To ask if a non-fatal possible genetic condition would put you off having children?

[willowriver]

Hello,

Here is my situation, I have a sibling who has a mental health disorder which seems to run in the family. I have seen the horrendous impact it has had on his life.

I have to admit having a child and possibly passing this condition on scares me a great deal.

AIBU to seriously consider not having a child for this reason ?

I think perhaps you are more upset at having to look after your brother, and for that I truly feel for you. No one should be in that position or the position you face

However, on the issue of whether you procreate, well, that's a massive decision and there's been a general consensus here as to what to do. From people in a position similar to you. But we don't even know what condition you are talking about...

So, then perhaps I don't get it. So I wish you the very best of luck in the decision you make

That's because no one knows what condition it is. A diagnosis of anxiety and depression but far far more severe. It is something that encompasses a myriad of mh conditions but none really fit. Hence genetic counselling is useless. But I daresay I'll now be told I'm making it all up - and I'm used to that!

It'd depend what the condition is, I have Cerebral Palsy which is not genetic but it's suprising how many people think it is.

I have a non fatal genetic condition (a genetic form of diabetes) and it didn't put me off having children. My mum sometimes says that if she knew she would pass it on (they didn't know it was genetic when she had us) she would have thought twice. I'm hoping that there will be much better treatment for it by the time my children get it though (it doesn't emerge until adolescence, so I still don't know which if any of my kids will have it but it's a 50% chance each due to a single, dominant faulty gene)

My DSIL has a genetic condition, and we did go for genetic testing before we tried for children. DH is a carrier, so 50:50 chance the children will be carriers too.

DSIL has a brilliant life, but I know she would love to be fully mobile, as life if more difficult for her - if I could guarantee that any children would be no worse off then she is, I would been more relaxed, but I knew that she has the most "mild" version, and lots of children with her condition die as babies, or before adulthood... So I don't think I would have risked it if I had also been a carrier (I'm not), but there are medical options to assist in this case...

Oh, and drug addiction runs in my family, so I will be monitoring that with the DCs, hopefully it has been "bred" out since my dad's generation... I think there were contributing lifetime triggers, so I hope there is nothing genetic there...

But having children is the biggest roulette game of all - my DPILs had no idea they were both carriers for DSIL's condition, and they grew up 300 miles away, so what were the chances... Most people have no idea about the genetic ticks they carry...

Okay, so genetic counselling isn't going to be helpful. But, you have observed a pattern that is suggestive that there is a inherited component.

Given the hints about the nature of the disorder, I would say do lots of homework around strategies that can be employed from early childhood to off-set the potential impact on future quality of life should it be present.

These things are seldom a yes/no clear situation, lots of variables. It will I think perhaps come down to the strength of your desire for children, and the balance between probability of inheritance and the degree with which the negatives can be off-set.

I am disabled due to what is probably a dominant autosomal defect (the inheritance pattern is known at present, but not the gene/s). I did not know i had it when i had kids, but would still have had them after, even though it is very likely they are affected. Life isnt perfect, everyone has shit to deal with. At least if my children are affected, it wont be a shock to them.

There aren't any certainties but given my grandfather had it, my mother AND my brother, I do feel that there is a fairly high chance of such a condition - or conditions, more accurately, as the combination of such is the killer - being passed on

If it is genetic, the most simple explanation is:

Grandfather to mother to brother indicates autosomal dominance inheritance. 'Autosomal' means not linked to the X chromosome (evidenced by both males and females suffering) and 'dominant' means that one bad gene copy is enough (evidenced by instances of an affected parent having affected children).

Therefore, if you have inherited the bad gene, you'd be showing signs of the problem. You aren't, so you haven't.

Doh, i should have spotted that
Unless it is something that appears later in life??

I was in a similar position. DHs sister has "something"... Nothing been diagnosed, but some sort of LD of MH problem. She could never live independently and the way she interacts with people has a characteristicness about it. Over thirty years ago she was taken to "someone" - paed? - who said she just had a very low IQ and some people do. She was developmentally delayed, had hypotonia and now as an adult just can't function cognitively very well. She is also unbearable to be with as her personality and the way she interacts is unbearably grating and self centred.

Things is, DHs aunt and reportedly his grandmother were the same. They also all had very small stature and severe scoliosis.

I was terrified of having a child like DHs sister. But I do know that half her problems are down to how her very loving parents dealt with her. She was cosseted, protected, deferred to, and it's turned her into a monster. They also didn't fight for help. I know what I would do differently and that thought gave me the courage to try.

We had a DS who is not in any way like DHs sister, thankfully. He doesn't have "it". We are trying again and I am scared again. But having DS has made me see how much I would fiercely love any child of mine and perhaps it doesn't matter as much as I thought it did.

