Having Children With A Man With A Hereditary Illness

June 7, 2018  |  
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A dear friend of mine is married to a man with a chronic and hereditary illness. They’re in and out of the hospital every few months when he has flare-ups. Traveling is quite difficult for them and they have to make sure a lot of systems are in place before they can go anywhere in case her partner has an episode of symptoms. I told her recently how impressed I am with how well she handles it, how strong she is for him, and how great she is at rolling with the punches (of which there are many) that come with his illness. She told me that, by now, she was used to it, but there was one thing she couldn’t quite wrap her head around: how they are going to have children one day. They want to. But his condition is hereditary and very difficult to live with. Here are the realities of wanting to have children with a man with a hereditary illness.

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He sometimes says you should choose someone else

Sometimes my friend’s partner feels so guilty about the way his illness affects her prospects of having children that he says things like, “You should just go be with somebody else.”

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You hate when he says that

My partner hates when her husband says that. She hopes he knows that there isn’t anyone else for her, and that she’d rather be with him and not have children than be with anyone else and have children.

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You research the chances

My friend spends a lot of hours researching the likelihood that her child would get the father’s illness. She’s basically an expert on the subject now, with stacks of books and articles about it on her desk.

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But no research can prevent it

At the end of the day, no amount of research can change destiny. Even if the risk is relatively small that the child would get the disease, if she did get it, the parents may never forgive themselves.

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You feel terrible knowingly passing it on

I know that sometimes, my friend and her husband say that they feel having kids would be downright irresponsible if they know they could pass on such a difficult condition. But then again, they would be wonderful parents, so it’s hard to agree that it would ever be wrong for them to procreate.

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Your parents hint you should choose someone else

They don’t come right out and say it, but my friend’s parents sometimes make comments like, “Life with someone with this condition won’t be easy…” and she knows what they’re trying to say. It’s infuriating. What do they want her to do? Leave the man she loves? Really?

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Adoption is on the table

The topic of adoption comes up from time to time. But, that’s a huge decision and one that, should they make it, would make my friend feel like she’d given up on the idea of having her own child. It’s just a hard concept to digest.

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Adoption tends to upset the in-laws

The in-laws on all sides become noticeably angry when my friend and her partner mention the possibility of adoption. They want blood grandchildren. They feel like adoption would be some sort of an affront to the family.

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His parents will respect your decision

My friend’s in-laws are total angels when it comes to her decision to possibly not have children. They get it. They had a child (my friend’s husband) with this hereditary illness. They know how hard it is.

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But his parents are also heartbroken

But my friend’s in-laws can’t help but show their true feelings, which are that they’d be very sad not to see grandchildren. The thought of a grandchild with this disease, however, is also heartbreaking. It’s tough all around.

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Your partner must confess how bad it is

My friend’s husband has always tried to assure her (so she felt better) that his condition really wasn’t that bad. But that’s when it was just pertaining to him. When she broached the topic of having kids, he had to come out and tell her the truth: his condition is actually very difficult to live with, and she needs to know that before possibly procreating.

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You fear it will affect insurance

Of course there are concerns about insurance. A recent ruling states that no insurance company can deny a claim related to a genetic illness but, what of applying for new plans as the child gets older? The rates will naturally be higher.

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You fear they’d struggle to be independent

My friend has seen how hard it is for her partner to be too far from his family. They live up the street from her in-laws, in fact. He needs all the support he can get when his symptoms flare up. And, my friend understands that if she had a child with the condition, caring for him would be a life-long task, too.

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And you fear your child would be mad at you

My friend and her husband naturally worry that if they had a child who had the condition, their child would forever resent them. They fear he’d wonder why they brought him into this world if they knew he might suffer like this.

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It’s a very sensitive conversation

Even though the subject requires a lot of communication, it’s one of the hardest ones to talk about. My friend always worries that, by stating she may not want to have kids, she is somehow rejecting her partner.

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