When She Has A Hereditary Genetic Disorder

[Minor editing to obscure the exact organ disorder per reader request]

Reader:  Athol,  I’ve been a big fan of your book and blog since the beginning – I congratulate you on your success.  It has helped me get through a very difficult part of my life, and gave me direction and answers to questions I didn’t even know I had. (Knowing alpha vs. beta = huge difference!)

I have a question for you that I haven’t yet seen anyone else address on your blog, but one that I think would greatly benefit your readers.

I’m in my early 30’s and I’ve been dating a wonderful woman for a year now, someone I consider marrying in the future.  She’s a great partner in life.  By that I mean, she’s very pleasing to be around, fun, has good values (so far), fantastic in bed, and due to her having been born and raised in a different country, isn’t tainted by the typical American feminist entitled views – she actually wants to contribute to the relationship and seeks out ways to make it stronger.

Nobody’s perfect – I accept her for who she is – and vice versa.  However, she has a hereditary genetic disorder [that will cause organ failure in about 30 years] unless we’ll be able to grow her a new one from her stem cells, which is a very real possibility, but just that – a possibility. She does her best to manage it long term with diet, exercise, low stress, which extends her life but doesn’t cure the disease.

The worst part is that it’s hereditary – our offspring have a 50/50 chance of getting it, unless we decide on genetic testing and in-vitro fertilization (~$30k+), with no guarantee that it’ll work.

From a male body agenda perspective, it’s a huge negative, since a) my potential wife may just pass away in 30 years and I’d have to spend retirement by myself w/o my life partner, b) our offspring will have a high chance of getting this disease and they will lose their mother when they’re also in their young 30’s.

On the flipside, it’s in my best interest to find a wife, who has the qualities I deem vital for a viable and very happy future. In her I see all the things that I always looked for and haven’t seen or found in anyone else – she makes me very happy (dedicated to family as much as I, spectacular in bed, giving and caring, loves adoring her strong husband, among a million other things).  As I said, she’s a life partner, a true catch – and I say that from as rational, level headed point of view (as opposed to an emotional one) as I can.  Not to sound like I have one-itis, I doubt there’ll be another one like her.  And that’s the huge plus – or in other words, a trade-off.

On one hand, I can attempt to find someone who fits the profile (i.e. healthy, smart, sexy, etc) but I will find out something else about them that’ll be a turnoff (as it’s inevitable) – or take my chances with her.  Which is what I’ve decided to do.

I’m very curious as to what you think, Athol?  I love her and see great things down the line, but the thought of potentially losing her in some time scared the crap out of me.  I came to terms with it, though.  With most people, you really don’t have much of a clue what they’ll die of (and most of the time, you don’t even think about it), but with her, you’re pretty certain.  I didn’t think facing her mortality at this point would happen – but it makes me appreciate every moment w/ her, and saddens at the same time.

I’d really appreciate a response from you. Look forward to your continued success.

Athol:  I think your mind is made up and there’s nothing I can say to persuade you otherwise. Which is not to say that I think you are wrong. If this is her only defect, it’s a judgment call.

She does sound good in every way but this. I think you just have to hope like hell that medical science advances in the next twenty years and [a new organ] can be grown from her stem cells and thus can be replaced.

Kids are amazingly expensive to raise. The $30,000 may only amount to 10% of the cost to raise the kid over it’s lifetime. So if you’re in for $300,000, does being in for $330,000 really make that much difference?

How much would the extra health care cost over the child’s life if you get unlucky on the 50/50? $50,000? $200,000? I think you might want to see the cost of in-vitro fertilization as almost like an insurance premium.

I would however make sure this something that is discussed and agreed upon before getting married. These are big decisions and you need to be able to move into the future together with a agreed upon plan. Perhaps instead of a big wedding, you have a small event explaining why, and put all the wedding budget and giftage toward the genetic testing and in-vitro. It’s a romantic tear-jerker of a story to tell and I suspect you’ll get a lot of helping hands. Besides that, shopping for wedding presents is a pain in the ass and the option to just write a check is great.

