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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

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Original poster

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 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:

SmellsLikeWhiteSpirit · 14/08/2012 20:42

This reply has been deleted

Message withdrawn at poster's request.

CrispyCod · 14/08/2012 20:42

Don't be concerned with what others think, it is a decision you made for your own reasons and doesn't need to be validated by others.

honeytea · 14/08/2012 20:43

I think your friend is nasty!

My family also has factor v leiden, I recently was tested for it as I am pregnant now, I don't have it, but I never ever considered not ttc because I might pass it onto my kids! It's not that bad, my grandfather had a blood clot on his lung, but apart from that everyone is fine.

I would say that if you have a girl it is important to educate her young about the importance of contraception as I was told I couldn't take the pill or morning after pill (before I was tested I just assumed I had it.)

I am actually more worried about my DC inheriting my dyslexia or my DP's 3rd nipple than I was about the factor v!

QuietNinjaObsessing · 14/08/2012 20:44

I think you should tell your 'friend' to fuck the fuck off. Until she is in yours or your dc position who the hell is she to judge? Just my humble opinion.

Lucyellensmum99 · 14/08/2012 20:45

I think your friend is an arse!!! you have a 50/50 chance (at most unless its x linked and that does change things and i cant remember the odds) of passing on the condition to your children. But lets assume its 100% that you will pass it on - you have managed your condition all your life, yes its been shite, but you are here, and healthy enough to have children, go to uni etc etc. Also, and more importantly, who knows if next year/ten years they wont discover a more effective therapy or even a cure. Not THAt unlikely, and certainly not impossible - so yes, your chidlren have inherited a condition that is going to need managing, but i bet there WILL be better drugs as they get older and well, im pretty sure they are happy to be alive - tell your "friend" to do one

ethelb · 14/08/2012 20:46

I studied genetics and uni and tbh the only difference between the two of you is you know what potential problems you may be passing on. Which means you will seek appropriate medical care. What is this pristine genetic record that she has?
So little us known about what is caused by genes I find the idea that anyone assumes they won't pass something on ignorant and a bit naive.
She has no idea how much you considered your options or not.
There was a great documentry try on channel 4 last year by one if the blokes on katies friends looking at the options for him and his partner if they wanted to have children. It was brilliant and you should have a look.

Original poster

killagorilla · 14/08/2012 20:48

Honeytea has any blood specialists been in touch with members of your family? I know that factor v is a grey area with doctors, it would be cool to know if your family has developed some sort of immunity to it?

OP posts:

greenbananas · 14/08/2012 20:49

Your friend had no right to get shirty with you. How can she know what she would have done in your position?

Would your children honestly rather they had not been born? Or do they get a lot of joy and interest out of their lives, despite their medical condition?

My DS has very severe allergies which affect pretty much his whole life. I thought long and hard about having another baby, as there is a good chance that siblings will be similarly affected. In the end, when I looked long and hard at DS, I realised that he is a happy, sociable and well-adjusted little boy who enjoys being alive very much indeed. I didn't want him to be an only child simply because of my fears. I am now 28 weeks pregnant with DC2.

Don't let your friend's judgy attitude get to you. Perhaps she should have thought harder before she spoke.

honeytea · 14/08/2012 20:49

Is it a double dose of the gene you have? I just don't think it is that serious a disorder most of my family have not been tested and they just act as if they do have it, so wearing flight socks and not taking the pill.

Mumsyblouse · 14/08/2012 20:50

Your friend is completely out of order. If we all wanted to have genetically perfect children, none of us should reproduce. Of course, if it's a condition that either shorten's life or massively compromises life, you may want to think that through, personally I would not put a treatable condition like Factor V in that category. Ask your children if they would prefer to never have been born!

Original poster

killagorilla · 14/08/2012 20:50

Ethelb I saw that. What a brave man he was!

OP posts:

puds11 · 14/08/2012 20:51

To stop you reproducing would be eugenics, and im pretty sure thats not allowed.

Why should you be denied the right to have children because a genetic disease that you could niether avoid yourself, or prevent.

Plenty of people have kids knowing the risk of the child having diabetes, so were is the difference?

TheEnthusiasticTroll · 14/08/2012 20:51

she is a bitch, so in effect she is saying yoiur dcs are not worthy to be here and you are a bad person for having them. I wouldnt class this person as a friend

Glitterknickaz · 14/08/2012 20:51

I have a dominant genetic condition which causes kidney problems and deafness. It killed one of my babies at 20 weeks' gestation. My DD also has it but thankfully my two DS' are clear.

It's an intensely personal choice. I wouldn't be without my children.

