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?

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.

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.

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.

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.

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.

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.

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.

I have EDS and have a Son. He has a %50 chance of having it and already has poppy joints.

Do I regret having him? No! He may run into problems but we will find ways to manage it, he will still have a life ahead of him.

That woman is a bitch, does she know everything about you and your DC's life? Probably not, she is not in a position to pass judgement without seeing them at their happy times and good things in their life.

My DGD has Cystic Fibrosis , from her mothers side. The chances of her meeting another carrier were astronomical (for those who dont know you can only get CF if both your parents are, and even then not necessarily get it iyswim) but she did and my gorgeous DGD is here.
Cant wait to tell her she shouldnt have had children , she has another DD also (not CF). Would love her to meet your friend btw she'd probably deck her.

Besides with all the leaps and bounds in medical science, l fully expect by the time she reaches a crucial age, who knows what they will have come up with. She certainly lives a near to normal happy good quality of life even compared to a child 20 years ago might do.

Also as someone else pointed out , illnesses, conditions etc can start with any generation even with no history. My son has recently been diagnosed with MS - no history whatsoever in family.

Sorry son if you're reading - your mothers selfishness brought this on.

YANBU I have a genetic blood clotting disorder too, I have Protein S deficiency. I have had two DVT, on warfain everyday when not pregnant and clexane when pregnant.

I have 3 children and they have a 50/50 chance of having it. They may all have it, they might not have it, we don't know. I will encourage them to get tested when they reach 18, the results wouldn't be too accurate until then but it isn't anything to worry about. PSD is treatable and I assume that Factor V is too. It is knowing about the condition and educating the children that is important. I would want my girls to be tested before they went on the pill for example as that would increase there risk.

The only person who has ever commented on my having 3 children is my mother and that was because so was worried about my health. It is no one business except from mine and my husbands whether or not we had children.

sudaname - that's not true re. the genetics of CF. The incidence of carriers of the CF gene is about 1 in 25, and therefore the chances of meeting another carrier is about 1 in 625. The chances of 2 carriers having a CF child is 1 in 4, so overall the chances of a CF child being born are 1 in 2,500. It's one of the most common recessive genetic conditions.

Just to be clear - those stats in my last post are for the Caucasian population in the UK.

And btw, I have loads of problems from what I have but am glad to be alive. :)

Loads of people on here would have said I should have been aborted and I have had posters on here have said it before. :( I don't believe that, I may get pain and a million hospital appointments but I have had some amazingly happy times.

YANBU

I felt really guilty knowing I had given my ds a genetic condition. Its an x linked condition so I carry one faulty gene and each ds I have has a 50/50 chance of having the condition and each dd having a 50/50 of being a carrier.

No one had had this condition in over 80 years until my son was born my grandmother called it the curse of the fathers which is very incorrect as she was the carrier as was her mother. My grandmas older brothers had all suffered with the condition and thought it was their fault so a couple never had children. My grandma had 3 girls one of those girls had 3 boys all healthy, the other 2 daughters both haven't had children yet and then my dm who had me and my db who is fine. Then I have dd, then ds who has the condition and another ds who doesn't.

It took 2 years to get a diagnosis for my ds he doesn't shed cells correctly or sweat, he also has come and go Alopecia. I have also been diagnosed with auto immune problems that ds seems to also have gotten, hence it coming through in his come and go Alopecia. We also have Morphea in my family from my dad which I too have but thankfully very mildly.

So yanbu to have children as you op were in a better position than myself as when you had children you knew how to prepare and knew they might have a condition. I had no clue which I think is why I felt guilty.Your friend should really be less judgemental and more understanding.

Totally YANBU. Your friend is a cow. Maybe she shouldn't have had children in case they turn out to have a genetic predisposition to be foul to people.

The thing about a lot of genetic disorders is that no one knows about them until a baby is born with s particular condition. I have a relative with CF and until he was born (actually a couple of days after his birth) nobody in the family knew that some of us carry the CF gene. Now, my grandma remembered that way back there were a couple of babies who failed to thrive, but this was put down to "normal" infant mortality for the time.

I got tested for CF when DH and I started TTC DS (ooh, abbreviation heaven!) and as it turns out I don't carry any of the most common CF genes but, and this is important, even if I did no fucker would have the right to tell me not to breed on that basis. If anyone tells my other rellies who do have the gene not to breed they can wait while an orderly queue to punch them on the nose forms. Behind me.

Depression also runs in both DH and my families: we can't screen for that yet and it is something I wouldn't pass on if I could help it, but I am terrified my DC will be afflicted. However, I'd rather they were here and occasionally doing battle with the black dog, just like me.

Also, I don't tan. I burn horribly and freckle. This makes me more likely to get skin cancer somewhere along the line. Bite my pallid ass: life isn't all about risk avoidance (although it would be lovely to not have to use baby sunscreen for once).

It's an interesting debate. I do think your freind was out of line, esp given your condition. If someone is TTC, then I would still disagree with her.

If a condition is dominant (ie child has 50/50 chance of inheriting it) then the only way that gene could "survive" is if the person suffering the related condition would be able to reach child bearing years. So most of these conditions must either (a) be less severe - in which case there's little quality of life argument to be had, or (b) be incredibly variable in how they affect someone, in which case the chance of offspring having severe effect may be pretty remote, or (c) develop later in life, in which case sufferer would have a normal life for a long time before any impact is felt, also in 30-ish years time have no idea what medical intervention could be possible.

If the condition is carried on a recessive gene then there's a good chance that a child will not inherit anyway. Obviously it depends on how rare the gene is. But most carriers of recessive genetic disorder genes don't know they have them at all, so there's seldom much of an ethical argument at least when it comes to child 1. Then with subsequent PGD you're effectively asking parents if they wish they could have "chosen" a different child - and no parent could answer that, surely?

BUT - it is near-impossible to generalise as "genetic condition" covers such a vast array of things.

How does one judge quality of life? It's a constantly evolving thing.

Depends on how it would affect them day to day & the health problems you have.

I´d be loathe to pass something on tbh.

tbh, diddl, you often wouldn't know you had until you did. Genes are switched on and off.

i don't think chooosing pgd for a subsequent pregnancy implies anything about a child already born. The decision to have pgd does not mean you love an affected child any less.

Honestly didnt realise it was that high an incidence thumbwitch so maybe saying 'astronomical' was a bit ott. But l still think it is quite unlucky l think to meet someone who is one of the 4% who carry it and out of that 4% meet one of the even smaller percentage within that 4% that are unaware they carry it- iyswim , then there is the only one in four chance thing aswell of passing it onto the child.

It is unlucky, I grant you, sudaname. And more unlucky to get the 1 in 4 child with both copies of the recessive gene. Hope your DGD copes well with it (and that they keep going well with the various strategies they're working on to help it)

OP I think your friend was well and truly out of order. Presumably, neither you or your children wish you had not been born? That is what matters, and she has no right to say otherwise. I don't think I would be having much more to do with her if I were you. Does she also think your parents should not have had you? Some friend!!

I think OP's mate should have bit her tongue.
It's a personal decision.

I couldn't knowingly pass down a significant disorder. Don't want to debate where the threshold is between minor & major problems, I guess only OP knows how difficult it is to live with her problem.

Neighbour has >= 9 kids & at least one of the parents & nearly all the kids have a growth & mobility disorder. It looks to me like it significantly impacts their lives, and the less affected siblings end up caring for the others. On top of that they have decided to follow a minority religion (sometimes has cult status in popular imagination) which further socially isolates them all. I don't feel very comfortable with it all.