I love you so much, and I want to never have your baby.
May 10, 2013 2:32 PM   Subscribe

My boyfriend and I haven't been together for a very long time, but it has already started to feel very serious and I see the potential for a longterm future together. We are both extremely close with our families and I know that family life and children are a huge priority for both of us. We're on the same page there. However... By extraordinary coincidence we both suffer from the same rare, semi-inheritable disease.

It isn't a simple genetic disorder that you can map out with a Punnett square -- latest research say it's partly genetic, partly environmental, but empirical evidence suggests children born to two parents with this disease have about a 50% risk of developing it themselves. The rate of incidence for this disease in the general public is about 0.2%.

Even before I met this man I was very much on the fence about having biological children. First of all because I am chronically ill, so a pregnancy would be high risk and difficult for me, but more importantly because of my fear of passing on this illness to a child (the risk for the child of me and a healthy partner would be about 10%). Now that it seems that my longterm partner may be this man, and therefore our children would have a 5X greater risk of developing the disease, I feel less ambivalent and more firmly in the "I will not have a baby" camp. I know that life has unexpected twists and turns and you can never guarantee a child's health, but knowingly setting someone up with a risk factor 250X higher than the average Joe for a painful and difficult illness seems cruel.

Obviously as someone who has always wanted children and who prioritizes family so highly, this is a painful and personal issue for me, in a way like learning I am infertile. I am not sure when is the right time to bring it up. On one hand, although the relationship feels like it has a lot of potential, it is still relatively early, too soon to spill my deepest and darkest (and I would consider this very deep and dark). On the other, it feels disingenuous for me to present myself as this woman who wants to be a mother and have a family (which I do, I do!) when I know in the back of my mind that I can't or won't give this man biological children. To be clear, I am 100% totally on board with building a family through adoption or fostering.

So, my question is two fold: 1. When and how would it be best to discuss this? If you were my boyfriend, how would you want to hear about it? and 2. Am I missing an angle here? Have you been in this or a similar situation yourself? When I look at the numbers I feel like it shouldn't even be an option, that knowing the 50% risk it's very clear that it would be wrong to have biological children, but maybe I'm missing something -- though that's wishful thinking, for sure.
posted by anonymous to Human Relations (25 answers total)
I love you so much, and I want to never have your baby.

It's not that you don't want to have his baby (or anyone else's baby). It's that physically having a baby would be a bad idea for you personally, for your health, and for the health of the child. Those are the facts.

But presenting it as "I do not want to have YOUR baby," even if there are extremely valid genetic reasons not to, can easily be seen as a rejection of him.

This is about you and your health and your child and your child's health, regardless of who the child is with. So you plan to adopt. Period.

Personally, I have a number of health issues (including a chronic, possibly genetic condition and endometriosis) so I don't know if I should have kids or even if I actually could have kids. The opportunity has not come up yet and won't for a while still, and I've not been in a relationship yet where it's been relevant. So that's where I'm coming from on this. Stick to the facts. What is best for you?
posted by phunniemee at 2:39 PM on May 10, 2013 [6 favorites]

I'm so sorry you're going through a painful time.

Would you be able to wait for a conversation to come up naturally with your boyfriend about a future together, and mention then that you're worried about having biological children together but do want a family? Or is this so much on your mind that you want to discuss it with him? If the latter, I would bring it up whenever you feel like you're having a calm moment together, and just tell him it's been on your mind since learning you both have this disease.

As to the ethics of having a child knowing they are likely to have a chronic disease... I don't think there's a clear yes or no here, and I don't have experience with this myself. But I do get from your question that you feel like you "shouldn't" have a child with your boyfriend more than you don't want to.
posted by chickenmagazine at 2:39 PM on May 10, 2013

It's hard to tell how early into the relationship you are, but if I've been dating someone for a few months and they brought this up I wouldn't be ABSOLUTELY TERRIFIED like most half-hour sitcoms would have you believe. Especially if things are already feeling serious, and especially if you start the conversation the right way. E.g. "Listen, I know we haven't been together all that long, and I don't want you to think that I want to have a family with you immediately or anything, but in case this is a deal-breaker for you, you should know it: I don't want to have biological children with you (for the reasons you've discussed here)." Make it clear you're not looking for a decision on the spot or anything; you're just providing him with information.

If I were in your boyfriend's shoes, I would see it as a thoughtful FYI. It would be weird if we were on our second date, but not 2-3 months in.
posted by craven_morhead at 2:39 PM on May 10, 2013 [3 favorites]

I don't see anything disingenuous at all with presenting yourself as a woman who wants to be a mother and have a family. You absolutely do. You just don't necessarily want that family to be biologically your own, for reasons that are incredibly practical and reasonable.

