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.

Enraged at who? The person actually living with the condition he informed you about who is now facing their own mortality. What about empathy for him since if this is how you would feel, imagine how he feels?

Op, I think you are probably a bit angry at yourself.

Your update says that your children did not inherit this condition and you worry about them losing their dad. But that could happen for any amount of reasons. They could lose you .

Take a deep breath. Your DH told you about this. You chose to ignore it when marrying, and again when getting pregnant.

So no point in getting angry at your husband. Focus on what you need to do now.

Hope it goes well for you all.

I will quote your comment to my genetics consultant. And I already said ‘if’ it’s hereditary.

Hes a man.
This is mumsnet
Hes in the wrong, of course. He told OP he had a potentially life limiting condition but he "looked fine on the outside"
Perhaps OP should have listened and initiated a deeper conversation before committing to marriage and children.
Poor bloke 😢

My friend was born with Tetralogy of Fallot, if you do a quick Google it will suggest the life expectancy after repair is 30-40 years. It is not straightforward for her to get life insurance. But life insurance isn't based on individual risk. Her consultant tells her to make sure she plans for retirement.

He told you the condition. You chose to ignore the life-limiting information when you looked it up because he seemed fine. Maybe he felt fine in himself and therefore chose to ignore it too? This is on both of you, you should have had an open conversation before you had kids. If you love him, support him.

My husband was born with tetralogy of Fallot (a heart condition) and was one of the first children operated on in the 1970s. Previous generations died in their teens. We are now mid 50s. He was also denied life insurance for our last mortgage. I actually find it reassuring that as a man in his mid 50s he has heart traces every year. He knows a lot more about his heart health than most men his age.

Even if it is hereditary it is rarely a straight 50/50 chance of having a child with the condition. Many hereditary diseases only affect boys (as they only have one X chromosome) and only then when the mother is a carrier of that condition.

Male children of a haemophiliac (for example) will be unaffected, female children will be carriers.

I don't think you are being unreasonable, in feeling the way you do. However, as others have said, I don't understand why you wouldn't have done more research into his condition before having children with him; the information on his prognosis was obviously available, as you say that you were able to find more details once he was refused life insurance.
I think the main issue is whether or not his condition is hereditary; I'm assuming it's not,as it would've been noted and discussed during your pregnancies?
Completely understand him burying his head in the sand,as we all have a tendency to believe "it'll never happen to me".
I'd suggest you get your ducks in a row and try to find a life insurer that will cover him,even if the costs are exorbitant, it'll be worth it if the worst was to happen.
As I said, I do feel for you,OP, but don't think either of you have handled this situation very well.

Also to add to my previous comment, it’s worth speaking to a mortgage broker and financial advisor as they will be able to advise you about ways both you and your husband can get a mortgage together

The life expectancy of the repair is 30 odd years - but additional surgery can usually be done.

There's no firm data on life expectancy for post 1970s repairs as they are the first generation. DH has been lucky, his repair is almost 50 and holding up well. My friend, 5 years younger, is having regurgitation and needs another surgery.

For my life condition it is a straight 50% chance of passing it on so I don’t need you giving me figures you just have googled. Enjoy your day.

You don’t know what’s going to happen in life.
God forbid, he or you could get cancer later this year and be gone within 12 months. Or have a tragic accident. Or get diagnosed with something else.
Was Google around when you got together? Did you research it a bit when he told you what it was?

I think you’re being a bit dramatic about it. Not much you can do now other than live your lives.

OP I'm going to assume that his condition is some sort of congenital structural abnormality of the heart eg tretralogy of fallot or TGA. If so then yes life insurance companies may understandably not want to take the risk but it doesn't mean he's doomed. Treatment of these conditions have evolved so drastically that it's probably not possible to reliably predict whether he's going to die age 40 or age 80. It's the same for most medical conditions. Look at cystic fibrosis. If you'd asked the prognosis for a baby born with CF 30-40 years ago we might have said they'll be lucky to reach adulthood. Now it's expected that most will reach middle age. For a baby born today? Who knows? Because we don't really have the data yet. Medicine is constantly advancing.

I've found out in the past few years that I have a dilated cardiomyopathy. A few years ago this would have meant very poor 5 year survival. Now my cardiologist reassures me that he 'is aiming for me to reach 90'

I understand. It does feel like a sword of damocres having such a diagnosis but like anything it's what you make it. You can wallow in the fact that DH might die young, you can be angry about something that in reality he probably doesn't have many more clear answers as you do or you can focus on preparing as fully as you can for a bad eventuality whilst enjoying family life as much as you can whilst you can. After finding out about my condition I don't wait for experiences any more. We go on holidays, we spoil our dd and seize the opportunities we can. In some ways it's a sword of damocres, in others it has set us free.

