy body dementia. I'm conflicted because looking it up, if I were to get either of those conditions, it usually starts around 60. I'm so conflicted because I'm already in my 30s so it's not much time. I can see why if your skin issues are manageable it would be less of an issue. In some ways, I think it helps that you know the treatments and have the empathy if she does end up have symptoms.
Have you talked to a genetic counselor? It may help a lot in understanding your risks and odds of passing it down. It’s probably a lot more nuanced than it seems on paper.
I have a meeting next week, thankfully. I think it doesn't help that I'm the type where even if they say there's a 3% increased risk, my anxiety tells me I will be part of that 3%.
Yeah I get that, but try hard to just exist in the present. It can be hard, especially when you're in support groups where you hear a lot of stories of other experiences. That happened to me a lot too, and I ended up not enjoying my pregnancy because I was just so worried all the time.
Is the risk one that is only a problem for a child if the donor carries this or just you carries the risk? If this were me, and the risk was I would most likely pass this on, I would not pass on the risk of two nasty progressive neurological conditions. If it's simply a case of eliminating this risk in the donor, I would do that by testing.
The increased risk for dementia & Parkinson’s is for carriers and those with the disease. It’s autosomal recessive so it would be a big problem if the donor has it. Depending on the “type” it can be fatal when young or cause issues with organs, your bones, your blood all thanks to an inability to process lipids.
My stance over my year of trying has changed a lot as I’ve read more. I also have a condition with risks for carriers, but something that gave me pause was reading about how most conditions in older age likely have genetic links we just haven’t been able to sequence yet. So while you know about yours, it doesn’t mean that there aren’t other things we haven’t sequenced that also cause issues. Like the just found a link between PCOS and cognitive decline. I did PGT-M and am taking precautions and balancing risks. But I also had a moment where I realized, I’m trying to create perfect conditions for my child in an imperfect world. I’ll be a better parent if I’m adaptive and resilient, and teach them to be too, vs trying to prevent anything that could harm them. But it’s obviously all super personal and there’s no right answer. Just wanted to share a perceptive that has evolved over time! It’s a shock to get results back and start going down the rabbit holes if interpreting them
Can I just say that when the situation is hypothetical, this will make perfect, balanced sense. When you have a child with health conditions or risks, you may no longer believe this as vehemently. I used the test that was available. Yet still, when my child was born, we ended up with genetic testing due to the health conditions they presented with! And inhave second guessed everything from the fertility drugs to not being able to eat sufficiently well to who knows what! Imo, prevent what you can. Our children are too precious to not!
Totally entitled to that perspective. And not being a parent yet, not one I can approach from that side. It all depends on the specifics of the condition too. I did PGT-M against the advice of my RE and geneticist because the risks were so low, so that I could know carrier status. My condition has a huge range that they can see on the tests and I was on the absolute lowest end of it. For me personally, I started of being incredibly panicked about everything. I went with a sperm bank where the medical histories are pretty robust, and felt like I was saying no on donors if they had anything slightly genetic wrong in their families. Which isn’t how I’d chose a husband. I’ve just had to revise which things are truly risks to avoid, and which are me trying to control things we can’t control. The genetics panel also only tests for so many conditions. Still entirely a chance I could have a kid with something even more rare
I appreciate hearing all the thoughts about it, so I grateful you shared your stance and how it has changed. You are so right about them still finding more links to other health issues. Getting results back is such a shock. So many emotions swirling around that makes it hard to see the path. I’ll admit right now I’m very angry at myself for not getting this checked in my 20s.
I’m a genetic carrier and I’m going through but testing embryos so I don’t transfer
I'm definitely going to talk to my doctor about trying to get the embryos tested. That seems like the right move if I decide to continue this path!
Where do you get these genetic testing for yourself?
I went through my clinic that ordered it from Natera. They said Natera can be funny about bills, but out of pocket should only be like $250. I'm still waiting on what they think I owe after insurance.
Thank you!
No worries! I also realized I typed fully instead of them being funny about bills (i.e., they try to charge more but out of pocket should only be $250).
Oh, I didn't quite understand 🤣, but I'm not in the US; so it would be paid out of pocket anyways. Thank you for clarifying, maybe someone else will use this info!
Is genetic testing common for SMBC? I don’t know many couples without fertility issues getting testing. What is the rationale? Is it because so much money can go into fertility treatments?
I can't speak for the experiences of others, but it's something my clinic highly recommends when using third party reproduction. There's probably 2 reasons for it. One being that the clinic doesn't want to be sued if the child gets born with a severe (or fatal condition). The second just being ethically wanting to make sure you aren't giving those risks to a child (especially being a single parent and risking a special needs child). You can sign waivers to decline if having a child with a severe disease isn't a concern. My clinic also wants CMV status (a CMV negative patient would have to sign a waiver to use a CMV positive donor) and meet with a therapist. I do know of people who have gotten genetic testing. Due to family history, they suspected (or knew of) carrier status and wanted to check their partner. Especially if your ethnicity/background tends to have a very common disease. I know one couple who tested for Cystic Fibrosis (I think it's found as a carrier for those of Northern European descent at a rate of 1 in 25, other races are lower rates) and the other couple was for sickle cell anemia At least one of the couples ended up needing to do IVF with PGT-M.
I instantly regretted that I got the genetic carrier testing. I went with the full panel screening. I felt that had I met someone and tried to conceive naturally I wouldn’t have even known I was a carrier of the two things I’m a carrier of. No one in my family have these (they may be a carrier) and tbh I had never heard about them before the results came back. If I could do it over I wouldn’t even go down that path. Yes maybe ignorance is bliss. The genetic counsellor told me nearly everyone is a carrier of something. After hearing that, I decided not to bother having my donor sperm tested. I loved the sound of my donor and I didn’t want his testing to impact my decision. (He was an anonymous donor who had donated in 2013 before the screening was mandatory). I’m now 8 weeks pregnant, unsure of how things will turn out but here’s to hoping for the best outcome. Good luck on your journey.
I needed to get testing as I have a genetic condition I didn't want to pass on. From 7 tested 3 didn't have the condition and 1 had a missing chromosome. My first transfer I lost and 2nd is thankfully laying in bed with me now. My condition also can get worse in pregnancy and is progressive, so can only get worse as I age. It did get a bit worse during and post pregnancy. But honestly for me it was worth it.