To have children and pass down a genetic disorder?

Your friend is being a complete tit.

I have Factor V Leiden (heterozygote) and my consultant said it's really common in the population but most people never know they have it. I was only diagnosed after a miscarriage and had anti-coagulant injections through both my successful pregnancies to ensure I carried to term. It's just not that big a deal.

I think your friend is being a bit judgemental to be honest.

I would say that if you have ever thought 'I wish I had never been born', then perhaps you should have thought twice about having children, but if not and if your life gives you fulfilment in spite of this trouble, then I think it's irrelevent.

'it is crucial'

This is something that we have been discussing a lot this week within my family as it looks like my aunt and cousin have inherited a type of dystrophy and now my mum and her other siblings are being tested. If mum doesn't have it then I'm in the clear too but if she does then I'll also have to be tested.

If it turns out that we do have it (would be the adult onset version of it) then I will not have any more children. The disorder is more serious with each passing generation (especially if inherited through the mother) and I have decided that I am not prepared to take the chance of passing it on.

I am lucky that we already have two children born before we knew that we had in the family. My cousin is badly affected by it. It presents like very low-functioning autism, muscle wasting and problems with the heart. Thankfully neither mum, myself or my dc's show any symptoms so the chances are that we are not affected.

Ah bless you Thumbwitch thank you.

In all but the darkest of moments l believe something will come up with all the amazing research and medical advances going on and that she will live to be 100. She is 11yrs old btw and the medical people are very happy with her so far. As am sure you are aware as you sound very knowledgeable on this is crucial to minimise the damage to her lungs as much as possible for as long as possible.

I have first hand experience of Huntingtons. Do you hackmum? If not, you have no right to judge until you're quite sure you know ALL the facts. I don't have it but there are those in my dh's family that do.

Lucyellensmum: "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)."

Perhaps I didn't make it clear. He didn't tell the mothers of his children that he might have Huntington's. So they were not in a position to make their own decision about whether to have children with him or not.

Of course he should have had the test - it's irresponsible not to. And if the test had showed that he had the gene for the disease, then in my view he shouldn't have had children. There are Huntington's sufferers who do make this difficult decision. I think these days maybe it's possible to go down the IVF route and genetically test the embryos before implantation but am not at all sure about this. I guess that would be an acceptable alternative.

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.

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!!

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)

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.

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.

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

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

I´d be loathe to pass something on tbh.

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

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.

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).

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.

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.

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

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.

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.

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.

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.