So from where I'm sitting, the real question is: What does your boyfriend think about the idea of adoption?
posted by Tomorrowful at 2:40 PM on May 10, 2013 [4 favorites]

This is an important issue, and while it may seem early to bring it up, it's also something that you may want to bring up soonish. If you both know you have this genetic predisposition, it may be that he knows what the chances are of passing it along, and it's a good thing to hash out as you move forward.
posted by xingcat at 2:40 PM on May 10, 2013 [2 favorites]

I cannot have children and I told my husband that very early on, like in the first month we knew each other, so that if biological children were important to him, he could move on.

You can totally tell him "I want to be a mother someday" and "I don't think biological children are a good option." They're not mutually exclusive statements in any way.
posted by desjardins at 2:41 PM on May 10, 2013 [31 favorites]

Talk about it early and often. Start now.
posted by Lyn Never at 2:46 PM on May 10, 2013 [6 favorites]

Many people choose to adopt rather than have biological children for reasons that have nothing to do with heritable diseases, so I can't see anything wrong with saying, if the subject comes up early, that you are totally psyched to be a parent and feel strongly that adoption is the way you want it to happen. You can elaborate, or not, about the many compelling non-medical reasons to adopt a child. If asked specifically why you don't want to have a biological child before you feel comfortable disclosing medical information, you're under no obligation to say anything except, "I've never felt it was my path," or "I just prefer to adopt." You are never obligated to disclose medical information before you feel comfortable doing so.

Later on, if and when medical history becomes something you feel comfortable sharing, you can add it to the list of reasons why adoption is the right path for you.

Wrapped up in all of this, and believe me I know from personal experience, is the fear that telling someone you have a chronic medical thing will make them run for the hills. I have MS, and disclosing it to my now-life-partner at the beginning of our relationship was the scariest thing I've ever done. I felt like he was getting damaged goods, and I was sorry I wasn't good enough for him. And I was pretty convinced that he was going to decide that my unsure health future was too burdensome to be worth it.

But you know, I'm not damaged, and I am good enough for him. Even with MS, I'm totally worth it. You are not damaged, or second-best, or somehow less than your boyfriend deserves because of your medical stuff. You are good enough for him whether you make a baby in your uterus or not.
posted by jesourie at 2:48 PM on May 10, 2013 [8 favorites]

Given as you both have the same medical issue, you could bring it up in the context of "I'm pretty worried about having my own biological children because of this condition." you can then ask if he has similar concerns about having his own offspring. It doesn't have to be about you two in particular, and it could be a bonding moment over how you deal with the ramifications of your illness. I don't think you'd need to explicitly state your extra concern about having children with him in particular, although it might come up. Honestly if you don't see eye to eye on this you want to know sooner rather than later, and getting how he feels about biological children in general will give you a way to start the conversation.
posted by nat at 2:59 PM on May 10, 2013 [1 favorite]

I also have a chronic illness, and decided a really long time ago that I wasn't going to have children because it was too dangerous for me. This is a personal decision: a lot of people with my diagnosis have children and are fine, but I am not happy with the odds that it would cause medical complications for me.

So, I'm 30, and the people that I may date are about my age. People my age are thinking about families. Personally, I tell people right away. Like, first or second date. I always disclose my illness the first time I meet almost anyone. It's closely related to my work, so when people ask why I do what I do it's just one of my reasons. I have found that disclosing has a lot of benefits and keeping my condition secret doesn't. Different people make different cost/benefit analyses and that's totally fine. Disclosure is a personal choice.

Maybe telling people right away is too much, too soon, but I don't want to waste anyone's time - and these things are a big part of who I am as a person. If I don't tell people that I'm chronically ill, or that I'm not going to have kids, I feel like I am being dishonest about who I am as a person. Again, this is personal: I study personal health information disclosure, and I've found that different people handle this very differently, but for me, my illness is part of my identity and I find that I want to talk about it.

I think that you can just broach the subject as a kind of "hey, this is how I feel about having kids. I wish I could, but I really worry about passing on my condition. I decided that, even though this is as painful to me as being infertile would be, I am not going to have kids." See what he says. Or, you can zoom out even further and say something like "So, what do you think about people with our condition having biological children?"

It's a conversation you'll need to have, and he already knows about your medical condition - and really understands it, because he shares it - so I suspect this conversation will be smoother than you may anticipate.
posted by k8lin at 3:04 PM on May 10, 2013

I have a homozygous recessive genetic disorder. I was diagnosed late in life. This led to my first born child also getting diagnosed. By the time we were diagnosed, my husband had already had a vasectomy for unrelated reasons. So I didn't wrestle with such questions until I was going through my divorce. Most of my relationships from that time were primarily online and, since then, I have been celibate (for a long time).

