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AIBU?

Aibu? husband and genetic testing.

127 replies

Deemail · 19/08/2013 23:09

My dh is at risk (50%) of inheriting a debilitating illness, if he is a gene carrier our dc will have the same risk. It is a terrible terrible illness which usually strikes between 30-45 but can be sooner or later, there is no preventative, cure or effective treatment.

We didn't find out that he was at risk until after we had children. Obviously when we did find out it was a huge shock. Dh felt he wasn't able for genetic testing to find out whether or not he has the gene mutation. I would have been keen to find out but understood that this wasn't something he was yet able for. We decided to wait a few years and agreed that at some point we would have to know for sure for the childrens sake, (if the illness had not already started).
It has now been a lot longer than the few years we said. The kids are teenagers and I feel we need to know for their sake. We mention the illness and family members having it and it been inherited, from time to time but they really do not understand the signifigance of it.

Aibu insisting dh has the test so we know where we stand and also where children stand. He says he wants to have it but has said that for years and has never done anything about it.
Im scared if I push him into it and it is a positive result he will blame me and also give up.. Im scared if he doesn't have it the dc will resent us in time to come for not been more honest about what lies in the future for their father and possibly themselves.

OP posts:

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thatwasadaftidea · 19/08/2013 23:55

I'm 35. the kids are under 10.

I just found out i'm pregnant with my 3rd. so naturally I think about HD and try to figure out what age the kids will be should symptoms start for me.

I'm happy to chat with you about it. Actually mumsnet is a good support I've found. The HD forums focus on the disease and symptoms whereas mumsnet allows you to get the support as a parent.

Alisvolatpropiis · 19/08/2013 23:57

Dee

Maybe go to counselling and see how you feel afterward it. They can impartially talk you both through your worries about testing and how to move forward. Then your decision can be made together, with clear heads.

I really feel for you and wish you all the best for your futures.

thatwasadaftidea · 19/08/2013 23:57

i have to go to bed now, take care x

saintlyjimjams · 20/08/2013 00:00

Gosh how difficult. HD is horrible. Has he had counselling? Can you & him have counselling? I can completely understand why he doesn't want to know (esp because iirc the test for HD not only tells you you have it but can give you a sort of time frame as to when you are likely to develop the disease - that's pretty heavy duty information). But I can also see why you do want to know.

No rights or wrongs, just very difficult decisions.

whiteandyellowiris · 20/08/2013 00:00

Why find out and possibly ruin your life.now.

I wouldn't want to know I.dontthink

ProtegeMoi · 20/08/2013 00:02

I have huntingtons in my family although not my parents, its an awful disease. My cousin died 4 years ago due to at the age of 24. It's early onset in our family.

Totally personal decision but my cousin insisted on being tested, She couldn't have children knowing what she could inflict on them, obviously not the same for you but depending on your children's age it may affect their decision to have children so they do deserve to know. Have you asked them if they want to know? Do they understand they may be at risk?

Deemail · 20/08/2013 00:09

I really appreciate everyone taking the time to reply. This thread alone has helped me realise the main reason I want dh to take the test is to hopefully spare our children from going through this or in the worst case scenario to help them see that while what lies ahead is not going to be good that life is for living now and that HD didn't stop us from living and enjoying our life.

congrats thatwasadaftidea, that's great news. I also find the forums overwhealming. I can see they are fantastic for anyone who is suffering from the illness and their family but for someone like my dh and you they can be overwhealming.

I think we will start with counselling and make a more informed decision from there. We did speak to a fantastic person in the HD society in the beginning, She was amazing and speaking with her allowed us to compartmentalise HD and enjoy life, something I had never thought I would be able to do again.

OP posts:

Deemail · 20/08/2013 00:16

protegemoi, I am sorry to hear about your cousin that is so sad and terrible for you to watch. It largely goes over the dcs heads. Their grandparent is late 70s now and symptoms were always mild, it is the same with their aunt and uncle who have it, they are not "typical" cases and are not bedridden and live a reasonable quality of life. My dc do not know dhs cousins who are badly effected so wouldn't realise how bad it can get. I honestly think when I mention Huntingtons they have no concept of how bad it is, I think me mentioning the grandparent having huntingtons is equal to me mentioning the grandparent who has arthritis, (in their heads).

I am off to bed now but thanks again everyone, its hard not been able to talk about it much in real life and this thread has helped me understand how I feel better.

OP posts:

LivingProof · 20/08/2013 00:20

Another angle to consider, although you don't mention the age of your DC so it may not yet be an issue, is what happens when they become sexually active; if, heaven forbid, they carry the gene and get pregnant/get somebody pregnant, then other people have been unwittingly involved. It is not fair to keep the knowledge of the risk to yourself when it can affect so many lives.

Sorry if that sounds harsh, but I think there's a very good argument for taking responsibility and making sure those concerned are able to make informed decisions.

parachutesarefab · 20/08/2013 00:23

Many sympathies, what a horrible situation.

I don't think you can force your DH to take the test. And I can understand why he doesn't want to - while he hasn't taken the test, he hasn't got a diagnosis, so hasn't got HD. Yes, a negative result would be fantastic, but a positive one could be devastating.

You ask whether you should insist he is tested, so that you know where you and your children stand. That is great if he tests negative, but if he tests positive then your children still don't know where they stand, and their risk has increased from 25% to 50%.

I agree with the suggestions of counselling. And being open with your DC.

Really hope it works out for the best for your family.

Viviennemary · 20/08/2013 00:30

I don't think this is quite a question of being reasonable or not being reasonable. I think I would feel the same as you in your situation. But on the other hand your DH doesn't want the test. I think it is one of these times when each person must make the decision that they personally can live with and that might not be the same for everyone.

wannaBe · 20/08/2013 00:41

I don't agree with this idea that the children have "a right to know." the only thing they have a right to know is that there is a genetic condition in their family and that there is a chance they are carriers, which, according to the op, they already know. After that they have the right to make their own decisions as to whether they do or don't have the test.