Passing the disorder onto your children would be a heavy burden to carry through life, both for you and for them. I can very much assure you that genetic matching and evaluation will play a role in dating and match making in the nearish future. If they have a hereditary genetic disorder, their life may be very lonely indeed twenty or thirty years from now. Take a peek at Genepartner and 23andme  for example. These are fairly crude now, but not crazy expensive. In a few decades they will be routine and quite accurate.

Personally I passed on pursuing an ill young woman as a potential wife. I wanted her so badly, but I could see the long struggles ahead so pulled back from her. A little while later I meet Jennifer and moved heaven and earth to be with her. Both were excellent decisions and I have no regrets. My life has been amazing with Jennifer.

Life can be random too. I knew a guy who married a perfectly healthy 22-year-old and breast cancer took her within two years. I had a 25-year-old friend killed when she was rear-ended at a red light by a drunk going over 60mph. I also know a guy who was given three months to live when he was born, and one year to live when he was twenty and still made it to age thirty-three before his luck ran out. When Jennifer was twenty-eight and our daughters were still just a baby and a toddler, her mammogram results were sent to our house instead of our doctor and the results bluntly and clearly stated “malignancy.” Jennifer sobbed herself to sleep in my arms every night while I had unstoppable daydreams about her withering away over the next year in pain and despair, leaving me alone with the girls. The biopsy results came back negative. Then much the same shit happened again eight years later.

All you can do is influence the odds in your favor as best you can, but there are no guarantees of anything. You have a difficult road ahead, but maybe the right road too.

And yes you do have Oneitis for her…

…but as long as she also has Oneitis for you, that’s not a bad thing. If you’re getting married, you’re both meant to be in love.

Comments

  1. pdwalker says:

    To the original poster,

    This may sound callous, but I’ve always checked out the long term medical history of any future potential mate because I found it to be so important. I’ve ended serious relationships when previously unknown problems, (hidden, undiscussed,etc) came to light.

    I’ve seen what happens to families that have serious, genetically related, issues. The very last thing I’d want to do is bring that into the family and pass it onto my children, especially if it is going to cause long term pain and serious quality of like issues.

    It’s hard enought raising a family without knowingly throwing in a 50/50 chance of additional problems into the mix.

    This is just my opinion. I hope that whatever you decide that it turns out to be the right decision for you.

    PS: if you stay with her, and it sounds like you will, have a large family.

  2. ChevalierdeJohnstone says:

    Dude who told you she has 30 years left? A doctor? What the frejebus do they know? Is it marked on the calendar or something? People live 30 years after they develop cancer. There are AIDS patients older than your girlfriend will be when you apparently think she’s gonna die. She, or you, could get hit by a bus tomorrow. On the “how long will I have with her” thing – you’re a freaking moron. You can’t plan a marriage – or a relationship – 30 years in advance. If you can see yourself with her in 5 years – make it happen. LTR is all about making it work. Haven’t your learned anything from Athol? A successful marriage, absent psycopathy, is up to you to do the work to make it happen. 30 years is a lifetime. Your dick may not work 30 years from now anyways. Holy frybabies it used to be that surviving to your 60s was an accomplishment. Lighten up!

