Having children when there is possibility of inherited genetic illness

[PowersMama]

Hi.

I just found out that my husband’s father died of a genetically inherited illness.There is to date no cure for the illness. There is a 50% chance that my husband also has the defective gene. We already have two children, so if my husband is affected, there is a 50% chance that our children could inherit the disorder.
I wanted to ask you all if you think it is wrong to continue having children. We don’t know for a fact that my husband had the defective gene, so everything might be fine, but we don’t know.

My husband just found out about this medical issue, but his mom knew about it. I’m feeling kind of betrayed that I wasn’t given this information before I married my husband and (especially) had children. The disease we’re dealing with can sometimes have juvenile onset, and I don’t think I could bear watching one or more of my children die. Do you think I had a moral right to this information before marriage?

Thanks for your (name removed by moderator)ut.

 

[ilovekittens]

The simple answer is to have your husband tested for the disease. If he does not have the mutation, then he and your children are fine, and you will not have to worry about any future children. If he has the mutation, then he and you would be able to better prepare for the future, and you would have to very, very carefully consider the issue of future pregnancy since they would be at a 50% risk of the condition. Of course, the simple answer is not that simple; many people in this situation do not want to be tested for the disease; they feel better not knowing and are concerned about insurability, etc. The best thing would be to speak to a physician who is well-acquainted with the disease, or, better yet, a genetic counselor. Most university hospitals have genetic counselors in their pediatric departments.

I think being upset and feeling betrayed about learning this now is very understandable. Still, if your husband did not know at all, you can’t blame him. Did his mother know about (and really understand) the genetic nature of the condition?

Is this Huntington’s disease?

 

[Pug]

I wanted to ask you all if you think it is wrong to continue having children. We don’t know for a fact that my husband had the defective gene, so everything might be fine, but we don’t know.

If the test is not too expensive or dangerous, you could look into having your husband tested. This could clear up much of your concern, and given the level of worry, it could be worth it. But I do understand that he might not want to know, seeing as how you seem to be saying that your husband will die if he has this gene, and that you aren’t talking about being a carrier who does not actually suffer from the disease.

BTW, I’m so sorry you are in this boat. It must be causing so much worry, both for your husband and your two children!

I think you could have more children if you both deem it reasonable. I’m guessing you are worried that it might not be fair to your future children, though. Remember, however, that they can have eternal life if they come into being. For this, it would seem like a gift to them to have life, even if that life is short or hard. It isn’t all bad risk.

You might want to consider what you would advise your children to say if they should consider marriage (I don’t know how old they are). Myself, I’d tell them to explain the potential genetic risk to their future spouse.

 

[gardenswithkids]

I wanted to ask you all if you think it is wrong to continue having children. We don’t know for a fact that my husband had the defective gene, so everything might be fine, but we don’t know.

No, it would not be wrong to continue having children. Even if your husband tested positive for the trait, it would not be wrong, but you and your husband should take the matter to prayer.

…Do you think I had a moral right to this information before marriage?

No. You had no moral right to your deceased FIL’s medical records and medical information. Had your FIL (if he was still alive) or your MIL decided to share the information with her son and with you, that would have been okay, but you did not have a right to it.

 

[ilovekittens]

No, it would not be wrong to continue having children. Even if your husband tested positive for the trait, it would not be wrong, but you and your husband should take the matter to prayer.
No. You had no moral right to your deceased FIL’s medical records and medical information. Had your FIL (if he was still alive) or your MIL decided to share the information with her son and with you, that would have been okay, but you did not have a right to it.

I disagree at least with your second point. I think that, if the father-in-law’s diagnosis and its hereditary nature were known and understood, then the original poster very much had the right to that knowledge before she married. To withhold that information deliberately would be wrong and irresponsible.

 

[promethius]

Hi.

I just found out that my husband’s father died of a genetically inherited illness.There is to date no cure for the illness. There is a 50% chance that my husband also has the defective gene. We already have two children, so if my husband is affected, there is a 50% chance that our children could inherit the disorder.
I wanted to ask you all if you think it is wrong to continue having children. We don’t know for a fact that my husband had the defective gene, so everything might be fine, but we don’t know.

So wait… there’s a 50% chance that your husband has the recessive gene… and a 50% chance your children could receive it from him. That means there’s an overall 75% chance that nothing is going to go wrong at all.