At some point, I blogged about my concerns. One of my motives for doing that: I hope any future/potential love interest reads it well before the topic is at all relevant. If not, I can just send him the link should it come up. That's my plan for how to address things in a "It's not you, it's me" kind of fashion. I am including the url below because you didn't provide an email address. Perhaps reading it would help you with framing the issue. Perhaps sharing it with your SO would be a good way to get the ball rolling on a conversation with your SO. If it gets too tense, you can both trash talk me as an easy out for a difficult topic (no, I'm not kidding: criticizing my views would probably be an easier, more socially acceptable means to express yours than stating yours baldly).

posted by Michele in California at 3:18 PM on May 10, 2013

If you want to have kids with this man but do not want his genes, which hey sounds pretty reasonable here, there are a variety of solutions for this ranging from low tech and fun, to turkey baster based, to medical and anonymous, in addition to adoptive or fostering.

I would really want to have a conversation about these kids of concerns right about the time my partner and I started getting curious about each others ideas about family, which it sounds like you're at least at.
posted by Blasdelb at 3:29 PM on May 10, 2013

I'm in a similar boat. However, where my mind goes is, "Let's save up for donor eggs and get educated about IVF." Donor sperm is also an option but I'm the sicker one, with the sicker family, so I think more about donor eggs. If your mind is going to, "I never want to have kids" rather than "what are our reproductive options," then maybe there is another issue at play here. (Like, not wanting children in general, or at least being really indifferent about it.) Just a thought.
posted by htid at 4:10 PM on May 10, 2013 [1 favorite]

If you were my boyfriend, how would you want to hear about it? 

By email. So that I can contemplate and think about it privately.
posted by Kruger5 at 4:42 PM on May 10, 2013

Since you both suffer from this condition and are presumably aware of the same genetic odds of passing on the condition this would seem a natural topic of discussion. I would start one. As said above, it doesn't even have to immediately focus on "the two of you" but could be more in the vein of "how have you thought of handling this?". Given that you apparently each know of the others condition I would think you probably have each had thoughts about this.

Another factor is how you feel about finding a different relationship with much lower odds of passing along the condition. Your discussion could also disclose how he feels about that.
posted by uncaken at 4:48 PM on May 10, 2013

It sounds to me like you're pretty clear about how you feel about him (and it sounds like, from your comfort level and confidence in stating this up front, that the feeling is mutual—yay!) and you've both already shared a deeply personal thing with each other (that you both have this illness). He's well aware of what the illness means for him and the possibility of his children inheriting it, having his own personal experience with it. I see no reason to hold back on talking about this, as much as you're comfortable sharing. It's important to you. And because it's so deepest and darkest for you, maybe state up front a limit to how much you want to discuss it all, preferring to ease into it over time. Let him know that it's deeply emotional for you and that you want to take it slowly, but that it's also important to you so you want it on the radar, so to speak. This allows him to be aware and sensitive to your needs without the pressure of taking it full-on and you feeling as though you must divulge everything. Since he's getting to know you and you're both working on mutual closeness, he'll have some idea of what you're getting at anyway. You can fill in all the gaps at the pace you want, when you're more comfortable and ready.
posted by iamkimiam at 4:53 PM on May 10, 2013

When and how would it be best to discuss this? If you were my boyfriend, how would you want to hear about it?

I'd want to hear everything that's important enough for you to be confiding about with strangers on the internet, ASAP.

Except the other commenters are right: the worst possible way to frame this is: "I want to have children — just not your children!" Much better would be: "If we were to have children, I'd want us to adopt." See how the first phrasing separates the two of you (positive about you in the first part of the sentence, then negative about him), and the second phrasing looks forward to doing something positive together? The meaning may be the same. But there's a big difference.
posted by John Cohen at 4:55 PM on May 10, 2013 [1 favorite]

There’ s a lot of difference between talking about whether or not the two of you will have children together, and your personal feelings about having children. The first one is something that may or may not be weird early in a relationship, the second one is something I’ve talked about with people I hardly know.

I think it’s essential that you voice your thoughts on the subject. I know people who were in long term (like a decade) relationships who split over this. It’s a make or break issue.
posted by bongo_x at 8:24 PM on May 10, 2013

Nthing everyone else that there are ways to have children other than the old-fashioned way.

And that you should talk "early and often" about how important biological children are to him.... And about how important it is to each of you to avoid having a child with your condition. (I have a chronic medical condition. I don't want my child to develop it. But I would rather this child, my child, have a shot at the Planet Earth, with or without it. I say that as a reasonably new mom, admittedly, but also as someone whose condition is such that managing it in a young child would be very, very, very difficult.)