Also agree
and you both decided to have children
I suspect you blocked out the possibility early in the relationship because you wanted to get married and you blocked it out when you got pregnant as the alternative was not having children together.

isnt it a bit like women deciding to marry and have kids with a much older man who isn’t as likely to be around by the time kids are older?

Lots of people have risks of life limiting conditions (cancer genes, MS, transplants, sarcoidosis etc) but still live normal lives. No one is guaranteed to live to a ripe old age and see their kids grown up.

Agree, counselling to come to terms with it and to avoid blame which is going to be a thorn in the side of your marriage

I haven’t just googled so you could stop being so rude and not be so definitive about the universal applicability of something you clearly only know about from your own perspective.

This is something I have been living with for a long time because it is not only you who has a genetic condition.

This is 100%

I feel for you, OP 💐

We can spend life regretting what could’ve been. If we’d asked more questions or done things differently.

Or we can feel blessed for what we have and focus on the best way forward from where we are right now. To avoid more regrets.

Suggest you encourage your DH, with your support, to find out the exact current prognosis for his condition, by speaking to a consultant and help groups. If your DH had medical conditions from being a child, his parent/s (rather than him) will have had it explained to them. I can imagine it’s difficult to get a grip on it oneself, once an adult, without enough support. It can be a lot to face as a young adult.

Suggest you enjoy the present, hope for the best (there are medical advances all the time) but plan for the worst. As we all should do. None of us knows what the future holds. Best of luck 💐

"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"

You had full disclosure from your husband prior to getting married. You are entirely to blame for your ignorance of his possible prognosis. You had the option to fully inform yourself, but you stuck your head in the sand. You had the choice to proceed with him, given his condition.

Is this condition at all hereditary? You say your children are fine, but are they possible carriers? This is potentially a far more serious concern.

I’m sorry you’re upset and worried, OP. I completely understand this is very worrying, especially as you have children together and face an uncertain future. I think once you’ve given this sometime and the initial shock has subsided, I think you will be more understanding to your husband. I believe him when he says he was in denial because to face this fact head on as a child must have been utterly terrifying, we also don’t know how much his family played it down. I have a family member whose son has a life limiting condition and she treats him exactly the same as her other sons, because she doesn’t want to think about it all the time and doesn’t want him to feel “different”.
Your husband did inform you of his condition so in hindsight a long discussion should have been had, especially before introducing children into the mix. But there’s no point dwelling on that - none of know how long we are on this planet.
I do understand your anger. My husband isn’t looking after himself well at all and has been diagnosed with various diseases as a result. I know how he treats himself is his choice but there is a small part of me that feels resentful because at the end of the day it’s me and the children who will suffer the consequences should he die before 50.

Please be kind to both yourself and your husband and children - this is a huge shock.

You are the one who started being rude. No need to respond to me at all but you had to. I said my life changing condition makes me cry every day so I really don’t need your antagonistic bullying. I know what my genetics are and I can comment however I want. Again, enjoy your day.

How patronising. You do know that not all conditions are the same? The odds are not the same. So your condition is 50/50, but that is meaningless against conditions which aren’t.

Go educate yourself before spouting patronising bullshit about things you clearly know nothing about.

I think you’re being incredibly unreasonable. You've said yourself thst your husband told you about his medical condition and that you researched it - it’s down to you that you didn’t take what you were told and what you read more seriously. I can’t believe your attitude and that you’re angry with him for ‘putting your kids and your future in danger’ and asking if he’s being selfish - I think you should consider who is the one being selfish.

Exactly.OP literally says in the OP

"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"

He told her, she looked it up and she decided to ignore what the info said. So nothing has been sprung on her now. He told her and she ignored it.

OP should be (and maybe is) annoyed with herself, not her DH.

I honestly don’t see how you have acted any differently than him, he told you of his condition, he didn’t specifically tell you the worst case scenario.
We’re very much in an age of information, you googled the condition and it’s very easy to see all the information pertaining to it and you chose to gloss over negative bits too.
Is there another reason you’re not turning this around and trying to blame your DH?
Are there other issues that are causing you to focus on this?

Nope. you were the one who proclaimed with absolute certainty that the likelihood of children inheriting a genetic condition is 50%. The poster simply corrected you because you’re wrong.