Mumsyblouse · 14/08/2012 20:51

I'd also say that most of us have something we feel guilty about, my husband feels guilty he's passed on his (relatively minor but not ideal) health condition to one of ours, I feel guilty I've passed on my nasty temper. Don't let momentary guilt get to you. Your friend is mean and should keep her thoughts to herself.

LookBehindYou · 14/08/2012 20:52

Horrible thing for your friend to say. Your children are here in this world and very much alive. Even if she thought such a mean thing, she should not have voiced it. If children are loved and happy it is never a mistake.

PurplePidjin · 14/08/2012 20:52

I have no experience, but it sounds like one of those things that is a lot easier said than done. YANBU and she's a judgy cow who needs to learn when to keep her fat gob shut about stuff she knows nowt about!

Lucyellensmum99 · 14/08/2012 20:53

Ethel is right - more and more genetic mutations are being discovered that will make you more likely to develop certain conditions, cancer being an example. The eugenics brigade would have some sleepless nights!

JumpingThroughHoops · 14/08/2012 20:53

I think it depends on exactly how life restricting it is. Injections? well, anyone might be struck with diabetes at any time. It's not a whole big drama these days.

When you say knowing they would have something that has caused me so many health problems do you mean life restricting or just inconvenient?

FWIW, I know someone with 6 children. Knowingly she has passed a congenital heart condition to all 6 children, who periodically undergo open heart surgery to correct defects and replace valves.

No one with an ounce of compassion would say those children shouldn't be here, but I do kind of wonder why she didn't call it quits after 2 children. I don't think that in a harsh or unkind way, but to sit day by day, month by month watching your children be operated on, knowing it was you who passed this on, well I don't think I could live with the guilt that I was causing such pain.

FWIW again, those children have enriched my life beyond belief. They are the loveliest set of teenagers you could ever wish to meet.

Trills · 14/08/2012 20:54

How is it inherited? (just interested) Presumably your children may or may not have got it, and it's only by chance that they both have it.

It's also clearly not that bad, as you are here posting about having two children. It doesn't sound as if you and your children are "not living a normal life".

Natnat29 · 14/08/2012 20:54

OP I'm so disgusted with your 'friends' comments who is she to judge?! People like her make me so cross, how dare she say what is right or wrong to do given she is not in that situation? I'm in a similar situation and I dread the day someone passes comments on my life choices I don't think I could control my response. Don't doubt your choices based on someone uneducated opinion please

Original poster

killagorilla · 14/08/2012 20:55

Honeytea, there had been lots of mysterious deths in my family. People dying very young with no actual cause of death. When my cousin died the morning after his 18th birthday they conducted an autopsy and found he had a blood clot to the brain and run tests ect. It's such a common thing now in my family for one of us to be in hospital with a blood clot and doctors are really stumped as to why it is that serious.

OP posts:

honeytea · 14/08/2012 20:55

No, my Grandad had a pulmonary blood clot about 10 years ago and asked for the tests then (he was a vet so knew about it from reading biology magazines I think, it wasn't a commonly offered test) He has the gene. My aunty was tested and she also has the gene, he 2 kids both have it. My mum and uncle were not tested but lived as if they do have it. I was only tested because the midwife flagged up blood clot problems on both my mum and dad's side of the family, my paternal grandpa died when he was around 40 of a blood clot so there was a risk that I would have a double copy of the gene and that would be a possible problem in pregnancy. My family is very sporty and fit apart from me so maybe that is why the gene hasn't caused too many issues.

TeamGBsometimes · 14/08/2012 20:57

YANBU, but I'm biased because I also had children knowing that I have a genetic disorder.

It's very easy for your friend to get on her high horse, but she hasn't walked in your shoes. Your condition may be serious, but it's also treatable. I know several people with Factor V Leiden, and all have children, many of whom are also affected. All these people work in useful jobs (two are doctors), contribute to society and are fabulous parents.

Why does your "friend" think that she is justified questioning your right to a family life? Most people don't know what's lurking in their genes, you do and so you take treatment to prevent further clots. I know that Godwin's Law states that Internet discussions inevitably reference to Hitler or Nazism, but really...

circlebeginning · 14/08/2012 20:57

I'm currently pregnant and recently saw a haematologist about a possible Factor V Leiden status. He said he was infuriated by the number of patients being worried by their Factor V Leiden status.

Essentially, 25% of the population have the gene. For most people it's a slightly increased risk factor but is really a very minor thing, not everyone who has it needs warfarin/fragmin etc.

I was told not to worry about whether I had it or not.

Your friend would be appalled by me: I have another dodgy gene that has a 50% chance of being passed to my baby - but won't necessarily manifest as anything nasty.

Try not to worry :)

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