Surely, if your DB has been raised by a mother with the same MH condition then he is not as healthy now as he could be if raised by a stable, well person with foresight and the wherewithal to implement early intervention?

willow, I want to say I completely get your dilemma.

And I agree with this, wholeheartedly:

Perhaps it's easy to say you wouldn't regret it in the abstract but the reality of phone calls at 3 in the morning, of crying, of terrible, crippling anxiety, of financial problems, of seeing someone you love completely disengage from life - would you still not regret it? And would you regret it if you know you would die and leave them helpless and alone in the world?

I have two siblings with something I suspect is rather similar to what you're talking about. Both have talked about/implied wishing they'd never been born more times than I could contemplate counting. Both have attempted suicide more than once. My parents are broken.

I had DC pretty young and without thinking about it. Boy do I think about it now, as I see the potential start of difficulties in the people I love most in the world.

Had I waited a few years and thought more before reproducing...? Well, I don't know what I'd have decided, but I think I'd have had the same dilemmas as you.

I don't have an answer for you but I get it. All the best with your decisions.

I have sympathy for you OP. There is a medical condition which runs in the maternal line in my family - and even if science doesn't know if it's genetic or not, when it's run in your maternal line for so long...you kind of don't need someone to agree with you to know it's the case? (I don't want to say what it is because I don't want to out myself to others).

I don't think that you are being unreasonable. I don't think anyone making choices about whether or not they choose to reproduce is being unreasonable. It's a very personal choice.

If you really did want children, could you potentially consider looking into adoption? Or fostering?

Grandfather to mother to brother indicates autosomal dominance inheritance. 'Autosomal' means not linked to the X chromosome (evidenced by both males and females suffering) and 'dominant' means that one bad gene copy is enough (evidenced by instances of an affected parent having affected children).

Maidofstars this is assuming monogenic causation/inheritance. From what OP says, I suspect this is likely to be a complex, poorly understood multigene thing.

Maidofstars this is assuming monogenic causation/inheritance. From what OP says, I suspect this is likely to be a complex, poorly understood multigene thing

Not at all. It's working from the OP's pedigree, saying nothing particular about the genes involved. I agree that this is unlikely to be monogenic, if it's even genetic in the first place.

OP, it's worth remembering that it's not only genes that run in families but also environments.

Thanks for some replies. I definitely don't want to adopt or foster.

My brother has as I have said some mixture of mental health conditions - nothing really that could be detected or fixed down. However they are serious and they hugely impact not just on him but on everyone. And, if I did have a child with a health condition - any health condition - I wouldn't be able to care for them and my brother.

So - no children for me.

I have passed on a genetic disorder to my daughter and i wont find out until she hits puberty whether I've also passed a second one onto her.

Will it stop me having more? No. My daughter and i manage fine with the one she has, it's inconvenient yes, requires regular hospital check ups but it's not something that is life limiting.

The second condition though, if she has it i will be devastated.

Hi Maid, I don't want to derail the OP's thread (or criticise!), but what you say sounds a bit misleading to me - I think those arguments don't apply very well when lots of relatively independently-inherited genes are implicated. (Also, even if it was related to a single gene, if this gene was a dominant one as you suggest, then it could easily be X-linked, not necessarily autosomal. Grandmother, mother and brother are actually quite likely to share an X).
Very true about the influence of environments, though.
Sorry, don't mean to be argumentative, but think this is quite important. The ways some traits run in families are very poorly understood and trying to work out who'll be affected using basic genetics just doesn't really work.

I wouldn't choose to have never been born despite the pain.

Lots of impaired lives are considered OK by the people that have them and those that know them. It doesn't follow from that that there should be no reservations about knowingly creating more such lives. There is some bad logic implicit in doing that that somehow equates contraception with killing a disabled person.

The alternative to the life they have, for people with a disability, is death, which may be a loss of something positive, for both the person and everyone connected to them. The consequence of contraception is that history unfolds slightly differently, with no loss to the potential embryo, since it doesn't exist to suffer loss, and the consequence for everyone else indeterminate.

(I feel I'm not making my point very clear, while being convinced I have one. Maybe someone else who knows what I'm trying to say can do better.)

I have a genetic condition, I have suffered terribly at times. I'm still glad I'm here, the good bits have still outweighed the bad. I don't wish my parents hadn't had me.

No one is guaranteed an easy life. If I have had severe chronic pain, others will lose someone to cancer, or experience poverty, or live with being abused. Or be healthy their whole lives then get Alzheimers. Suffering is very much a normal part of life, therefore it isn't selfish for disabled people to have children.

