genetic counselling - should we have it?

[minieggmonster]

I am posting this in a few places to get as many responses as possible so apologies if you read this more than once. It's a long post - please bear with me - and please do give me your thoughts, particularly if you have experienced similar but also if you have thoughts even if you haven't experienced this. And if you have had genetic counselling please tell me if you found it helpful. I'm also particularly interested in hearing from people who have disabilities as to what you think we should do.

My dh and I have unexplained infertility - possibly my pcos, possibly his okay but bottom end of average sperm count. My bmi is too high for nhs treatment so we are about to embark on iui possibly with superovultion privately.

My dh's family has a history of a neurological condition called CMT. My dh has it in a very mild and non progressive form - he is a little clumsy and that is it. His mum has it more severely, she has been in a wheelchair since her 50s. The disease does not limit life expectancy or have mental health implications. At its worst it could lead to needing leg irons or using a wheelchair and possibly some associated but controllable pain.

The stats are that our children have a 50/50 chance of getting the disease. There is no way of knowing whether if they get it they will have a progressive or non progressive form or how severe it would be.

The iui clinic would like us to have genetic counselling before having iui. I don't want to. These are my reasons why not

• There is very little that they could tell us that would stop us having children. Even if our children would definitely get it and get it at its most severe form we would go ahead - we think even at its worst people with cmt have a good quality of life and certainly a life that is worth having. Consequently whatever the genetic counsellor told us our actions would be the same.

• If the genetic counsellor told us that we could have ivf and there was a test to pick out the embryos without cmt and only have them I am uncertain we would want to do this. I know fertility treatment is playing god to some extent but I don't really believe in playing god fuirther than that - that is they might decide not to put the cmt embryos back but how do we know the ones they put back don't have another illness that could cause them pain? All life is a bit pot luck like that. (On the other hand if we can have a baby without cmt do we have an obligation to try to do this?)

• I don't like counsellors or counselling. Sorry if this sounds awful. I have no patience for it. What's more, I am intelligent and can read the scientific papers myself - I do not need them to interpret the info for me.

• I can't face another delay. I feel we have been ttc forever and need to start treatment soon.

• If they can select just non cmt embryos then we would have to have ivf rather than iui - this is more invasive and more expensive,

• if we were not having fertility problems then we would not have sought genetic counselling so why have it now just because we are?

So my specific questions:

• what would you do?

• are we being selfish not to want genetic counselling?

• is it terrible to condemn our children into having a 50/50 chance of being disabled to some extent?

Any thoughts/comments welcomed as long as they are not too horrible!

I am a namechange by the way - I don't want friends I have discussed this with to read this then know my user name for other bits of MN.

gosh lots of things to think about here -

firstly can you try to loose some weight because weight loss, even modest really helps to improve fertility in women with pcos. although this might not be enough, it might be enough to for the iui to work.... shame to spend all that money on IUI when you could improve your fertility for free (see collette harris's pcos book, also consider acupuncture)

i agree if you were not going to get counselling without fertility treatment why bother with something as non evasive as IUI.

however it's hard for anyone else to comment on need for genetic testing - what do iui clinic thing iui success rate is? because it may not work and then you'll be looking at IVF and then at that point why not screen (if its even possible?) - do we not all want the best for our children?

hi mumnwlondon

The weight thing etc all being done.

Yes, I think if iui didn't work and we ended up having ivf anyway then perhaps we would have screening - but I don;t want ivf if I don't have to.

I can understand your reservations - you want to conceive naturally and are already feeling laboured with the need to get help.

Would the genetic counselling be a one off session? If so perhaps an hour to reassure the clinic involved that you have considered the ethical issues would not be so bad? Would it cause a big delay?

You are clearly well read on the possibilities, and as you say there are many untestable disabilities that could affect any one of our children. You feel from your personal experience that this disability is not life limiting but simply something that can be dealt with.

I suppose the question for you is whether it is better to test embryos and discard some, or whether you would prefer not to discard any and to only create those you will have implanted. I have friends who did this with their ivf as they felt strongly about it.

Thanks Lovethesea. Your first sentence gets how I am feeling in a nutshell.

I feel we have double unfairness - unfair that we are having trouble conceiving and unfair that we now have to think about this.

But thanks both for your comments - good to be able to think things through.