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Children with genetic conditions

(12 Posts)
fredfredsausagehead1 Thu 20-Nov-14 12:54:29

...that you gave to them unwittingly hmm

How do you parents deal with this knowing you've passed on a condition that will cause them life long pain, medication, emotional problems?

I've 3 children who all have a disease that will most certainly taint their life, medically and emotionally. Family planning, pain, medication and feeling a bit different will be part of their life forever. Hospital visits aand stays.

Nobody gets it. People forget or -and I am shocked at this one / the CHOOSE not shockto hear or address what you're saying.

We look normal. But none of us are and it's craphmm

Edenviolet Thu 20-Nov-14 12:58:45

Our four dcs have EDS and other health conditions, some related to EDS, others just bad luck.

I do feel guilty sometimes esp on bad days and it is difficult to see dcs in pain. I see a counsellor to talk about things and it is helping

lougle Thu 20-Nov-14 13:00:44

Well I suppose it depends if you knew that you had a passable condition and chose to conceive regardless or if you found out after having the children?

DD1 has an undetermined genetic condition.

fredfredsausagehead1 Thu 20-Nov-14 13:18:27

I didn't know and that's the worst thing and causes the most anger. Of course I wouldn't pass something like this on, I did say in my OP unwittingly hmm

fredfredsausagehead1 Thu 20-Nov-14 13:19:28

Hedgehog I identify with that the bad days and bad, other days you just get on with life...

Edenviolet Thu 20-Nov-14 15:14:43

We knew when I was pregnant with dc 2 that it was likely any children we had would have EDS, at first they told us it was a 50% chance! then said 75% so I don't think the drs were even sure! but when dd2 (dc3) was born and it was obvious straightaway she also had it they said any child we had would inherit it (we both have eds)

Guilt will always be worse on bad days, you feel responsible but it isn't your fault OP. I try to focus on all the positive things the dcs can do and how, on good days they are happy and try to just get through the bad days.

fredfredsausagehead1 Thu 20-Nov-14 19:34:27

I didn't know about eds until now, sounds really rough and quite similar to dear my kids (and me ) have , no mobility problems at all though that's crap

BarbarianMum Fri 21-Nov-14 00:36:16

Its not quite the same but I found out a couple of years ago that my mother and I both carry a genetic mutation associated with autoimmune disease. We are both prey to various autoimmune conditions and a whole host of allergies too.

I am pretty certain I have passed this gene on to at least 1 of my children sad. I did feel guilty for a while til I realised:

1. I don't blame my mum at all for passing it on to me, and would tell her she was being ridiculous if she said she felt guilty (which she undoubtedly does).

2. Despite various health issues, which will undoubtedly worsen as I age (unless modern medicine catches up), I have a wonderful, happy life and there is no reason to suppose dc won't do otherwise.

Obviously some conditions are a lot more serious than others but in the end we really have very little idea and no control about which genes we pass on to the next generation. I will also say that we tend to feel worse for our children then they do for themselves - an unavoidable part of parenting I guess.

fredfredsausagehead1 Fri 21-Nov-14 12:59:34

Thanks barbarian what you say is right. It can be isolating but you have to talk to yourself mindly and take control

beautifulgirls Fri 21-Nov-14 20:45:41

DD1 has a genetic condition though she is de novo - ie spontaneous mutation that affects her but not us/we are not carriers either. I know it isn't logical, that we didn't knowingly give her this or choose it for her, but I still feel that somehow we are at fault because we made her. If I could change things for her somehow then I would. It could however end up with me being consumed by all this thought, so when I head that way I then try and step back a bit and look at what she can do, what her strengths are and be thankful for the fact that she is a happy child. She understands far less than we do about her issues compared to an unaffected person which is a blessing really.

I think your thought processes are very normal for people in these sorts of situations. Be kind to yourself and remember your kids still love you as their parent and you have huge amounts to offer them that sadly not all children will have in their life.

cestlavielife Fri 21-Nov-14 23:05:39

You are not responsible for your genes.
They just are.

saintlyjimjams Fri 21-Nov-14 23:15:39

I had ds2 (not so much, because the severity of ds1's condition wasn't all that apparent when I got pregnant with him) and ds3 knowing they would be far more likely to share his condition than if they were some randoms. Luckily (that's in "") in his case his condition is thought to be a mixture of genes and environment & we were able to alter environmental exposures (probably a good thing in ds3's case). Both are fine in terms of ds1's condition.

I don't think there's much point in guilt etc - we're all at the mercy of our genetic background in some way or another. If you do feel guilty I think it's misplaced and honestly I think you should get some counselling to help with that. Please don't beat yourself up for something random.

IN the case of ds1 I had no idea that was carrying a bunch of genes that with the 'right' environmental exposures could render him severely disabled, I made very different decisions for him than I did for his younger brothers, with very different outcomes. But I know I made the best decisions I could AT THAT TIME. That's all we can do, moment to moment. Feeling guilty because we made decisions then that we might have made differently now is pointless.

Don't be harsh on yourself.

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