So let’s look at it this way: there’s a 25% chance there might be a problem… and you’re afraid that you’ll see a child with a condition. You “love them” too much to bear that. Rethink your position here. Based on your love for them, and your fear of that 25%, you’re looking at denying those potential children a chance at ANY life at all, normal or otherwise. Don’t do that. Even if they were sick, they at least deserve a chance to live their lives, which you would take from them because you love them. In other words, your position is a paradox that doesn’t actually hold water.

My husband just found out about this medical issue, but his mom knew about it. I’m feeling kind of betrayed that I wasn’t given this information before I married my husband and (especially) had children. The disease we’re dealing with can sometimes have juvenile onset, and I don’t think I could bear watching one or more of my children die. Do you think I had a moral right to this information before marriage?

Thanks for your (name removed by moderator)ut.

No offense, you didn’t have a right to know, just as you shouldn’t deny any potential children. If your husband didn’t know, he couldn’t have told you, and your MIL had no responsibilty to divulge her deceased husbands medical records to you, especially about something so inherently private as GENETICS when we’re talking about a recessive trait here.

(BTW, the recessive trait is most likely a 50% chance that children who inherit it will be carriers, and only a 25% chance that they’ll actually show the trait… namely, there’s only a 12.5% chance of your children being affected)

 

[gardenswithkids]

I disagree at least with your second point. I think that, if the father-in-law’s diagnosis and its hereditary nature were known and understood, then the original poster very much had the right to that knowledge before she married. To withhold that information deliberately would be wrong and irresponsible.

No person has the *right *to the medical records of their potential future in-laws. Parents don’t have to share extrememely personal information with the people who date their children. With adoption, high-tech fertility treatments, and old fashioned infidelity there sometimes may not even be a genetic connection between the father and child. (I’ve heard that last one show up on tests for genetic illness where the testers discover the child could not possibly be biological offspring of the unsuspecting dad.)

And by the way, many diseases may be hereditary in nature, such as heart disease, diabetes or cancer. Fact of life: any child conceived will die someday from something. We may live only a few years or over a hundred years, but we die eventually. Sorry to break the bad news, but we* all* have a terminal condition.

 

[PowersMama]

Thanks for your (name removed by moderator)ut. I’ve been praying over the last couple of days and feel a lot more at peace.

I should clarify that I am talking about Huntington’s. I haven’t done much research about it, but it is my understanding that my husband has a 50% chance of having inherited a defective allele, and if he did inherit it, he will get Huntington’s; there are no mere carriers. And if he did, then my children will also have a 50% chance of getting the disease.

I should also clarify that I am not saying that I don’t want to have children because they will possibly be disabled in some way. What’s frightening to me is that sometimes (I don’t know how often) Huntington’s can begin in childhood rather than in middle age, meaning that my children could die when they are still children. As a mother, that is my nightmare. Can you understand being anxious about that possibility?
Of course I know that anything could happen at any time, but do you understand why having this kind of knowledge is more disturbing?
I’m beginning to realize why God forbids trying to divine the future. Knowing the future can be such a burden, because there will likely be some sorrow in store. I wonder about the wisdom of all of this genetic testing. We don’t plan on doing a test, because we don’t want to feel discouraged about life if the news is bad.

The only reason we even found out about this situation is that some acquaintance from many years ago stopped by my husband’s store and felt the need to share the news that my husband’s uncle is currently dealing with Huntington’s (this is my husband’s biological family, but he hasn’t had much to do with them…long story…). I wish the guy had just kept his mouth shut!

But the good thing about all of this is that I’m going to have to learn to have REAL faith. It’s easy to believe when things are going well, but I’d like to learn to trust God even when life seems scary and uncertain.

Thanks again for all of your responses!

 

[math2vln]

May God bless and grace your family with His peace.
These are very difficult issues. But the truth is that any children
you welcome into this world will be with you and your husband for eternity and have the life that God intended for them to have.
So continue to live in the grace of holy matrimony and welcome any
children God sends to you. I will pray to St. Gianna Motta for you.
Reading her story may help you put these life issues into perspective.
God bless!

 

[ilovekittens]

No person has the *right *to the medical records of their potential future in-laws. .

When the disease is Huntington’s, I think they do. At a minimum, the children of those affected certainly should know, and if that child has the knowledge that he has a 50% chance of developing a devastating neurological illness early in life, he is obligated to inform his possible future spouse. To withold that information would be irresponsible.

 

[ilovekittens]

Good sources of information about HD are at:

www.hdsa.org Look at the “living at risk” section
and
www.wemove.org

 

[gardenswithkids]

… What’s frightening to me is that sometimes (I don’t know how often) Huntington’s can begin in childhood rather than in middle age, meaning that my children could die when they are still children. As a mother, that is my nightmare. Can you understand being anxious about that possibility? Of course I know that anything could happen at any time, but do you understand why having this kind of knowledge is more disturbing?