    The kids thing is more complicated. To be blunt, I’ve never known nor heard of any couple who have a child with severe genetic defects who get by without God. Athol is very un-religious in his approach, which is fine because it is spot-on accurate. If the biology doesn’t work, God ain’t gonna help ya – He invented biology after all (if that’s how you believe). But the fact is that believing in the guidance of a higher power is very helpful to couples rearing children with genetic problems. The language I’m using is exemplary. People who trust that God has a purpose for them and their children admit that their kids have genetic defects. This is not a sore spot for them – it is what it is. A retarded defective runt still has a soul that will shine in Heaven. It’s people who don’t believe who have problems with this sort of thing. They say their kids are “special”. Sure a feeding tube is “special” but it’s not something to brag about. That isn’t a failing – relying on the Holy Spirit to guide you can pretty much screw up your life in the end. A believer would say that’s because God doesn’t care about the trappings of the mortal life; a nonbeliever would say scripture doesn’t have much to say about the year 2012 – either is a pretty good answer. But regardless, if you’re prepared to grow closer to this woman – and lead her – to comfort and sanctuary in God and to accept God’s blessing of a child who has ‘special needs’ – go for it. If all this religious God talk makes you uncomfortable and you think it’s kinda weird – then no, you will not be able to handle this on your own. At best you will dump the worryfull stressful burden on your friends and loved ones, and who wants to do that? Walk away while you still have the chance to do so with honor.

  3. CdJ – If he is to proceed, the hope for this couple is stem cell research and genetic technology.

  4. whatmeworry says:

    I’ll up the callous pragmatic ante one further.
    Skip the in vitro nonsense. Get pregnant naturally and genetic test the fetus early. This is a fatal disease. Do what you have to do.

    With regards to the potential wife, it depends. Is it ~30 years and fall down dead, or 20 years ok, then 10 awful years (depending on organ: dialysis, paralysis/dementia, liver failure, or cardiac cripple)?

  5. Reader, my wife and I were unaware of any genetic problems when we married. We had a severely disabled child with Rett Syndrome. We decided not to have any more children, not because of the burden on us, but because of the potential for it to happen again and the burden on the child. Doctors told us that our beautiful daughter would never see 12 years of age. At nearly 25, she finally passed away. Raising her was difficult, but I don’t think it was any harder than having a “normal” child, just a complete different set of worries and problems.
    From this beautiful little girl, I learned patience, kindness, perseverance and tolerance. When I had a bad day at work, I could look at her smile and think,”If this kid can smile with everything that is happening in her life, then I have no reason to complain.”
    I wouldn’t advise doing it again, but have only one regret and that is that my daughter lived a life of constant pain and difficulty.
    Doctors don’t know everything, don’t let them tell you that they do.

  6. What happened to loving someone? When you really love someone, it’s irrelevant if they will be ill. If you can’t imagine your life without her, if being sad with her is better than with anyone else, go for it. Jaysus! YOU could croak tomorrow from a coronary or being splattered by a bus. She was honest about her health, another bonus on her side. If you can’t handle the 50/50 of children possibly having problems, dedicate yourself to her and your happiness. I don’t know how old the poster is but 30 years is not a small thing to walk away from in favor or uncertain happiness for 40-50 years with some other person. If you love her so much, would you want her to suffer her end without you? Sometimes all this pre-planning sucks the wonder that is what living life is all about.

  7. Swampwillow says:

    What about adoption? If you have truly found that special woman, but you both worry about passing on the genetic disease, adoption would be a lovely way to share that love.

    Adoption in America is probably going to be as expensive as the IVF route and have less chance of success.

  8. Version3.0 says:

    Gotta pile on here. You love her, she loves you. She meets about 99% of what you’re looking for, which is about as great as that ever gets. Everything else is moot. Grab a hold of each other and live as long as you’re gonna live together.

    Life is not about guarantees, and I’m a risk analyst so I can say this. Make yourself and others happy when you can for as long as you can.

  9. “Skip the in vitro nonsense. Get pregnant naturally and genetic test the fetus early. This is a fatal disease. Do what you have to do.”

    So we should just kill off the girlfriend as well? I mean, she’s going to die eventually too – in her 50s or 60s it sounds like. Honestly, that’s not a bad run if it’s well-lived. My dad died at 50 from cancer… yeah, it really sucks, but he made a huge impact on his community and family in those 50 years. Point is, no one knows what the future holds, and if you’re going to create a life, you owe it to that life to give it the best chance for survival and let come what may.

    On another note, Is she on board with the whole IVF/genetic testing/destroy the embryo if it tests positive? I’m guessing no.

