tricky family medical (genetic) matter

[questionandanswer]

Have NC for this. I wondered if anyone has any thoughts on something that caused a family argument this Xmas. It is a medical matter. I will just give the essential info, not to make it too specific and technical, or long. Basically:

I have a DH, who has two adult daughters, my DSDs. We also have a 12yo DS together. Not long ago DH and the DSDs found out from family that DH's sister (from whom he is estranged) has been diagnosed as having a genetic condition. The condition does not affect everyday life in any way but does mean that the sufferer needs to make doctors aware of it if they have a general anaesthetic.The condition can be potentially fatal if you have a general anaesthetic using certain agents, but if the doctors know about it, alternative agents can be used and all is fine.

It is of course possible to just tell doctors about the possibility of the condition at the time of an anaesthetic, and they can use the alternative agent just in case (this happened recently when DS had to have a GA). However, the concern would be if the person is not in a position to give this history, in an accident and unconscious, say, with no family around in time (also DS is only 12 and is autistic and probably unlikely to give the history correctly even if he is conscious). So I certainly want to know if DS has it, and the DSDs want to know if they have it. If they do they would then wear a medic alert tag.

The catch is that. although some degree of genetic testing can be done, the only definitive test is a muscle biopsy, which a fairly invasive and, I believe, quite painful, test. Now, the way the conditiion is inherited, if DH was to test negative, the kids could not have it and so would be spared the testing and any further concern. So the obvious first step is for DH to see a doctor and ask for testing.

The problem is that DH is refusing. He says he will see a doctor to discuss the situation but no way will he have the biopsy. This means that 12yo DS is going to have to have the test (as even if the DSDs test and are negtaive. DS could still have it).

DH became verbally abusive and started shouting at the dining table at Christmas when i suggested he was being selfish. This was in front of the DSDs boyfriends, one of whom we only know a little and one of whom we were meeting for the first time. This was very embarrassing for me. And we are no further forward with finding out the genetic status of any of them.

I dont think IABU (unless you think I should just solve it by getting everyone medic alert tags anyway, but I don't see why DS should have to wear one if he does not have the condition).

Why won’t he?
If I could have a test instead of my child having one then I would do it with no questions

Isn’t he a peach? I’m guessing this is just one of many incidents where he behaves like a selfish arsehole.

He is scared of the pain, I think, although as he refuses to discuss it apart from saying (shouting aggressively and storming out of the house at Xmas dinner in front of the whole family) he will never agree to have the test, I don't really know exactly why.

I don’t understand why your DH wouldn’t have the test. However, you say he is willing to talk to a doctor about the situation, and this discussion obviously hasn’t occurred yet. It seems strange to have argued about this before he’s even discussed it with the doctor first.
And yeah, seems like the sensible thing to do would be for your DS to wear a medical alert band as a precaution until you know for sure.

Who brought it up over dinner?

Because that was not the place to discuss it obviously. Unless the person who started the conversation was hoping for the reaction which followed.

Genetic testing is a minefield. I have no idea about this kind of test or condition but have a couple of similar things in my family/friends. Some people are terrified of finding they have the genes for Huntingtons or similar, even without family history. In a way I wouldn’t have predicted they feel that would be their life over, no point in getting married or trying for a promotion or anything.
Also these kinds of tests can open old wounds or reveal secrets about parentage as well. Not suggesting this is the case obviously but there can be an element of paranoia. One family I know 2 siblings have the gene 1 doesn’t abs rhe 1 that doesn’t genuinely questioned whether her dad was her dad (yes, they each had a 1 in 4 chance).
All that being said I would get the test myself to save my son (having been in a very similar position but couldn’t).

He is not normally selfish at all. That is why this is such a shock to me. He would normally do anything for his children.

I am thinking that probably when it gets to the actual point of us driving DS to the hospital to have a painful test which could potentially be avoided by his father not being an idiot, he may relent. If he does not though, I am not sure how I will feel about him. (And how it may affect his relationships with his daughters, who adore their baby brother).

My DH has ad a muscle biopsy. He didn't find it particularly painful.

It is unbelievably selfish of your DH not to agree to do that for the sake of his kids.

@Unsuremover Huntingdon is completely different to this.