…

Yes, I absolutely understand about being worried your child might die while young. That’s a heartbreak no parent wants to go through. I worry about car accidents and other injuries that can kill or leave my children severely injured, but we can do something to try to prevent accidents. It seems the only thing we can currently do to prevent genetic illnesses is to prevent people with genetic illness.

I’m beginning to realize why God forbids trying to divine the future. Knowing the future can be such a burden, because there will likely be some sorrow in store. I wonder about the wisdom of all of this genetic testing.

I don’t know what to make of all this genetic testing either. For some people, the knowledge will help them to adjust and plan for what may lie ahead, but for others it only causes fears and worries. Some even use this type of testing to abort children in the womb. At this time it seems we are able to identify some of the genes responsible for illness without doing anything to actually help heal those who carry a disease. There’s an old saying: “a little bit of knowledge is a dangerous thing.”

There’s another old saying: “It is better to have loved and lost than never to have loved at all.” I think we forget that wisdom when we are worried about loosing someone we love to illness. I have a friend whose mother passed away from a similar genetic disease. My friend was the youngest of a large family. She did not inherit the trait, but at least one of her older siblings did. Their parents didn’t know about the gene back then, but if they had known they might not have had my friend for fear of passing on a genetic disease. The same might be said for your husband and current children, so pray and reflect about that as you ponder about future pregnancy.

Prayers for you, your husband and your family.

 

[Pug]

What’s frightening to me is that sometimes (I don’t know how often) Huntington’s can begin in childhood rather than in middle age, meaning that my children could die when they are still children. As a mother, that is my nightmare. Can you understand being anxious about that possibility?
Of course I know that anything could happen at any time, but do you understand why having this kind of knowledge is more disturbing?

I understand both of these. Having a child die would be awful. And sometimes, you just don’t want to know about the future. You’d rather just let it come when it comes. I’m glad you said what you did about faith. God will give you what you need to handle this situation, whatever it turns out to be.

 

[clsulentic]

Thank you so much for this post, I had the same question, and have done a lot of research on teaching of the church. My mother recently died of a disease similar to Parkinsons, which is also spread to 50%. The last 10 years of her life were very painful to watch, and I cannot imagine how painful they were for my mother to live through. We knew about this disease before we got married, and about the odds of it being inherited, but decided to have children. We have two beautiful children, and are very thankful for the ability to raise them, and will also never regret having them, no matter what happens. We lived by the thought that everybody has to die of something, and every life is beautiful.

Right now we’re discerning a third child, and I’m in a moral dilemma. When I told my father we planned our children through NFP, he was irate and actually disowned me. He wrote me out of his and my (not-able-to-speak) mother’s will, stopped sending letters,and will not even say he loves me. His actions were a bit extreme, and I think he was more hurt by seeing his beloved bride of almost thirty years suffer, but I’m wavering on if he is right or not. The church teaches that the only allowed form of contraception is NFP, and that all human life is beautiful and blessed, so to cherish it, that’s where the teaching ends, and discernment starts.

Please, all I ask is you never regret having your children. My father always told me if they knew about this disease, they would have adopted, which is a bit painful! My mother loved her children till the day she died, with all her heart, and we’re better for it! Procreation is one of the strongest things a person can do, and it needs to be taken with discernment, but so does parenting the children you already have. Also, this is very hard on the one with the disease, because guilt to the spouse for the difficulty caused can be an issue. I am discerning whether or not to get tested, it’s not 100% accurate and is quite difficult to get, also, a false positive terrifies me, as does a real positive. This decision is not one I feel like I want to make now, but that day will be a tough one if I do.

I will keep you and your husband in my prayers!

 

[tafan]

6% of cases have onset before 21. So based on a 1.5% probability you are afraid of having children. Or perhaps based on a 25% probablility of your child having the disease in his 40s or 50s, you are not going to have children? And those odds discount a long period of time for medical advances to help with the disease.

Ok I’ll say it. Life is worth a lot to me. IMO, those odds and age ranges are not even a serious reason for practicing NFP, for me at least. Its a tough disease, but if I knew I was going to develope it 5 years from now, would I have wanted to not experience my previous 45 years? No way.

 

[tafan]

…The disease we’re dealing with can sometimes have juvenile onset, and I don’t think I could bear watching one or more of my children die. .

Well, I don’t think I could bear one of my kids dying in a car wreck or any other way; but I am really, really glad I have taken that risk.