Questions for those undergoing PGD

Hi

This is a question for those having PGD for an inherited condition. (Especially if the condition is late onset/ non-life threatening / or 'treatable'-)

Was the decision to go through PGD natural, as in you would never ever have wanted to pass on the condition? OR, was it a difficult decision to make for you and your partner?

Has anybody has differences in opinion (or strength of opinion) to their partner?

I am not sure if there are people who post here who are in the situation i described. If your circumstances are different but you have something to say, please post too!

Thanks,

Kate

Kate, it may be helpful for those answering to understand your interest in the topic :D

I have a medical condition, and am having genetic tests to hopefully determine whether inheritance is dominant or recessive. (Both are possible with this condition). If dominant, my kids will have 50% chance of inheriting the 'dodgy' gene, and potentially have the condition.

Just wondering if there any others who have been in similar circumstances and how they came to decisions on whether to use PGD/prenatal testing or not.

I have seen a genetic counsellor, i am kinda looking for more personal points of view.

Thanks,

Kate

I'm not there yet.. I haven't even had any testing done at this stage due to an unexpected lap for endo. Once we are over this hurdle we will begin testing for a strain of MD that runs in my family, of which I have a 50% chance of being a carrier (my father carries the gene).

For us it will be a natural decision and one that we have both discussed and agree wholeheartedly on. Nomatter what the cost - we will do everything in our power to ensure our baby NEVER has to suffer the debilitating illness that is MD.

We both understand the risks involved - i.e. we must ALWAYS use protection, we cannot and will not ever have a baby naturally, IVF will be draining - emotionally and financially, we will have to make the choice to either only have girls or to have our embryos specifically tested for the gene. There are so many factors involved.

We have openly discussed the possibility with our parents - who had mixed responses. My Dad said that we would be preventing the next "Einstein" or "Beethoven" from being born (i.e. "choosing" embryos). My Mum said that medicine has come so far and if you can prevent your child from suffering then it's your duty of care to do so.

I have copped some flack - even here on BB about denying the chance of life - i.e. picking one embryo over another because one is healthy and one is not. IMO that is an incredibly narrow view and it's not at all like terminating a pregnancy because of a birth defect or the possibility that the child will be SN. It's about pre-empting and PREVENTING suffering in your child for a particular illness.

The MD gene that runs in our family is late-onset and affects mainly the muscles in the calves and shoulders. However, it also has some affects on facial muscles as well. My uncle, who suffers from the illness, was diagnosed when he was 30. He is now 45 and will soon be in a wheelchair. He cannot work, cannot kick the footy with his kids and can't lift anything heavy (his legs are too weak).

I would never knowingly put my child through that, and DH feels the same.

So in answer to your question - if I am found to be a carrier - we will not hesitate to use PGD. There will be no question in the matter.

Hi Kate,

I am pretty much in this situation, my condition is dominant and can result in a very sick baby which doesn't even survive more than a few years. However, the tricky thing is that it is very hard to predict how things will turn out, I have it as well and have no symptoms.

Personally I think it?s is very difficult to make a decision what to do and terrible that you have to make this decision without having a clear answer. I have decided to go for PGD to avoid it. The reason is that if my baby would get sick and I know that I could have prevented that it would be very hard to live with. I think it would be very hard living with a sick child and terrible to see your child suffering but knowing you could have prevented it would just be the worst thing I could imagine.

That said I respect very much people who decide differently than me. My sister is in the same situation and just went natural, she now has a beautiful daughter, we haven?t tested her, so don?t know if she has the condition but so far her development is normal which is great.

Just my 5 cents.

Take care,

Sara

Thanks Sara

I don't want to pass it on, but i don't know how far i want to go so this doesn't happen IYKWIM.

Thanks again for sharing,

Kate

Hi Kate,

No problem.

Take care,

Sara