To have children and pass down a genetic disorder?

I originally mentioned PGD. I am neither a Nazi apologist or a believer in eugenics for a perfect society.

I do believe it's not fair to bring children into the world with known conditions which will mean untold suffering for the child. From discussions with the OP it would appear that factor V is not a condition on this level and so I don't now think she was unreasonable to have her children.

I don't believe anyone who has a child with a genetic condition is as fault - its quite often the case that people have children and then, only through the child's illness, do they become aware of the genetic history. However knowing you carry a serious genetic condition and choosing to pass it onto a child, for which the child will suffer strikes me as a bit cruel (not the OP, as she has stated that this isnt the case with her children). PGD does have many arguments for and against, mainly those on a religious basis, for which I respect the differing views. It doesn't automatically mean that anyone who thinks PGD is a good thing is trying to rid the world of 'imperfect children'. Quite the opposite usually.

If I knew there was a chance I had Huntington's Disease, that might deter me from having children because there is no cure and nothing to be done for it. I couldn't not find out if I had it, either, if it was in the family.

However - this is an ENTIRELY different proposition.

Factor V Leiden isn't even a disease, it is a condition that may cause people with the mutation to have blood clots more commonly than other people. Most people won't even know they have it, and the chances of it affecting them badly is low. The OP is, IMO, very unlucky that her family seem to have a severe form - which suggests to me that there may be something else involved as well (there are other forms of thrombophilia, also from gene mutations - activated protein C, deficiencies in AT3, Protein S or Protein C; and from acquired problems, such as antiphospholipid antibodies and others). Factor V Leiden is even described as a type II thrombophilia because of its relative mildness; the clot-control deficiencies are type I thrombophilias and more dangerous.

Knowing that you have the condition is protection in itself - it can be controlled. Completely. It isn't life-limiting in the way that e.g. diabetes is; most people with it won't need to take anticoagulants on a daily basis unless they are in a high-risk situation. Even my Dad, who has had 2 DVTs (post-op and post-flight) isn't still on anticoagulants - it's not considered necessary.

Your friend was out of order. Why don't you send her an email, tell you were upset by her comment and that you started doubting yourself and include a link to this thread.

Our geneticist told me that 100% of the population have at least one defective gene, but most people have 2 or 3. That means that we ALL have the potential to pass on defects, but just don't know it.

In my husbands country before a couple marry they have to have genetic testing to ascertain whether they share the same genetic "faults" therefore giving them prior knowledge of conditions any potential children may have. Whilst I don't agree with it, I can sort of understand it as the healthcare system is private and children who have treatable conditions that COULD lead normal lives in a developing country most likely will not. Thalassaemia is the most common condition for example, and people do not have access to blood transfusions as you have to buy the blood.

On the other hand you have freaks of nature unique couples who despite NOT having the gene present, manage to pass on autosomal dominant conditions like myself and my husband.

This is a really difficult situation but ultimately I feel that your friend was out of order. It is easy for her to have a black and white view on the situation, not having been through it herself.

I found out that myself and my DC's have a genetic disorder when DC2 was 9 months old. To say I felt awful was an understatement! As far as we know we have a fairly mild version, that's why it wasn't diagnosed for so long. I would dearly love a third child but knowing that I have this is holding me back. The chances are 50% I'm told. We have been told that we have a 5% chance of any baby we conceive developing without kidneys. Quite low but still a big worry.

Glitterknickaz Is that BOR syndrome you are referring to. Would be really interested to know if it is.

Bumblebee-Depends on the quality of life they may have and whether there is a high possibility that any future children may die young, i would tell them my honest thoughts but i wouldn't deter them from having children if that is what they truly wanted as it wouldn't be my place to do so.

Yes Pumpkinsweetie. The friend didn't need to say it because it does no good.

Perhaps the question at hand is if your friend came to you before they had children and asked if you thought it would be wrong for them to risk passing their condition on to their unborn child, what would you tell them?

I would say again it depends on the life that person has. I would ask them to think about the worst things they have been through because of it and ask if they would want someone else to go through that. IF they have had a 90% fantastic life with 10% of shit then there is more of a reason for you to believe that the child will have a happy life, especially combined with the parent knowing how to deal with it from direct experience.

If you were ttc then her thoughts would be justified

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.

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.

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.

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).

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.

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.

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.

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.

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.

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.

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.

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!

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.

I think your friend's a fucking idiot.

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

Exactly.

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 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.

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.