That said, if I knew a severe mental health problem ran in the family, I probably wouldn't have children, no. Just from my experience of mental health issues, they can cause such intractable, long term misery, you're talking about quite a different phenomenon. Which isn't to say at all that people shouldn't under those circumstances, just that I wouldn't.

AnotherChange
As I said, 'the most simple explanation...

X-linked dominance can often cause sex-dependent phenotypic variation resulting from skewed X inactivation in females etc. But yes, it's possible.

What does 'relatively-independently inherited' mean? Genes are either linked or not, independently-inherited or not.

Anyway, it's all gravy as we both agree that this is likely to be a multifactorial disease with perhaps multiple (independently inherited) susceptibility loci that become important only in certain environments.

trying to work out who'll be affected using basic genetics just doesn't really work

Except we do it every day in genetics clinics across the world

Also not argumentative on my part either. Genetics is cool!

It's very possible that it's affected those members of your family without affecting you or your children. Maid has given one suggestion but there are other scenarios. A genetic counsellor may not give you all the answers but their expert opinion would be more informed than yours, surely.

Try it. What's the worst that could happen? Someone whom you'll never meet again can't answer allyour questions, and possibly thinks you're being a bit silly. Ok not much fun, but rather that than abandon all hopes of having children just in case.

It sounds like you don't want a child at all OP. That is perfectly and you shouldn't feel the need to justify it.

YANBU at all, especially if it has such an impact on his life (and family
life).
Is it something that can be screened for in the womb? or can the parents both be screened and then given a more accurate likelihood of the baby having the condition? If so, then maybe pursue these routes ?
If I thought that a child had a reasonable chance of having such a condition then I would probably seek to adopt.

OP, if I'm being honest here, I think your first post is a bit of a misleading one especially considering your subsequent ones.

In your first post you presented your situation as a dilemma you were facing. However after you posted in reply to someone who said something very reasonable:
"You don't get it, do you? Never mind."
I came to the conclusion that actually this isn't about helping you make a decision as deep down in your heart you've made the decision and you do seem to have confirmed that when you've now said:
So - no children for me.

This changes your OP for me.
AIBU to seriously consider not having a child for this reason ?
You are not unreasonable for deciding not to have children for ANY reason. You don't have to justify it to anyone else. It seems clear that you feel like you don't feel like you could cope with certain situations. However that smacks to me that reflects something about your life NOW rather than any future you have. You sound like you are struggling to cope and are in need of support in dealing with your brother's issues. And that is being transferred to your feelings about having children. The thing is any child you have is not your brother or indeed any of your other relatives. They are an individual in their own right who might deal with problems in the same way, but equally they might cope in completely different ways and have support from other sources. You just don't know. What it comes back to is, how you see the illness and how you are coping with it now and not being able to see any alternative way of life living with it.

I think your comment Of course there aren't any guarantees with any child which perhaps means I shouldn't be a mother at all, as bluntly I want to be a parent, not a carer. perhaps says a lot.

And as others have pointed out there is no guarantee that any child you have will have it. So this reflects how you view risk and how you are viewing this as a probably that your child WILL have it, rather than the likelihood that they won't. I think in some ways you are doing yourself a massive disservice here. You are so focussed on the fact that your child won't be able to cope because of their genetics you are missing that their mother must be a hell of a woman with some bloody great genes to deal with living in a family where several people have lived with it and is capable of looking after her brother.

But I suspect this is a bit of a mute point as I think you have decided not to have children anyway and the purpose of this thread isn't to help you make that decision but to validate that decision and help you come to terms with it and maybe hear from others in a similar position. I think you are struggling, and for that reason despite your protests I think you might benefit from counselling, maybe indeed genetic counselling, to come to terms with that decision.

I think having a child is the biggest decisions you will ever make. I think to take it so seriously is one that many don't do and full credit to you for doing so.

But when you say:
Perhaps it's easy to say you wouldn't regret it in the abstract but the reality of phone calls at 3 in the morning, of crying, of terrible, crippling anxiety, of financial problems, of seeing someone you love completely disengage from life - would you still not regret it? And would you regret it if you know you would die and leave them helpless and alone in the world?
This could be ANY of us. Regardless of what condition your child may or may not have. And again its reflecting what's going on in your life right now, not telling you what's going to happen in the future if you have children. You could have a child and it could be a life changing gateway to a more positive future. Unfortunately unless you open that door way you'll have to deal with the 'what if' demons as well as the 'if only' demons.

Like I say, I really think this is about your current situation and coming to terms with a decision you've made in your heart rather than asking if you are unreasonable.

I hope you find the peace you are looking for.