    These are big questions you need to discuss with her first – I couldn’t tell from the post, but I got the impression that this is just the musings of the OP, not something they have worked through together.

    (Also, if it’s a matter of organ failure, is transplantation not an option?)

    Transplanation is the only option. Hence the hope that in the future a replacement organ can be grown from her own stem cells to avoid the risk of organ rejection. Donor transplant lists are lucky dip.

  10. To the OP,
    RE: IVF/genetic testing and other reproductive alternatives,

    If the cost in the US is too prohibitive, you could look at places like India and Mexico. I watched a special once, it was about medical tourism. Basically, many people from the US and other Western nations are going to certain countries where they could have procedures and treatments for half the cost or even lesser compared to what they would have had to pay in the US.

    I remember a segment on couples going to a hospital in India that specialized in IVF, surrogacy and other related reproductive issues. Also there are treatments not offered in the US for certain types of illnesses that may be offered in these places.

    If you decide to continue the rlsp, then this may be something to look into. I’m sure you can find website and forums on the net.
    Goodluck

  11. GumbyMan says:

    I Agree with most posting that 30 years is worth going for! If you lover her go for it.

    If the risks or expenses are to much for having your own kids, look into adopting, or foster parenting. There are lots of kids here already that could use a loving good home. No need to have your own.

  12. Days of Broken Arrows says:

    However, she has a hereditary genetic disorder [that will cause organ failure in about 30 years] unless we’ll be able to grow her a new one from her stem cells…

    You’re leaving out an important detail. What happens during those 30 years while her organ(s?) are starting to fail? The period before the failure, be it 5, 10 or 15 years, will also cut into the quality of living. I was married to a woman who was ill for a half decade (she chose to avoid treatment and attempted to heal “naturally”) and I cannot tell you the stress this placed on the marriage and my life.

    The worst part is that it’s hereditary – our offspring have a 50/50 chance of getting it, unless we decide on genetic testing and in-vitro fertilization (~$30k+), with no guarantee that it’ll work.

    While religious people will tell you this is “a blessing” and “God’s plan,” it’s doubtful that the kid who gets sentenced with such a disease will feel the same way. Put yourself in the shoes of a child who is suffering. Would you want to be that child — or the adult version of that child? Please take a moment and really, really try to imagine you’re someone else and that someone else has a serious illness. And IMO when you knowingly sentence a child to an illness, you’re basically bringing someone into the world to suffer and this is a form of narcissism at best or child abuse at worst. If you marry this woman, consider adoption or some other method. It bothers me that some people just bring sick kids into the world and only see it through their eyes or the eyes of “God” (I’m not accusing the original writer of thinking this way, but there are people I know who do).

  13. kryssie says:

    I would suggest reconsider adoption. Yes, it costs a crapton of money to adopt a newborn baby. Consider a toddler or young child? And, no, you can’t garantee the health of an adopted child. But if your adopted child got sick, you would not be bringing a sick child into the world. You would be taking care of a child who is already in the world and who is in need of care. You won’t be passing on your genes if you adopt, but once you fall in love with a child, your body agenda will want to protect that child more than anything, just as you would with your genetic offspring. (I’m not personally an adoptive parent, but will be someday. I do know people who are.)

    There may also be the option of egg donation/surrogacy, but I have no idea of the costs/legality of those things where you live.

  14. actually if you’re not picky about age/race, fos-adopt is really inexpensive, at least here in California. doing private adoptions through a private attorney is expensive. international adoption is really expensive. doing fos-adopt through the county, they actually pay you a stipend each month until the kid turns 18.just about all the parents pay for is their home study & the fingerprinting & background check, a couple grand at the most.

  15. Thirty years is worth going for. If she will be suffering debilitating illness all or most of that time, it may not be worth it though. That kind of stress can erode love.