@questionandanswer

His reaction makes me think he might already know he has it and doesn’t want you to know he hid it from you and his children.

I’d get your son tested and reconsider whether I wanted to be married to a selfish prick like him.

The reason why DH doesn't want the test is kind of irrelevant. He has his reasons I assume.

He should not have shouted at you (especially in front of guests) but equally you calling him selfish in front of all your visitors was rather mean so I can sort of understand why he got defensive and argumentative.

Your DS and DSDs do not need to undertake the test if they don't want it. It can surely be documented on their medical record that they are possible carriers of the genetic defect.

I know a guy who refuses to be tested for huntingtons and refuses to even tell their dc of the genetic link. Complete selfishness.

Huntington's

Fucking autocorrect

Muscle biopsies aren't especially painful - maybe speaking to the doctor will allay your DH's fears.
His reaction seems disproportionate

Christmas meal seems a very odd time to have gone for an in depth discussion about it, but sounds as if he is being unreasonable in not having the test.
You don't say what the condition is, the extent to which you have researched it (as in how it is transmitted, probabilities of partner/children having it) - maybe a conversation with his GP to find out more would be useful next step.

The more arguments you have before he has done that, the less likely he is to approach it with an open mind.

I cannot understand why this topic came up around the dinner table, on Xmas day, in front of people you barely know.

He is a selfish arse to want x3 people to have a test when he could have it and avoid all 3 of his own children going through it.

However there is a time and place to have this conversation and over Christmas dinner isn't that time.

Weird thing to bring up over Xmas Dinner.
You can't make someone have a test so maybe just get your son tested.

Their body, their choice applies to everyone. He is well within his rights to refuse, and nobody should pressure him into it. If he tested positive, would all the children be tested anyway?

Saying that, I don't agree with his decision. But why was it being discussed at the dinner table in the first place? Although again, his reaction was u reasonable

I think you’re massively under-estimating the impact that the thought of genetic testing can have on a person. Plus discussing it at Christmas in a group setting was a terrible thing to do, I’m not surprised he possibly felt ambushed and stormed out (not saying it was the right reaction, just that I can imagine how he may have felt).

It can be a total minefield to navigate through these things, cut him some slack and give him time to process it all.

I don't think Christmas dinner was the right occasion for that conversation. He should discuss it with a clinician, and in my opinion it is always the individual's choice whether they choose to undergo invasive testing.

Is your dh always a dick?

The tests would be specific for this condition, which is not in any way damgerous outside of the situation of having a GA, and only dangerous in the situation if the doctors don't know about it. (So no chance of finding some devastating information like Huntingtons etc).

Unfortunately the genetic test, which indicative, is not definitive, and if the genetic test shows a possiblity of the condition, the muscle bx has to be done to be sure.

The matter was brought up over the Xmas table by the DSDs, as it was the only time were have all been together and we won't all see each other again for some time (the DSDs live in different countries from each other and from us). I then just said I would be making an appointment in the new year for DH to see a specialist in the condition, and that the testing could be discussed, and he hit the roof. I was completely taken aback.

It won't be that bad. Your DS will be fine if he has the biopsy.

OK, the fully grown man acting like a four year old is crap, but you will know for sure where your son is concerned. The GP might straighten him out and convince him to grow up have the biopsy himself, anyhow. But he obviously cannot be relied upon, so you'll need to find out via your son.

As it's something like malignant hyperthermia, it's not something that can be ignored, after all.

I'd point out that as his legal next of kin you're the person in a position to consent if he's unconscious or unable to communicate in a medical situation (not really...well....). Tell him to grow up and talk to the Dr about getting it done because it's for his DCs sake.

Is the condition MH? It's super rare, but anaesthetists and ODPs are really aware of the condition, and the signs and symptoms. I'd recommend your DC tell the anaesthetist if they ever go for surgery whether your DH tests positive for it or not. It's a really simple change around, and your DC will be monitored really really closely for any signs of it. Plus it'll mean they'll pretty much always go first on an operating list!

As for your DH not wanting to test, I have no advice, sorry.

@TheCanyon

I know a guy who refuses to be tested for huntingtons and refuses to even tell their dc of the genetic link. Complete selfishness.

Woah! I can't believe I've just read that @TheCanyon