Dear Prudence: Huntington's disease is tearing my family apart.

Advice on manners and morals.
Sept. 15 2011 7:12 AM

Deadly Family Secret

My mother-in-law hid a life-threatening condition that could strike my child. How can I forgive her?

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Dear Prudie,
My husband and I just had a beautiful baby boy. He's doing well but was premature, and I had a complicated pregnancy that required months of bed rest. A week after our son's birth, we learned devastating news: My husband's mother was diagnosed with Huntington's disease. That means my husband's risk of inheriting this horrible genetic disease, and eventually becoming gravely ill and dying from it, is 50/50. If my husband inherited it, our baby's risk also is 50/50. I'm heartbroken, afraid, still hormonal, and furious. It is obvious my mother-in-law has known something about this for more than a decade. Her own mother and several of her aunts died of it. My mother-in-law says she didn't really know it was HD; she just thought it was something old people get. There's evidence she's lying about her ignorance, and I think she did it because she wanted grandchildren. I feel I had a right to know of the existence of this genetic disease before my husband and I conceived a child. I should have known before we married! I still would have married my husband, but I would not have had a child without genetic counseling. (We do have an appointment with a genetic counselor in a few weeks.) My husband is angry with his mother, but not as much as I am, and this is becoming a source of argument between us at a time we need to be supporting each other. My questions are: Can I limit how much she sees the baby? She's visited a lot, but seeing her makes me sick. How much can I vent to my husband over this? And what are my obligations to other family members? For example, one of my husband's cousins is very recently pregnant and they might want to get testing to see if the fetus is at risk.

—So Devastated

Dear Devastated,
I understand why you feel this way. The long, slow brain destruction caused by Huntington's disease is particularly cruel, and adding to the misery is that there is no effective treatment. Of course, you were entitled to full disclosure of whatever your mother-in-law knew, because now you are facing a possibly radically changed future. But as righteous as your anger is, for the sake of your health, your child, and your marriage, you have to try to let go of your rage and start working as a team with your husband to decide what to do now. I spoke to Jennifer Williamson-Catania, a genetic counselor at the Huntington's Disease Center of Excellence at Columbia University. As far as the pregnant cousin is concerned, she made the same point you did: that adults making reproductive decisions should have crucial information. She suggested you contact the cousin, explain the recent diagnosis of your mother-in-law, say you are going for genetic counseling and she might want to do the same. When that's done, please try to slow down. Now that you know HD is in your husband's family, you need to be gathering information and weighing what you learn. Seeing a genetic counselor is an excellent idea, one who specializes in HD would be particularly helpful and should counsel you not to jump into testing. According to this paper on the excellent website of the Huntington's Disease Society of America, only about 20 percent of adults at risk for the illness choose to find out if they are carriers. The society's guidelines for testing point out that in the absence of neurological symptoms, there is almost never a reason to test a young person for the disease, which tends to strike in middle age. Your husband may decide to be in that 20 percent as you contemplate having more children, but there is no rush about making that choice.

The society has links to support groups, and you should contact one. It is crucial for you to be able to vent your anger and talk to people who understand what you're going through. Ask them for recommendations for therapists. You and your husband need to be a team, and that means being able to talk out what you're facing, but you want to limit your use of him as a backboard for your distress. You two can decide to disagree about some things. You may not feel able to be in the same room with your mother-in-law for a long while. But don't prevent her from seeing her grandchild. When she visits, take a nap or a walk. It's not rare for people with HD in the family to have been misdiagnosed or given erroneous medical information. Perhaps that, and deep-running secrecy and denial in your husband's family, allowed your mother-in-law to pretend people were suffering from "old age" and your husband not to question what was killing his relatives. Understanding this may help you to find your way to some compassion for this slowly dying woman. Most of all, take time to heal from your difficult pregnancy and revel in the joyful new life you and your husband have created.

—Prudie

Dear Prudence: Hands Off My Long Hair

Dear Prudence,
Two months before I asked my wife to marry me, I cheated on her with a woman I met through a hookup website. This woman and I met only once, engaged in oral sex, and I never saw her again. I was consumed with guilt and confusion over my double life and wondered if I would always be a liar and a cheat. At the same time, I was in love with my soon-to-be fiancee, and I made a decision to keep my mouth shut and go ahead with my plans to propose. We've been married now for nearly two years, and most of the time I'm happy. My wife is happy. I have resolved to never do anything like that again. And yet I still occasionally experience bouts of guilt and emotional pain, not to mention a fear that what I did will somehow be uncovered. I've convinced myself that keeping the experience a secret is best. But is that the right choice, or am I just making excuses so I don't have to do the right thing?

—Guilty and Tired of It

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Dear Guilty,
It would have been best if you'd kept your mouth shut and your pants zipped, but excuse me while I laugh at your idea of a double life. This one-time event has messed with your head, but since you don't have the life expectancy of a fruit fly, a double life it isn't. Now that you've confessed this brief, sordid encounter, I hope you can start to feel better. Let's go over the particulars. You weren't even engaged to your girlfriend. There is virtually no chance this woman is going to come back into your life. You hated what you did and have never repeated it. Actually, deciding to have a little sexual adventure before you committed permanently probably has helped adultery-proof your marriage. The most destructive thing you're now doing is letting this episode eat away at you. Surely, there are times when your wife wonders why you're so sad and distracted. You didn't get an infection from your little frolic, so please stop letting it infect your marriage.

—Prudie

Dear Prudie,
I graduated from high school near the top of my class, with a grade point average over 3.9 and a weighted GPA over 4.6. I completed 28 college credits in high school and scored a perfect 800 on the math section of the SAT. Now that I'm out of college and in the working world, I no longer know what I want to do in life. Most of the people I know are considerably more successful than I am. I feel disappointed because I didn't graduate from an Ivy League school or end up at a Fortune 500 company. I feel slightly embarrassed every time my friends ask me what I do. How do I learn to love my current job and stop fantasizing about what "could have been"? Staring at the high unemployment numbers hasn't helped.

—Regretful (Former) Tiger Cub

Dear Tiger,
What "could have been"? You're just starting out, so your life is still in the "hasn't happened yet" phase! I agree that launching a career in this economy is a challenge for your entire generation. But an important transition you must make is to stop being obsessed with measurements of your worth that no longer apply. Once you get out of school, the rest of life rarely comes with such clear appraisals as a weighted GPA. It sounds as if, in the way of tiger cubs, you were drilled that your value comes from being labeled the best and collecting memberships in prestigious organizations. But what's going to matter from now on more than your SATs is your drive, flexibility, creativity, and ability to work in groups and to learn from your mistakes. You have a job, so congratulations. Get everything you can out of it and think of it as a pit stop, not a final destination. Although you're living through a recession, you may have fallen into a depression. If so, appropriate treatment could help you realize you're only at the beginning of your big adventure.

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