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?

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.

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!

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.

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.

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 .

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.

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

Have PM'ed you OP.

Haven't read many of the responses but I'm sure everyone's being supportive of you and decrying your friend for being so smugly superior. You can never know unless you have a condition yourself and have lived with it. You're living a good life with your illness, you married and you have children who can benefit from your experience. I didn't get my fibromyalgia or my OCD from my genes, and there's a whole world of nasty crap that can grab hold of people and make life difficult. My friend had a stroke when she was ten, completely paralysed the left side of her body, completely out of the blue.

There are a few conditions where I'd consider screening though, the ones that are exceptionally difficult and painful to live with like Harlequin Ichthyosis.

I think your friend is an idiot, sorry.

I have Factor V Leiden as well, as does my sister, my dad, his brother, and possibly my cousins (don't know them well enough to know the outcome).

It is not a given that it will be passed on, as my own brother doesn't have it - but since 5% of the British population do have this condition (that's 1 in 20 people) it's pretty common.

If you have homozygous (both genes carry the mutation) Factor V Leiden, it's more serious than if you have heterozygous (only one gene carries the mutation) - the risks are higher for clots - but aside from that, it doesn't really affect day to day life in most people.

We didn't even find out we had it until my uncle suddenly died from a PE in his 60s - Dad is his older brother and had got through life without incident until that point, but it was jolly useful to know for when he had an operation later and got a DVT. My sister and I were also glad to know for when we got pregnant, and could prophylactically use clexane to prevent clots. I also get a clexane jab before I fly home to the UK from Australia. It also means that we don't take the combined OC pill, and that HRT would be more of a risk than it's worth for us.

I am not making light of this condition but it's hardly a case for not having children! DS will be tested for it when he's old enough - at 4.8, there's no real need to test him (and it takes a fair bit of blood to do a full thrombophilia screen)

I have NEVER heard of anyone suggesting that a thrombophilic disorder should be a reason to not have children - especially given this one's prevalence in society - madness! Do you not think that some of the medics involved might have had a word? but they didn't! they just gave advice on how to a) achieve a safe pregnancy and b) avoid clots post partum.

Good grief.

I would be ditching your friend first and foremost. It's a very personal decision, and really no one has the right to judge in this situation. I had a healthy child, then one who had a cleft lip and palate. We later found out this is genetic, and went on to have 2 more, who incidently also had a CLand P. Although this isn't something life threatening it did cross my mind (but not for very long mind you) that perhaps it was selfish of me, but then I look at my girls and they are living a totally normal life and think it's fine.

To the person who suggested PGD; you don't just walk into your local maternity unit and say "I think i'd like some PGD please". It isn't that simple; there are ethics within it and it isn't possible for all genetic conditions.

I actually find it offensive that the suggestion is there that people with genetic conditions don't have the right to reproduce. I firmly believe in fate, and what's meant to be is meant to be.

I think your friend's a fucking idiot.

Do you think you life is not worth-while because you have a treatable disorder?

Exactly.

What has your friend passed on to her children? Does she know? Does she care?

You have a condition and yu know how it impacts on your life. I would imagine that if your life was so bad that you cannot imagine anyone else living with it you would not have had children.

Your children in turn will have a choice. They may choose to have children, they may not.

Have you had your DP tested OP? If he doesn't carry the gene your kids only have the possibility to have the one gene version so are much less likely to have problems from the factor 5. It might be worth it for your own peace of mind.

I hope your DD gets well soon!

Not a lot to add to the previous posters.

Your friend seems to react from the principle that we should minimize at all cost any possibility of illness, injury etc... as if it was possible to avoid it all.
Perhaps her reaction has more to do with our culture that is so risk avoidant plus the fact that some people now are using genetics to avoid to have a child with such and such genetic disease. In some ways, we are now expecting people to not give birth to a child knowing it might have a known genetic disease because medical advances have enabled us to avoid some of them.

That obviously misses the point that:
1- not all genetic illnesses can be detected
2- genetic screening has some big ethical questions attached to it
and 3- if the illness doesn't stop from leading a fulfilling life, then you might not need it anyway.

My gut reaction to that is that, even though it has some serious consequences for your/some members of your family, it hasn't affected your life to the point where you would never want to have a child going through that. So perhaps point 3 is the most important.

I mostly think that your doctors are not bothering to explain things to you properly. If it's a single-gene disorder then it's not that difficult, it just takes a bit of time and patience to explain to someone who hasn't heard about these things before.

We all have 2 copies of every gene - one from mum, one from dad. If they are using the word correctly when they say "dominant" it means that someone only needs one copy of the "bad" gene to have the illness.

If you have two bad copies then you must have got one from your mum and one from your dad, and you don't mention your dad being ill so let's assume that you only have one bad copy.