Again, there are ways other than the old-fashioned way:

You can adopt.

You can raise foster children.

You can use donor eggs.

You can use donor sperm (much cheaper than donor eggs. Much, MUCH cheaper.)
posted by kestrel251 at 8:26 PM on May 10, 2013

Since you and your boyfriend know you have the same genetic disorder, that makes having the discussion possible. I mean, I assume you talk about your health issues together? So it's not too far a leap to talk about the genetic implications for potential offspring. If it helps to refer to the kids as "potential future offspring," go for it.

My husband and I found out that we were both carriers of a rare genetic disorder when our son was born and diagnosed with it earlier this year. Any future kids have a 25% chance of the same disorder and 50% chance of being carriers. Like you, I now struggle with the idea of having more kids. I don't know when I'll be able to come to a decision or if I'll ever be at peace about it, but I wanted to let you know that you're not alone in this dilemma. I wish you the best.
posted by Maarika at 8:52 PM on May 10, 2013

I'm a little late to the game, but I'd suggest going to see a genetic counselor (if you haven't already). They would be able to give you hard numbers on recurrence risk and carrier status, as well as discuss options, particularly preimplantation genetic testing (if you are considering IVF).
posted by kuanes at 3:07 AM on May 11, 2013

You may want to frame the initial discussion as simply that your disorder makes it high risk for you to be pregnant, so your thoughts are that if you have children, you will need to have them by adopting/fostering rather than pregnancy. I don't know what the concerns are for your condition w/r/t pregnancy, but high risk pregnancies in and of themselves are no joke - add on the risk of passing on the condition and having biological children via pregnancy gets even less attractive.

If I were you, I would talk about it in terms of your health and your potential future pregnancies. Once you've established that this is a concern for you, you can expand to talk about your increased chances of passing on your condition with your partner. I also have a chronic illness that could be passed on and made for a high risk pregnancy. I was very upfront about this with my partner, in terms of the risks to our future children and the risks to myself. My condition, thankfully, is pretty mild and it wasn't a deal breaker, but it was absolutely part of the discussion as soon as we started talking about having children together.

(The donor eggs/sperm are really good suggestions for the genetic issues w/r/t the fetus, but don't address the problem of being a high risk pregnancy to start with. Depending in what pregnancy would entail for you - bed rest? Risk of pre term labor? - you should really consider how important the prenatal bonding is to you, especially if the child is not a biological product of you + husband. I say this lovingly as someone who had a high risk pregnancy and who has watched friends with chronic conditions on full bed rest - it is in and of itself a HUGE and stressful mess. This is something to consider seriously when you think about how important becoming a parent via pregnancy is to you.)
posted by sonika at 7:36 AM on May 11, 2013

I second the advice to go make an appointment with a genetic councilor. Discussing issues like this is what they are trained to do. They can go through the options and the statistics with you.
posted by Alice Russel-Wallace at 8:18 AM on May 11, 2013

Just to reply to sonika--- not all chronic conditions generating "high risk" pregnancies result in bed rest or similar. I have a chronic condition, had a high risk pregnancy, and was OK other than spending ALL my damn time at the doctor. (condition = type 1 diabetes and thyroid disease. Bed rest was never mentioned, but there were a lot of trips to the endocrinologist, and twice weekly NSTs at the high risk OB an hour away.)
posted by kestrel251 at 7:11 PM on May 11, 2013

not all chronic conditions generating "high risk" pregnancies result in bed rest or similar.

Right, I was saying it was important for her to ask her doctor about this. I also had a high risk pregnancy and did not end up on bedrest, though I did have complications in labor (that resolved and baby was fine and I was fine after sleeping it off). Yes, all the time in the doctor's office - especially in 3rd trimester.

(Epilepsy, meds put fetus at increased risk of certain birth defects - which he didn't have, genetic counseling - totally fine; 4% chance of my son developing seizures, level 2 ultrasound - which just means it's extra specific and takes a long time which was one part stressful and six parts I GET TO LOOK AT MY PROTO BABBY, medication monitoring - monthly blood draws upped to every two weeks in 3rd trimester, was unable to receive standard Vitamin K, then had a seizure due to prolonged labor - was able to sleep it off with an epidural and avoided a csection. Next time around, I have doctor's orders to receive an epidural at the first contraction as the labor is much riskier for me than the entire pregnancy before it. Anyhow, an example of how a high risk pregnancy can go and it's stressful, but for me in my situation, it was totally manageable with prior planning and medication adjustments.)

posted by sonika at 8:45 PM on May 11, 2013

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