Hi everyone

First I just want to say thank you to everyone that has responded to posts on here from my husband and I - it really does help, we are very grateful, there are some very good people out there.

Ok so for the moment my husband does not want to be tested, we are trying to get on with life normally. However, as I have posted on here before we really do want to start a family. So we have two options if we don't want to have them at risk. Exclusion CVS at 10 weeks or exclusion PGD. I like exclusion PGD but I need to explore further the risks for the child, it is also from what I hear a long process and I imagine stressful with no guarantee of a pregnancy.

Now I know this is controversial. Just looking at exclusion CVS for a moment (I do not want to just rule this option out without thinking carefully) - if it works and the gene comes from my mother in law then fabulous we have a naturally conceived child without fertility treatment - the best case scenario for me. However, if it does not work and is deemed at risk like my husband, you face a termination. That would be very difficult. Has anyone undergone this process where the parent was 50/50 rather than gene positive??

ps. we are not wanting to rush this, I am conscious it is important not to rush. We only found out my husband was at risk a couple of weeks ago although have known deep down (minus his father's test results) for going on 2 years. I want to explore the options, we are planners. Maybe time will help.

I think i know of a couple of people on here that have done that, and were not able to carry through with ending things. But, this is what i think. CVS would be a lot less expensive, and you wouldnt have to go through the long hormone treatments. I think it would be a matter of what you feel you can do. If you think you could do cvs and carry through with it, it can be a very good option. I'm glad you're both thinking through all of this, and it's even nicer to see a husband and wife on the forum together, that's something that a lot of people aren't able to do together, so i think you guys have a lot going for you

Thanks Barb for your post. I imagine that is the tough bit and what you need to be able to get your head around - could you terminate the child if it was at risk. See Exclusion PGD avoids all that but I am worried about the long term effects on the child I don't feel comfortable yet that there are none particularly as we could be trying to save them from something they are not actually at risk of. I guess I need more info about the risks of PGD (if any). I know it is going to be a long complicated process....

I'm thinking there might be something to consider with cvs. If you do that without your husband knowing his hd status, if it turned out the baby was positive, then your husband would find out he's positive? I'm not sure how that works. But with invitro, if they are all positive, they don't tell you that if your husband doesnt know his status, they just say there weren't any viable embryos, for whatever reason, and it doesnt necessarily mean hd

Thanks Barb. That is the downside about CVS because what they do is check which line the gene came from (they don't test if the foetus is positive) - my husband's mum or dad. If it came from his dad the baby is considered "at risk" like my husband but not necessarily positive. It could be healty - that's why it is controversial. PGD means you don't have to go through the risk of terminating what could have been a healthy child. It seems like PGD is the answer to all your worries but I am not sure what risks PGD carries for the child later down the line....

Thanks for reminding me how that worked Well, with invitro, if every egg is healthy, they don't implant all of them, see what i mean? So other healthy ones are not used either.

Hello LJH,
I am in the same boat or roller coaster. For the past month I have been thinking about starting a family with my husband. My husband is at risk for the HD gene. His father has the disease and he lives with us. I am 25 and my husband is 26. His dad starting showing signs of the disease at 50 or so. He is now 61. He can do most things on his own but not easily. We were hoping to start having kids next summer or the following.

I am finding it extremely hard to discuss the options with my husband because his way of coping is to not think about the disease, but we are slowly talking about it.

The first step in this process is to decide if he wants to test....that decision is still inconclusive. In the meantime, I have been working on getting life and LTC insurances in place- just in case we do test and it is positive. I also strongly believe we will need these insurances anyway and I tell my husband that because I don't want him to feel pressure to test because I want him to test- I do my very very best to not influence him on this decision.

My husband has always been the one to let me decide things financially mainly- house, bills, insurances etc. but I have told him this decision to test is too personal for you for me to make this decision. I can live life either way- and we cannot go wrong either way. This roller coaster has brought me close to God... and I only pray and hope that we do God's will and pray that God puts that in our hearts, and I told my husband that.

He is still unsure if he wants to test...that was our last conversation. These past couple of weeks of thinking about starting a family have been very stressful, but they have taught me to have faith...to have faith in our future and in God. We have only small sporadic converstations about the topic... I am trying to not overwhelm him.

The option we have explored is PGD....mainly because I do not think I could terminate. PGD is also a long stressful process and there are even moral issues to consider-just depending on the indiviudal person. We are still in the process of finding the right insurance.....I think he is leaning toward not getting test and having kids and letting God take care of the rest..... this is till not certain though... and it absolutley DRIVES ME CRAZY haha...but that is because I am such a control freak... I need to be patient and let thing happen in Gods time and not my time. I can let you know how thing go if you would like?

It seems like a huge storm ahead, but taking it one step and one day at a time helps and NOT WORRYING about the next step till it is there helps. For example I am getting LTC and life insurance and not worrying about whether my husband wants to test or not until the insurance is in place...then we will not worry about PGD until the time comes. This DOES NOT mean I don't research PGD and testing. I still do because I want to be well informed.

Anyway best of luck to you.

This story was in the press it might be of interest / use .

[www.echo-news.co.uk]

Jaq, that is very interesting to read thank you so much