Nobody has the right to force anyone to find out that they will develop a progressively debilitating disease at some point in their life. If someone told you that you should find out how you're going to die because others had a right to know would you be comfortable with that? his body his choice.

Your dh may have huntingtons he may not. Equally you or he could develop any other kind of debilitating illness and die from that, or be hit by a truck walking down the road. I know that one of the reasons why you want to know is because you're hoping for a diagnosis, but if you don't get the one you're hoping for how will that make you feel? it will just make you dread every move your dh makes and then project that on to your children, and who does that benefit?

It's his decision, nobody else's. Equally it is your children's decision, and equally you may have to live with the reality that they too do not wish to find out.

LivingProof · 20/08/2013 01:08

wannaBe, are you saying that at-risk people who want to know should refrain from being tested themselves, because a positive result will mean their parent's status will then be known? What about 'their body, their choice'?

wannaBe · 20/08/2013 01:47

no, what I'm saying is that the dh shouldn't be put under pressure to be tested because people say the children have a right to know whether their father has hd or not.

The children have a right to know that they are at risk of developing a genetic illness at some oint in middle age, after that they have the right to decide for themselves whether they are tested, equally though I would say that the father then has a right to not be told of their results.

But the op may have to face the possibility that as well as her dh, her children may choose not to be tested either...

DropYourSword · 20/08/2013 03:31

I guess you have to weigh up the benefits of testing. OK, so you'd know, but what could you do with that information.

Really, it's his choice whether he gets tested for himself. And it's your children's choice if they get tested as and when they are old enough. Granted if they test positive then your husband gets a result to a test he didn't want to take, but it's really their own choice. BUT, everyone should really understand their reasons for wanting to get tested... if there is no treatment done people may choose to prefer not to know, while others do want to. No easy answers here.

chickieno1 · 20/08/2013 05:01

I think your husband initially and then both of you together need specialist genetic counselling to start off with. Then hopefully he/you can make a fully informed decision.

Very difficult situation, sorry no easy answers here

Morgause · 20/08/2013 05:11

What a very sad situation for all of you.

A friend of DS2 has been diagnosed with this and hadn't been told he was at risk. He is very angry with his DM for not telling the truth about his father's early death. They separated when he was too young to know what was going on.

He has 2 young DCs who would never have been born if he'd known the risk. He and his DW are struggling with whether the children should be tested to prevent another generation suffering from this awful disease.

Please make sure your children understand the risk before they think about having children themselves.

So sorry you are having to go through this.

waltzingmathilda · 20/08/2013 06:41

If the children are teenagers now, then it can't be that long until they are 18 and can make informed decisions for themselves? By which time they should have been given all the information they need to make their own decisions.

Your DH made the decision not to get tested why would you take that choice away from your children?

Thumbwitch · 20/08/2013 07:01

If the children know there is HD in the family and that it is genetic, and therefore there is a possibility that their father could be carrying it, and so could they, then that is probably all that should be done at this stage.

Your DH doesn't want to be tested - that's his prerogative. Your DC need to make their own decision, and need to be allowed to make their own decision when they are autonomous adults. They of course do not need to tell anyone the results, but they must be allowed to choose for themselves.

Particularly I would say that they should be allowed to choose prior to committing to having children. Some people are ok to take the risk of passing on the genes - after all, it's half and half - and others absolutely wouldn't want to. They have to be able to choose their path.

If I had HD or similar in my family and my parents kept it from me until it was too late, I would be beyond furious! I may still have chosen to have DC, even with the attendant risks, but I would have infinitely preferred to have made an informed choice, not a blind one.

I couldn't quite work out if you discuss it in your family or not - I know you said your DH doesn't like to have it talked about - if your DC don't know about it, then they should.

ZillionChocolate · 20/08/2013 07:58

I think you should look into counselling and encourage DH to go to it. I don't think you can insist on testing now. Maybe you could have insisted before deciding whether to have children. When you don't know, you should make any major financial etc decisions on the worst case scenario.

McNewPants2013 · 20/08/2013 08:15

I would want him to find out ASAP, so you can plan for the future.

If he has this genetic condition at least you can research it and start saving if he can't work or start doing things that if he is unable to move.

Do you have a mortgage that will be difficult to pay if he is unable to work.

Would you need to be his carer and possible give up work.

Trills · 20/08/2013 08:25

I think it's his choice to not find out.

I would always want to find out (I'm a carrier of a different genetic disease), and I can't imagine ever not wanting to find out, but I still believe that it is his choice.

You are not unreasonable to want to know, not at all. But you would be unreasonable to push the issue or to try to force him or make him feel guilty about not finding out.

If you have spoken to your children about the possibilities then I don't think that he is necessarily harming them by not finding out.

As has already been said, when they are 18 they can make their own decisions to find out for themselves or not.

AT that point, if they chose to find out, if your DH decided to stick his fingers in his ears and say "lalala don't tell me I don't want to know", then he would be being unreasonable.

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beepoff · 20/08/2013 08:27

I know how you feel sort of, my DH's father has a generic disease. DH was going to get tested but as we were expecting DS he decided not to.

It wouldn't change the future, so what difference would it really make? We know the potential risk is there for our children and when the time comes will tell them and have them screened etc for symptoms.

I think it's better to know you may or may not get x, rather than you WILL get x.

Trills · 20/08/2013 08:27

Can we check - do the children know anything at all?

How old are they? You say teenagers. I think that they really should be told that the disease is in the family, and what it means.

beepoff · 20/08/2013 08:37

Genetic not generic!

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