So your mum had one good copy and one bad copy, and when she had you (and your siblings) she happened to every time pass down the bad copy not the good copy. That's just like throwing "heads" two or three times on a coin.

So you have a bad copy from your mum and a good copy from your dad, so you have the illness. When you make eggs to make babies, each egg gets either the bad copy or the good copy. It's totally random. So each baby has a 50:50 chance of getting the bad copy and being ill, or getting the good copy and being fine. And what one gets doesn't affect what the next will get, it is just like flipping a coin.

You don't mention your DH being ill, so again I am assuming that he has only good copies of this gene.

This is you (probably) Mum has one bad copy and one good copy, Dad has two good copies. Each of the 4 children at the bottom is equally likely.

So many people have children when they are in a crap place financially/emotionally etc with barely a thought for the chold, that I kind of think that any person who puts genuine thought into whether they should bring a much loved and wanted baby into the worls, regardless of whether they may pass on a genetic condition live factor V, are exactly the sort of people who should have a baby. Your friend is an insesitive cow who is talking crap.

YANBU. My DD is about to be tested for epilepsy. It is possibly genetic but we are not sure as epilepsy was seen as a stigma in the past so families covered it up.

If anyone suggested I should not have had her I would probably rip their face off. And I am not at all a violent person. We all have to live our life the best we can. Please ignore your insensitive friend.

Start a conversation about eugenics and her view. Makes sure you slip in a remark about the Nazis.

Watch her squirm and then have nothing more to do with her.

Hi

Reading this has made me think about my opinion of this a lot. My DH has a disease that runs in his side of the family. It a complicated genetic thing but basically only females can be carriers and pass it on because if a boy has it he is affected by it if that makes sense. My DH isn't affected by it so therefore there is no risk of us passing it on.

The disease can be quite mild or very severe. DHs parents didn't know about it until after they had my DH and decided not to have any more children because they felt they had been really lucky. However MILs sisters both are carriers too and one of them has twins that are severely affected but had two children before that who are not affected, her other sister has three children that aren't affected all born prior to them really knowing it was a genetic thing.

Anyway I always thought it was a bit, I don't know what the word is, but a bit irresponsible for sister two to have another child knowing that it could be severely disabled. Especially given that she already had other children. Luckily (i suppose)the child was only born mildly affected.

That sounds awful. I guess what i'm trying to say is that it depends on the nature of the problem. If you have lived a happy life with something then i see no reason why your children can't also live happy lives. I think if it is something where they are going to have no quality of life or will have a lot of pain and suffering then i would think twice before passing it on.

I hope this comes across in the way it's intended.

I think people making comments about eugenics are being ridiculous. Eugenics refers to the state deliberately sterilising "undesirables" so they can't pass on their genes. The OP is asking whether she was right to make the decision to have children given her own genetic condition.

I'm not going to answer the OP because I know absolutely nothing about Factor V Leiden so have no idea what the risks are and whether she made the right decision or not. (I do agree her friend was rude, however, and should have kept her opinions to herself.)

However, it seems to me there are cases when this is a difficult ethical question and you can't say "Yes, of course you should have children." I know a man whose father died of Huntingdon's. This has a 50% chance of being passed down, and you can have a test to see if you have the gene. He decided not to have the test. He did, however, father five children by two different women without telling them that he might have the gene. (If he did have the gene, each child would have a 50% chance of inheriting it; if he didn't have the gene, none of them would inherit it.) That to me is the definition of irresponsible.

I disagree with you hackmum. The guy decided not to have the test to see if he was a carrier. Are you suggesting he shouldn't have had children? Or are you suggesting he should have worried those children with the information? Because one might argue, with a condition such as huntingtons that ignorance is bliss (he chose not to know but it must always be there in the back of his mind).

ah. Huntingdons. Autosomal dominant condition. Horrible death in middle age. Runs in my family.

My view, and I know that others will disagree, is either you get tested (and quite frankly who wants to know they are going to die horribly), you do PGD (and run the risk of finding out you are going to die horribly) or you don't have kids.

To gamble and have children without knowing seems really unfair. Especially if you conceal from those children until too late (i.e. after the birth of their own children) the risk of their children developing it.

However Factor V leiden is a totally different illness as the consequences of having it can largely be managed.

Sometimes my own views on this scare me slightly. However the death of various family members through huntingdon's and suicide due to fear of huntingdons has left deep deep scars.

Totally agree with the friend of the OP. Knowing full well you are going to pass on suffering to someone else is, well, inconceivable to me.

Yanbu, your friend doesn't sound like much of a good friend to me.
Imo your 2dc have already been born, so lecturing you on your disorder being passed down is not only irrelevent as they have already been born but also a completely callous thing to say.

I believe unless someone has the pacific Illness themselves they cannot ever put themselves in that persons shoes.

If you were ttc then her thoughts would be justified