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To have children and pass down a genetic disorder?

182 replies

killagorilla · 14/08/2012 20:39

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 Sad 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?

OP posts:
ReindeerBollocks · 14/08/2012 23:32

Have PM'ed you OP.

killagorilla · 14/08/2012 23:29

trills I hope you don't mind but have sent you a message.

OP posts:
killagorilla · 14/08/2012 23:21

Hi sorry I didn't mean to disappear but it seems my DD has picked up a vomiting bug, just spent ages cleaning my bed as she projectile vom everywhere. Poor DD Sad.

reindeer my DS wasn't a planned pregnancy so didn't have a chance to do that. With planned DD however I never asked about that as I assumed it wasn't available on the NHS? I know how you can interpret it as being a selfish act but my kids are happy little things that love life probably too much given the 5am starts I have grown accustomed to.
When I was pregnant I know it sounds silly but I was more concerned about them being born safely with no complications but it was at the back of my mind. I'm proud of my kids and would never give them up for anything in the world, I know you don't agree but I would do the same all over again. But thank you for giving me you opinion as it shows that my friend was not being totally unreasonable as people do have different opinions on this.

To other posters, Im so shocked that factor v is so common as have always been told that it was relitively rare, thank you for the advice that you have given.
To everyone else with genetic disorders thank you for telling your story, it has made me feel so much better that I shouldn't doubt myself when it comes to the decision I made to bring my kids into this world.

OP posts:
aquashiv · 14/08/2012 23:19

I also have it but not my sister or my Mother who incidently was the reason I was tested not sure about my brother or Father. It has made me very health conscious and fit in a way I would never have bothered about if I didnt know I had it.

People arent routinely tested for it and during my pregnancies it was managed. How does your friend know she doesnt have it?
What a shitty thing to say to you.

MummytoKatie · 14/08/2012 23:07

I was thinking about this today. I have a family history of eczema/asthmas/hay fever. Not particularly badly affected myself but the gene is there.

Dd has eczema. I have just given up breastfeeding (she is 2.4) and it has got a lot worse. I feel guilty about it. I know eczema is not the end of the world but that doesn't stop me from feeling bad.

But no child has perfect health and we are all doing the best we can.

Chocamochalatte · 14/08/2012 23:03

Reindeer of course there's a chance her children may 'suffer' there's a chance mine may too but there's also the chance that they won't. I 'suffered' do I wish I hadn't been born? Funnily enough no!

SirBoobAlot · 14/08/2012 22:59

If you were posting considering TTC you may well receive different responses.

But your children are here. You can't, nor would you, change that. I'm so sorry your friend has reacted in such a way. I don't think anyone, unless faced with the reality of this decision like you have, really has any right to comment on it.

FunnysInLaJardin · 14/08/2012 22:52

I think your 'friend' should mind her own business. It is your decision alone whether to have children. My lovely friend had a child die at 20 weeks due to a genetic disorder and then she went on, with a 2/4 chance of it happening again to have her DD. Her DD was fine. It wouldn't occur to me to judge my friend. She did what was right for her.

YoullLaughAboutItOneDay · 14/08/2012 22:50

I haven't had a chance to read every response on this, but I've read most of them.

How sad that your friend made you feel so awful. I don't know anything about your condition I am afraid, but the idea that you shouldn't reproduce unless you are genetically 'pure' is so repulsive I can't even begin to process it.

Sarraburd · 14/08/2012 22:48

Oh and YANBU

saintmerryweather · 14/08/2012 22:47

ive got an extremely rare genetic condition (a form of hypertrichosis) which although doesnt cause any physical pain, its the one thing i hate most about myself and i woukd get rid of it in a heartbeat. so although i only have a 50-50 chance of passing it down to my children i am considering not having any because of the effect it has had on my life and how i was bullied for it

ReindeerBollocks · 14/08/2012 22:46

choca I made assumptions that her children would suffer based on the fact that OP states her family all suffer in one way or another with this condition. I think she even stated that at any one time her family would be in hospital with a blood clot. Meaning that whatever strain she must carry, it is clearly very problematic and therefore it is likely that her DCs might suffer too.

If it is the case that her DC's won't suffer then yes, it would be less of an issue for me.

maryz I am not saying that we can prepare for any scenario - however this was something OP was aware of.

trills I could be wrong, but I was under the impression that OP knew of this condition before she had children. Meaning that PGD may have been an option seen as though it was a known condition.
Had she not known before pregnancy, again, I wouldn't have an issue.

Sarraburd · 14/08/2012 22:46

Have been thInking about this myself alot recently as my DS2 has just been diagnosed with autism (and is v likely DH's father and his bro are I undiagnosed cases). The first thing the health team asked us was whether we planned to have any other kids, as the chances are one in five they'd be autistic too.

As it happens, although I'd love more, DH is not at all keen so we won't. But if this had been our first DC, maybe we wouldn't have had our other two beautiful DC. They v much implied that we shouldn't have more.

And does that mean my DC's then should think twice about having kids??

And who's to say anyway that my autistic child shouldn't have a valid life in his own way? What is a valid life?

mumnosGOLDisbest · 14/08/2012 22:44

i dont know anything about your disorder but if you are happy and living a full life with your disorder under cintrol then theres no reason for your dcs to have anything but happy lives too. thank goodness your parents chose not to let this stop them having dcs :)

it would be different if you knew your disorder would cause a lot of suffering as no parent wants that for their dcs.

Maryz · 14/08/2012 22:41

This reply has been deleted

Message withdrawn at poster's request.

Chocamochalatte · 14/08/2012 22:39

Reindeer just for you www.fvleiden.org/ judge away once you've read the facts.

Chocamochalatte · 14/08/2012 22:38

Reindeer, causing them to suffer? How? You really need to do your research. The chances are Factor V Leiden will never effect them.

Trills · 14/08/2012 22:38

PGD only works if the gene that causes a disorder is known - from the description it doesn't sound as if it would apply in this case.

GhostShip · 14/08/2012 22:37

Well it wouldn't would it because I'm guessing you don't have a genetic disorder?

ReindeerBollocks · 14/08/2012 22:35

Her 18yo cousin died, and OP has said she had a serious blood clot on her lung (alongside other clots).

Sounds very serious with a fair bit of suffering.

I completely understand not genetically screening every person who procreates but knowing you have a high chance of passing on such a condition? sorry it doesn't sit right with me.

GhostShip · 14/08/2012 22:33

Tell your 'friend' to fuck off. It's all fine and dandy her saying that, without being in the position.

Killa you've done nothing wrong. Dont let this upset you

Maryz · 14/08/2012 22:31

This reply has been deleted

Message withdrawn at poster's request.

ReindeerBollocks · 14/08/2012 22:26

I'm going against the grain.

YABU.

You are choosing to put them thorough suffering. Have you heard of PGD? Unless you are of religious preference that disagrees with PGD, I don't understand why you didn't consider such a route. You knew there was a risk and took it, the fact remains is that your child now has to suffer with a serious medical condition. I'm not going to say that your right to have child means that a serious medical condition should be overlooked. And in my eyes that makes you unreasonable, and a bit selfish IMO.

Maryz · 14/08/2012 22:25

This reply has been deleted

Message withdrawn at poster's request.

bumperella · 14/08/2012 22:15

Sorry -meant to add,
This freind of yours is either too dozy to realise how you'd feel from her comments, or is an out-and-out bitch.