Throwaway account because my husband knows my main.
My husband (30M) and I (30F) have been married for 3 years, together for 6. He has a rare genetic disease. Without giving too much away about his identity, it was a sporadic case for him (ie- none of his family have it). We are thinking of having kids and recently met with a genetic counselor who told us that the genetics of the disease are not fully understood because of how rare it is. We can test for some genes linked to it, but even if this screen comes back negative, he could have anywhere from a 5 to 50% chance of passing on the disease to any offspring we have (more likely close to 5%).
For me, the risk seems very high, and I feel really hesitant to have biologic kids with him knowing that we could give them something that could potentially be life altering and negatively impact them. I have always wanted kids and suggested that we try a sperm donor using my eggs.
My husband is really hesitant about this. He thinks that a 5% chance could be acceptable. He also suggested adoption. I think he is hesitant to have a kid that is biologically mine but not his, which I understand, but we also both really want kids. Adoption can be really difficult, and I’m hesitant to go through with it when we can do a sperm donor.
I guess my options are:
Go through with having a bio kid with him, but know that we could potentially pass on a terrible disease.
Adopt with him, knowing that I wouldn’t be able to have my own biologic kids.
Have a kid with him via sperm donor. I would only do this if he was ok with it. Not ideal by any means but seems like the best option on my end, maybe not on his.
Divorce.
I guess I just want to get other people’s perspectives on this, especially if you have struggled with infertility or something similar.
Thank you in advance, I just feel really lost here.
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**tldr: husband might pass on genetic disease to offspring. i want to do a sperm donor, but feel very lost.**
6 comments
Is couple’s counseling an option? Because if he’s too hung up on having biological children to think about what’s best for the kids to come, this is way too much for reddit to unpack.
Then it’s not a 5% chance. It’s anywhere from 5% to 50% because nobody knows for sure. And that is unacceptable if we’re talking a disease that causes early death or a poor quality of life. So yeah, it seems like he’s being unreasonable.
But maybe his opposition to using a sperm donor goes beyond logic. Maybe he feels that his disease is robbing him of being a biological father or that you are rejecting him. He’s probably dreamed of having his own children. All the baby talk is so emotionally charged because it deals with dreams you’ve had your whole life versus the finality of the choice you make. (I’ve been there with my husband. We went back and forth about having another child.)
But these feelings he might have would be selfish ultimately, because we’re talking about another person’s life. Try to be sensitive to his feelings but make the point that feelings do not always indicate the best course of action. You should take on thinking like parents and go with the most loving decision for this child. And the most loving decision is to not curse this poor kid with an awful disease.
Anyways! Tell him what you want (I’m guessing baby DIY with sperm from a stranger) and that the risk of having a biological child with him is unacceptable and you refuse to take that chance. Lay out your case with facts about how expensive and time-consuming adoption is compared to using a sperm donor. Tell him how much you want to experience being pregnant.
Lots of men are fathers to children who do not share their genes. Unconditional love for his child makes a man a father.
Edit: And yes, therapy if talks come to a standstill.
I think first you need more information on the rare genetic disease. If it’s so rare that there aren’t extensive studies, that could be an indication that many of those with the condition are asymptomatic, thus living a totally normal life. (I personally “suffer” from one such genetic disorder/disease and it’s had zero impact on my quality of life; I was even the first one to find out about it, looking through a med journal on a totally separate topic). Also, having spawned myself, there are non invasive ways to determine any fetus/baby (omg don’t yell at me for wording) potential genetic liabilities very early in pregnancy. However, know that modern medicine’s testing abilities far exceed our understanding of said tests. By that I don’t mean accuracy, but that our understanding of how said genes translate into actual genetic characteristics is fundamentally basic, combined with the genetic lottery that exists in both your husbands sperm and your eggs. Each of them are different combinations of different genes. That’s why it’s a 5 – 50% chance. Because no one knows the answer.
I hate to use a meteorology metaphor about having a child, and I’m not making light of your situation, but that’s the same as a 5-50% chance of rain on a sunny day. There’s also a 5-50% chance your child will be an irredeemable asshole, or have light eyes, or a cleft palate, or at this rate die of fentanyl overdose while trying coke* for the first time. You also have a good chance of miscarriage, because all women do. Many times those miscarriages are the body’s way of rejecting a fetus. I’m over generalizing, but you need to make decisions based on the information you have not the information you don’t, and you don’t have that particular disease answer. Remember, we’ve been reproducing as a species very successfully for a very long time without the help of modern medicine. More information does not always provide more answers.
I would ask yourself a number of very personal questions, taking all genetic and/or potential problems off the table sts:
1. Do you want a baby, or do you want a child with your husband?
If the latter, try and have fun doing it. Give him extra credit for discussing adoption as a viable option, it’s a gorgeous thing and the world needs more people willing. Put the cart back behind the horse.
Tldr: Not enough information and pregnancy, genetics and childbearing and rearing are never a sure thing.
Edit: by discover I mean initially self diagnose and confirm with further tests, NOT discover some rare genetic disease. My bad wording.
This is a *big* big question that even decades from now after you’ve made your choice, you’ll probably still wonder if you’d made the right decision.
Talk it out. Talk with the genetic counselor. Talk with couples counselor. Learn about the disorder. Learn about whatever research or therapies are around.
Basically, decide *together* what is an acceptable risk.
Super hard spot. I wish you both the best as you navigate coming to a consensus.
Adoption gives him peace of mind and you both would still get to have a child
It’d be helpful if you could talk about how serious this disease is. “Rare genetic disease” by itself doesn’t really tell us much- like, I’ve got a pretty rare blood disease but it has very little impact on my life beyond new doctors freaking out a bit at my lab results when I move lol.
I think you need to weigh the relative risk versus how serious/debilitating the genetic issue is. Is embryo selection not an option?