AIBU to feel angry husband downplayed rare condition and life expectancy?

[Anonymous1899]

He got diagnosed with a very rare medical condition when he was a baby. He had to have surgeries because of this when he was a kid. On the outside he seems perfectly fine and you couldn't tell her has anything 'wrong' with him. But apparently his medical condition reduces his life expectancy in the long term. People with this condition have survived only in to their 40s and 50s
Medical intervention for this procedure is quite new and only started in the 80s so there are no statistics or data on people who have live longer than 40-50 years old.

When we got married my husband did tell me the name of the medical condition, he did tell me about his surgeries and he seems absolutely fine on a day to day basis. Whenever we have talked about it, he says 'I'll be fine'

I did google his condition in the past and while it did seem life threatening, seeing as my husband looks 'fine' on the outside I didn't really dwell on it

However what threw me off is that he got refused life insurance in the country we live in when trying to purchase a house, as the insurers basically don't believe he will life for another 30 years (we are in our early 30s)

I did more research on his condition and found out that the surgeries he had are only 'palliative' and not a cure. Meaning that his condition will most likely worsen with age. The more I read about it, the more I realize this condition is worse than I thought and I don't think my husband shared enough with me on this

He's the one diagnosed with it, he's the one who's been through the surgeries and had all the medical appointments, he should have known more about his condition right? Should he not have told me that he might have a reduced life expectancy before we got married and emphasized on this point so that I can make an informed decision about my future??

We have kids now and im so angry at him for putting my kids and my future in danger. Is this selfish of him? Or am I over reacting.

I do agree that no one really knows what the outcome looks like for people with this condition. It's more like a 'wait and watch' situation but shouldn't he have told me more about all of this?

When we have talked about this in the past he did genuinely seem lost about the medical jargon of his condition as was I.

However, when the insurers refused him life insurance, he asked me ' do you feel like I haven't told you enough about my condition before we got married?'
I said yes and he said its because he thinks he was in denial about his condition.

Do you think he was consciously witholding information from me? I feel fooled.

Also, before you waste your time in the future, cursing is allowed on MN. This isn’t Netmums. Name calling is not allowed but I didn’t name call, so I would be a bit surprised if my comment was deleted. As for your comment itself being a bit cunty, because that’s what I said - I suspect MNHQ would secretly agree.

There is no data... what did you expect him to do? Make it up? I'm genuinely confused

Is is Hypoplastic left heart syndrome OP?

A friend of mine was born with this and had the surgery. I don’t think you can blame him when you knew he had it. You could have both consulted a medical professional.

it is done now and I think you need to move on with your life and away from this thread.

A brief flick through most threads will tell you that language isn’t policed on MN.

Well someone has to focus on what happens to OP and her kids should the worst happen, because her DH clearly doesn’t give a shit does he ?

Do you think maybe his parents told him something optimistic so he could cope better with it and he genuinely believed he was going to be fine because he had surgery?

I think this needs a proper conversation between you two to get to the bottom of exactly what he knew, when he knew it and how that compared to what he communicated to you.

Its hard for us to know if you’ve been misled because the basis of that would be an intention to mislead you on the part of your DH and there’s no evidence of that. He could be innocently in denial, misinformed or clueless here

How do you reach the conclusion that her DH doesn’t give a shit about his wife and kids?? Because he’s selfish enough to be born with a life limiting illness?!

Of course he gives a shit, what do you suggest he does?

He doesn't give a shit? 😂 What a big jump you made to that conclusion

You do realise that a) he didn't ask to be born with this illness and b) her cannot do anything about it... he can't know more than the medical professionals who have no data

He told you what he had. You made the choice. If it helps, various medics told me, due to a condition I have, that I wouldn’t make it past the Millennium - yet here I am, 26 years later.👍

Carpe Diem.

Give over.

Everyone with children should should have a plan in place in case 'the worst happens'

Is the something else what you're actually annoyed about OP?

Because his health condition, he told you about it and you saw it could be life threatening and you buried your head in the sand because he looked o.k. So is it that you now understanding what it means is more of a last straw/proof he hides important stuff from you, than it really being about this?

You're free not to answer of course and I might be totally wrong.

Indeed. Doesn't everyone have a conversation about plans for if the worst happens when you have children. That's pretty normal.

I must say I was surprised to read the update on the suspected life expectancy though. It's not even that unreasonably young so all the talk about the children losing their father young seems quite melodramatic.

Agree. But knowing that it’s a distinct possibility changes things. As does the probability that life insurance is going to be difficult to obtain or unaffordable. Maybe OP should have researched this sooner, but that doesn’t excuse her DH from not taking responsibility for his own health and making sure he knew as much as possible so any future partner could make as informed a decision as possible.

But even the OP has repeatedly says... there is no more information to know. He can research til the cows come home, but there are no known results as prior to his lifetime the operations he had didn't exist. He was knew of the early adopters of the surgery. Medics don't know anymore than he or the OP know.

Well clearly the insurance company have data because they’ve refused him life insurance. He didn’t bother to research his condition, minimised it to OP and clearly didn’t give any thought as to what would happen to her and his children if the worst happened. The wake up call was the life insurance refusal, and it shouldn’t have been.

Life insurance won't give insurance because the data is unknown.

Matter of opinion I guess but I completely disagree.... he told the OP all he knows. He literally cannot make things up because then she'd be complaining he lied about that.

They will refuse insurance due to lack of data. In fact no evidence of the ratio of success of the surgery he had is a greater risk than having any information would be. They could assume all people diagnosed will die earlier than the end of the mortgage term OP wanted, from this disease.

@Anonymous1899 What information do you have now, that you didn't have before you married, that makes you think he will die before his 70s/80s? There are no survivors of the treatment who are anywhere near that age, so there is no data.

And in what sense is the treatment 'not a cure', if he and all the older survivors are currently in good health?

Are they all being monitored?

Love the idea that insurance companies have detailed medical prognoses for each case rather than just blanketly lumping them into categories. My brother had a particular injury that was completely repaired as multiple surgeons have reiterated, yet insurance companies just go "ugh too risky".

So everyone born with this condition before the 80s is dead already?

How old is your DH?

He must be absolutely terrified.

I’m really confused why you’ve come to the conclusion he won’t have a normal or near normal life expectancy…

If people with the condition would have usually died shortly after birth before the surgery started in the 80s but now they’re all alive half a century later (which is a pretty transformational medical advancement!) why would they all suddenly die in the near future rather than living to old age and just dying of something else..?

I'm also really confused about why she thinks he won't live to his 70 or 80s it's all speculative and nothing indicates he will not live to a grand old age. Hardly the dropping dead in the middle of his life leaving her with young children that some posters were anticipating.

It is this. He wasn't transparent about the other thing which I forgave him for, and even had kids with him. Now I feel like he's screwing my life once again with this health thing

I know this health condition is not his fault and doctors can't predict what the future would look like, no one knows etc. but why couldn't he have told me exactly that instead of keep on saying that 'he'll be fine'? For me that is minimizing it.