To have children and pass down a genetic disorder?

[killagorilla]

I have Factor V Leiden, it's a blood clotting disorder and is passed down from parent to child. I have it as does my siblings and every family member on my maternal grandfather's side.
It is quite a serious disorder and I have had one blood clot in my lung, all my family are on a low dosage of warfarin/heparin/aspirin to minimise the chances of blood clots.
I have 2 kids and they both have it as well. I was with a friend from university today and her kids and she was asking about it. When she found out that it is passed down from parent to child she got a bit shitty with me.
She said that she would never have kids knowing that they would have it and it could mean injecting yourself regularly and not being able to live a normal life.

I've been thinking about it and now I feel a bit because I look at my kids and can't imagine life without them. But maybe I was selfish to have children knowing they would have something that has caused me so many health problems.

What do you guys think?

Hi there
OP - do you think this would be better suited to What Would you do or ethical dilemmas? Not really AIBU is the place for this.

I often wonder how I would have felt had I known my DD would develop Type 1 diabetes at 3 years. I now know that my DH and I have produced two children who are genetically pre-disposed to develop the condition but neither of us had any idea that we would. There is no type 1 in either of our families at all and I feel incredibly guilty about it every day. I don't know why because I know that we couldn't have known but it still bothers me. All things considered, if I had known would I still have gone ahead? Yes I would because she is the most joyous, wonderful child and deals with it fantastically.

Trills everyone in my family have it, the doctors have said that they believe it is a dominant gene (well explained it in a way I could understand). We haven't had anyone born into the family that hasn't had it for over 70 years. It has been hard for me to live with it as it has affected my circulation, given me agonising periods and horrendous labours. Other people in my family have not had it as bad though so I hope that's what happens for my kids. I am so lucky however as I know there are people in this world much worse off than me and I am so thankful for the relatively good health I have.

Olivia - i actually think AIBU is exactly the right place for this, as the OP isn't asking WWYD, just venting that her friend was being UR. It isn't even a question, as the unanimous response on the thread has shown, but of course, in your wisdom, you know best about how these threads go.

What a lovely 'friend' I dont' think anyone can really judge until they've walked a mile in your shoes. But as others have said, if you went down that route where would it stop?

My dad has depressino, that can be genetic but touch wood I don't seem to be a sufferer. what about breast cancer? Should ugly people not have kids incase they pass on their looks? (Not the same I know). But what I'm saying is there are no guarantees in life and I would hate to live in a world where only 100% 'perfect' people shoudl conceive.

I also have Factor V Leiden, I was the first in my family to get blood clots, I've had two DVTs, both when 17, triggered by the pill about 4 years before Factor V Leiden even had a name! I have two DSs they will be tested when 13 I'm told by my GP. I don't know about you but even though I have severe Chronic Venous Insufficiency and suffer from Post Thrombotic Syndrome, I carry on my life as normal, it doesn't stop me doing anything as such. I certainly didn't think about not having children, why would I?

I disagree Olivia, I think it's a perfect place for it.

Honeytea, there had been lots of mysterious deths in my family. People dying very young sad with no actual cause of death. When my cousin died the morning after his 18th birthday they conducted an autopsy and found he had a blood clot to the brain and run tests ect. It's such a common thing now in my family for one of us to be in hospital with a blood clot and doctors are really stumped as to why it is that serious.

I had no idea it could be that serious, I am so sorry to hear about the loss of your cousin that is so so sad :( I didn't mean to belittle it, I just didn't realise it could be so serious.

I wonder if they told you and the kids had the gene from both parents, I think that makes it more dangerous, about 5% of white people have the factor v gene, so it isn't that rare, but the chance of your DP also having it and your kids getting a double dose is low.

Also there are so many blood clotting issues that are not understood yet, The tests they did on me were so intense, about 15 different blood clotting disorder tests. Maybe your cousin was unfortunate and had factor 5 doubled or with another disorder.

The chances of your DC being effected to the same degree is unlikely.

I think your 'friend' should be ashamed of herself.

honeytea - im confused as to how you got a "double copy" of the gene. If it is a dominant condition, you only need one defective gene to cause the condition, however, dominant x dominant usually = non viable :(

Also, this would imply that both your parents carry the mutation

As others have said, at least you know about one d them. I sympathise. DH is a haemophiliac so we went through huge discussions on this before ttc as daughters would be carriers and pass it into their children in any case, and in the event that I also unknowingly carried the gene, it would affect any DCs.

