Hey everyone

This is a difficult post for me to write so you will have to bear with me. I lost my Mum last year to a brain illness which is genetic. At this point I have a 50/50 chance of developing the illness in the next 30 years. I made a decison when Mum was diagnosed not to be tested as I think life is for living.

This appears to be biting my on the backside. When i was first referred to the FS my GP made a very nasty comment about my risks and the clinic ended up ringing me saying we won't see you unless you agree to a test.
It was by sheer luck that i have a private gynae who has the best FS in the area working with him. He also is the top guy at the NHS clinic and he agreed to take us on.

Last week he told us he wants us to start IUI in Feb and then he tells me I need to be recounselled about the illness by a genetic counsultant and then he has to take it to the clinic Ethics commitee to get their clearance. This will all take months and put us well back.

Whilst I would do anything to be a mother I won't be blackmailed into getting tested. Since knowing this I have decided over and over again and with my DH that we don't wish to know my status. I know its all about the welfare of the child but its also docs just playing GOD.

I wondered if anyone else has had to go before a committe like this and what happened.

Bumb

Hi

Im sorry to hear this difficult dilema you have. I cant even imagine how you must feel
I dont have any advise but im wondering if they are doing this to cover their backs in case anything goes wrong?
Could you try and ring the ethics commitee and try to get some information.

Thats why i think they are doing it, i could be wrong but i hope you manage to get thru it as best you can

Hi Bumber, what a difficult situation, I can totally understand your choice not to want to know.
In terms of the committee, I think as you stated, they have an obligation to look into the welfare of the child. Do you know if genetic testing of embryos exist for this condition? If so, the committee might decide that they recommend PGD. What I don't know is how they decide between choice (yours to find out whether you are affected) and costs (doing PGD if not required because you are not a carrier).

All I know is that fertility centers have a duty to consider the welfare of the child under hfea rules. Although it is them playing God, there are also ultimately responsible for participating in the creation of a child.

Have you tried to contact the hfea? Contact details are:


Human Fertilisation and Embryology Authority
21 Bloomsbury Street
London WC1B 3HF

Telephone: 020 7291 8200
Fax: 020 7291 8201



Many to you.

Thanks for your posts. I know its controversial. Hence the lack of response from others, I have looked at every avenue, extensively including PGD at Guys but without my mums dna which was not stored before her death this is not possible as there is no mark with with to test.

We are now in their hands. However FS has told us this is our last chance so we just have to hope and pray and if need be fight.

x