    I personally would not adopt. With all we know nowadays about some behavioral problems having genetic causes, you have no idea what you could be getting yourself into by adopting a child that the parents were either too irresponsible or callous to care for themselves. An example would be the addictive gene that makes people more likely to become alcoholics and/or drug addicts. How many children up for adoption were taken from parents who couldn’t care for them due to their addictions, or given up at birth by drug addict parents who had no interest in raising them? Do you want to take the risk of having a child who grows into a drug-addicted teenager you have to force into rehab, and hope desperately the rehab helps? I’ve known people in that situation. It’s heartbreaking.

    Then there’s the possibility that the birth mother couldn’t keep the child due to mental illness. What if it’s hereditary, and the child ends up with it? Just imagine dealing with a bipolar teenager. Or worse yet, a bipolar adult woman who irresponsibly produces children she can’t handle, so you end up with them while she goes on to the next drugged biker who beats her. Again, I’ve personally known someone who did that.

    When you adopt, you have no idea what you’re getting yourself into. It’s not worth it unless you are desperate for children and absolutely cannot have your own. Even then, I’d think twice about it.

  16. To the OP:

    So she lives approximately 30 years?

    Why do you extrapolate this to “I’d have to spend retirement by myself ?”

    and why are you calling her your “life’s partner?”

    This woman can give you a lot of things, but she can’t be your “life’s partner”

    Barring something random, like an accident on your part or some astounding advance in medical science, she’s not going to live as long as you. You understand that logically and rationally, but it seems to me that you haven’t been willing to accept it emotionally yet.

    Are you willing to acept her completely for who she is, and can you be willing to let her go, and be able to let her know that it’s OK that she has to leave you, when the time comes?

    And what’s this about being alone in your retirement after she passes away? I personally know a couple who got married at the ages of 65 & 63, and another couple where she was 60 and he was 72 when they got together.

    I can guarantee you, that she would want you to find another once she’s passed on. From what I’ve heard from their own lips, women are particularly generous in this regard.

    Athol is right, you do have oneitis, as indicated by the fact that you’re not willing to look clearly at the end as well as the beginning of your relationship. Lose the oneitis, *truly* accept her condition, and then you’ll be able to move forward without fear.

  17. I would excerise extreme caution about jumping into foster-adoption. Just do foster parenting with a private agency (not the state DCF/CPS outfit) and see how you like it first. There are usually extremely good reasons the state is willing to pay you to foster a child.

  18. This IS what pre-marriage blood tests were for.
    If you don’t want handicapped kids, don’t impregnate a female with a disease.

    Use Game, find another female. There ARE more of them around ya know.

  19. OP —

    The estimate of $30,000 for pre-implantation diagnosis sounds too high. I can’t say for sure, because you aren’t discussing the nature of her problem. For most diagnosable genetic conditions (there are about 1,800 currently, with that figure rising every week), the “rack rate” for testing runs in the range of $1,000 to $6,000 in the U.S. That’s for testing only; obviously there are major additional costs associated with embryo selection, IVF, and so on.

    A few things to consider. First, if there’s a test and you have good docs, it’s very likely that the results will be near-certain. In other words, you and she will be able to have kids without the burden of this condition, assuming you are financially and ethically on board with the IVF strategy.

    Second, the details of your health insurance becomes very important in your situation. With the screwy state of medical economics in the U.S., “list price” isn’t the same as “contracted price”, i.e. the price that the service provider and your carrier (United, Aetna, etc.) agree to. Then there’s the issue of copays and deductibles, plus the changes that are coming with phased implementation of the Affordable Care Act (things aren’t getting simpler!).

    Third, the technology of diagnosis is improving by leaps and bounds, thanks to rapid advances in DNA sequencing. Testing will be better in two years than it is today, better-still five and then ten years into the future. It will likely be cheaper, too. As far as novel therapies such as replacement organs grown from a person’s stem cells — progress is going to be much slower. This is for technical, safety, regulatory, and economic reasons. Something to keep in mind as you project into the future.