DH was very much of the view that chronic haemophilia A with 0% factor 8 was liveable with, it was arthritis and poor screening of blood products for hepC which actually made things difficult. So we went ahead. We have a lovely DD who knows her blood is a little bit funny and special like daddy's so head dives off climbing frames are not a good idea,but otherwise both DCs are fine.

Someone gave me dodgy genes, I didn't know how had a genetic condition and had two kids who both inherited it.

Is she a big donor to jeans for genes Charity?

oh, i think you answered my question in your post above honeytree :)

We haven't had anyone born into the family that hasn't had it for over 70 years

Well that sounds unlucky, but as far as I know there is no way that a single gene (or even a group of genes) could exist in a pattern that means that your children will definitely inherit the issue, if you are having children with a partner who is not a part of that family.

If it's a single dominant gene then it is as if you have rolled 10 heads in a row, but that doesn't mean you are more likely to roll a heads (has it) than a tail (doesn't have it) for every individual child that you have.

If it's a group of genes that interact it's more complicated, but still not possible to be 100%.

I hope your children do have the milder form - when will you know? Or will you never really know?

I have hypermobility sydrome, its genetic and I'm 38 weeks pg. It never even occured to me not to have children to be honest. The condition causes me pain and discomfort but unless my daughter gets the more severe condition which is linked there is no reason for her not to have a normal life. I know its not quite the same as your condition but I will still most likely pass this down looking at family history.

Way I see it is- you could have a perfectly normal body and give birth to a child with conditions, genes are a complicated thing, if watered down your child may or may not inherit what is wrong with you. Your child could be born healthy and then get an illness which leaves them with health problems.

I think that was a really cruel thing for your friend to say and I wouldn't give it any more brain space than it deserves.

Words fail me.

YANBU, when you consider the implications of her thoughts - she is basically saying that she doesn't think your parents should have had you.

At best she is thoughtless. I hope that's what the problem is.

Chocamocca wow it sounds like youve been through so much. My brother has had a DVD (caused by a plane journey) they were debating at one point to remove the leg. You must have been petrified being so young! I'm glad you don't feel guilty for having your kids, I didn't either but when someone brings it up you start to doubt yourself iyswim?

<a class="break-all" href="http://www.google.co.uk/imgres?um=1&hl=en&safe=off&client=firefox-a&sa=N&rls=org.mozilla:en-GB:official&biw=1366&bih=638&tbm=isch&tbnid=21Iy49RV9DPI1M:&imgrefurl=www.retinaaustraliansw.com.au/rp.htm&docid=87bwDOZjSCys9M&imgurl=www.retinaaustraliansw.com.au/images/AutosomalRecessiveInheritance.gif&w=565&h=448&ei=I7AqUNy4LIew0QXFpoH4CA&zoom=1&iact=hc&vpx=348&vpy=228&dur=1314&hovh=200&hovw=252&tx=115&ty=106&sig=116376348858149390140&page=2&tbnh=131&tbnw=168&start=21&ndsp=26&ved=1t:429,r:21,s:21,i:207" rel="nofollow" target="_blank">this diagram may help explain dominant recessive diseases.

OP do you think you will be saying anything about her comments next time you see her?

op i dont think your friend is really your friend.

Well i have it, my mum, nan and 3 out of my mums' 4 sisters do. I had 2 children when we found out, went on to have another and now considering a 4th, I can honestly say that we have not considered it a factor for not having children!
We have not had any major problems with it, and obviously now we know we take extra pre cautions. (also explains why i DVT with the pill at 16)
Will get my dc tested at 13, just so we know/ can advise how to help.

Your friend was out of order.
Please keep strong.

*DVT

oops

My son has it as was tested before tonsils taken out, daughter has been tested once and they said she didn't, then re tested and said she did. Now we are going for a third blood test, poor thing.

natnat I don't know because she is the type of person that only sees things her way. If I tell her she is wrong she won't believe she is wrong so it will be like banging my head against a brick wall. I do think it was a not thinking before speaking moment on her part though to be fair.

My husband has Leiden factor V he is one of 4 brothers and 2 of them have inherited it.
My husband has had no problems so far (he is now 46) the other brother with the condition has had 2 clots and he is now 54. My father in law from whom they inherited the condition died a few years ago aged 81.

I have 3 sons who we haven't had checked yet - we didn't even know about the condition until relatively recently and none of the family are taking warfarin yet, although my father in law did.

We will have our boys screened and take the necessary precautions regarding long flights etc because we now know what we are dealing with.

Your friend is being very judgmental.

It has never occurred to us that we shouldn't have had our boys. we know what the risks are and we know what they should do to keep well.