  20. Linanati, as far as the genetic disposition to adoption or mental illness, that does not have to be a problem. I know for a fact that, if there is an addiction gene, I have it. As it is, I do not have any addictions. I have had to watch myself with certain activities (like gaming) to make sure it did not turn into an addiction. If gaming had ever caused problems with other parts of my life – if it ever hurt my loved ones – I would have stopped and gotten any help i needed to do so. I also have mental illness in the form of depression. I’ve gotten help for it from available resources, and it’s no longer a “problem” in my life. I have a wonderful life. I have a job. I am in love with my husband and he is with me. I have great friends.

    I had one good parent and really bad one. Despite being predisposed to addiction and depression, and only having one good parent, I have turned out functional, healthy, and responsible. So if a child is adopted by *two* loving parents, a child can turn out really well!

    On a completely different note, perhaps it’s possible that this man and his fiance can learn to enjoy their life together without children. Some people do. If two people are dedicated to having a good life, and both are reasonably mature, people can learn to find happiness despite missing out on some of the things they wanted. It is very sad, but it turns out sometimes that a couple who want children can’t have any. It can be devastating, but, if you can’t change anything about it, your options then are to be miserable or to seek out the best aspects of the life that you’ve got.

  21. kryssie, you may have overcome a genetic predisposition to both addiction and depression. That doesn’t mean it would happen that way for an adopted child with bad genes. (They used to call it bad blood. “Bad blood will out.”) The odds are against them. Especially so if they’ve suffered abuse and trauma before the state took them from the parents. There’s also a 1 in 4 chance they were abused after the state took custody of them, in foster care.

    Bad genes + parental abuse or neglect + traumatic experiences related to parental bad behavior + possible abuse in foster care = no way would I adopt

    Sure, it’s not the kid’s fault. That doesn’t mean I’m going to rush in to rescue them and put myself through that though. I don’t get the whole adoption thing anyway. It’s almost like some people look at kids like pets. As the slogan goes, “Don’t breed or buy while so many die!” Then you get the people who adopt as many different colors of children as possible. It always makes me wonder, “Is this a vanity collection?”

  22. I like Athol’s response.
    My father lost his wife (my stepmom) of 25 years to cancer. She was only 60. They were best friends and perfect for each other. I know for a fact he would not have traded any of his days with her. In fact, he is such a severe diabetic we all just KNEW he was going to go before she did.

    Regret is a funny thing. I am fairly certain if he let her go, he would often wonder about the “what if” and regret it. But if he chooses her, I doubt after several decades of life and love he would think “Wow, I should have kept shopping.”
    Is there going to be pain? Probably.
    But life is pain. You just have to try to balance it with as much joy as you can find.

  23. holdingallthecards says:

    @OP: are you looking to get married because you are in love or is it simply to breed? Good grief. YOU may get hit by a bus tomorrow or get testicular cancer in 5 years. The future is not written yet, but you know what you feel today. Marry the love of your life. And I am pro-adoption, if you love kids and not simply your own genetic blood line. Also consider that some women will donate their eggs to blend with your sperm, which can then be implanted in your wife’s uterus. Expensive, but a possibility.

  24. Mrs. Pilgrim says:

    Days of Broken Arrows writes: “And IMO when you knowingly sentence a child to an illness, you’re basically bringing someone into the world to suffer and this is a form of narcissism at best or child abuse at worst.”

    Considering that everyone who lives suffers, all parents, by your definition, are narcissistic abusers. Let us not inflict life on these poor children who might occasionally get a broken bone while playing outdoors…

  25. pdwalker says:

    Mrs. Pilgrim,

    Nice Strawman you’ve built there.

    There is a world of difference between the normal bumps and bruises one gets in life to knowingly sentencing a child to a life suffering under a knowable genetic disorder that will have serious implications on their health later in life.

    Your “example” would be like saying, “if I drive a car, I might get into an accident and kill some one, so there is no difference if I get into a car and deliberately run my car into a pedestrian and crush them against a wall, because it could happen by accident”.

    Both arguments are clearly absurd.

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