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Genealogy, children, PGD Discuss family and preimplantation genetic diagnosis issues

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Old 04-08-08, 08:12 PM   #1
myrna
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Default To have children or not?

I have thought about this subject a lot over the years, though never as much as the past year or so.

Due to a previous post where Pat wrote: I never let my at-risk status affect my decision to have kids, I know thats a controversial decision but the fact is HD+ people can have amazing lives.. in some cases to a good age before they become symptomatic, so why should I let HD ruin mine and my wifes chances of having a family.

Besides, my mum loves me even if I am HD+ or not (i hope )
I'm wondering if anyone is up for a discussion on this subject?
What decisions have you made & why?

Its such a delicate subject, I know. But I also feel that it's a worthwhile subject & though each person can & will make their own decisions, I think our various thoughts on this could be interesting.

I am not critising anyone when I say I think the opposite to Pat. Nor do I want anyone to feel guilt or any other of those negative feelings for already having children. I had one too & I might have had more if my circumstances had been different to what they were at the time.
I know I wouldn't have thought about it back then as much as I would now.

I'm not saying either, that at risk or HD+ people shouldn't have children...just that there's a lot to consider when thinking of planning a family with HD in the mix.

When Rikki was 5, we went to see a consultant to learn more about her at risk staus & the one thing thats always stuck with me, was him telling me to have her sterilised as soon as she was old enough. To cut a long story short, I decided against that & thought she should have children should she want them. I came to the conclusion that they'd be grown up by the time she developed HD & even if not, her family would be there for them. I didn't think about any real consequences because I didn't understand HD at all.

As it turned out with Rik having jHD so young & never getting the opportunity to have children, that decision was out of our control & I can't tell you how releived I am about that, from the point of veiw of what that child might have gone through, physically, emotionally & mentally. Also from the veiw that HD would still be a possibility for at least one more of our family members.

Of the many HD families I know of, I consider myself one of the lucky ones. For our family, HD started & ended with Rikki. But I'm also unlucky because of what my little girl went through & because she's no longer here with us.
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Old 04-08-08, 08:44 PM   #2
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Default Re: To have children or not?

Brave subject, Myrna, and I hope the discussion can remain how you want it to.

I have my opinions about the matter - but they are my opinions and in no way are they a comment about other peoples approach.

I wasn't aware of HD in my family when I had my daughter. I suspect if I had been, then I would have been tested a lot earlier, and let that result influence me instead. As I am HD+, then I *think* I wouldn't have had my daughter. I would either made the choice not to have children - and if my partner at the time couldn't live with that then it would have been good bye.... or I would have tried the IVF route - although to be honest I don't even know if that's possible.
I don't think I could go down the route of keeping my fingers crossed. Why? Well I don't want to reach advanced stages of HD - it scares the crap out of me - and I really couldn't live with myself if I brought someone into this world in the knowledge that they were 50/50 for getting HD. It's bad enough knowing my daughter is at risk when I didn't know about HD before we had her let alone bringing her into the world if I did.

Like I said, these are my thoughts alone and I din't wish them to cause offence to anyone - if they do they please say so so that we can talk some more.
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Old 04-08-08, 10:17 PM   #3
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Default Re: To have children or not?

I don't think any choice is the wrong one. Well...unless you're popping them out like a production line. But I do always cringe a little everytime I hear of another new born at risk.

I myself would love to have a child. But I doubt highly it will ever happen. I wouldn't bring one into the world at risk. If I could have the treatment and have a kid without the risk then I would. I'd like to experience being a dad so from that point of view it's a selfish choice. As even a kid not at risk will have to watch me gradually fade away.

So tough choices and it's a personal one. If someone decides to have kids at risk I wouldn't think bad of them though.
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Old 05-08-08, 09:08 AM   #4
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Default Re: To have children or not?

Interesting post Myrna

I would definately NOT have had children if I had been aware of HD in my family
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Old 05-08-08, 09:14 AM   #5
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Default Re: To have children or not?

Personal opinions differ don't they ? Good post though...
I was discussing this with a friend of mine last year & She asked me this "Would I rather have not been born if my Father had known about his status/chances and had decided to not have me?"
To be honest my answer to that was "No - I've had a good life so far"
I'm glad I've had a chance at life for myself and although things are going to go pear shaped at some point, it doesn't alter what I feel myself...
I realise everyone's different and has different opinions though - it's all intensely personal
I wouldn't criticise anyone for what ever decision they made though
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Old 05-08-08, 09:17 AM   #6
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Default Re: To have children or not?

When I tested I decided that if the result was positive I would not have children. I hadn't even decided if I wanted children or not anyway and I still don't know. My result was negative so I feel so lucky that if I do have children one day then they will not be at risk.

Like Ashlee my sister is at risk and doesn't want to be tested, she has two children. I'm not sure but I think that if she had tested and it was positive she would still have had kids.

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Old 05-08-08, 10:40 AM   #7
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Default Re: To have children or not?

It's a very sensitive issue and an intensely personal one isn't it?
My perspective? My husband and I don't have children, but it wasn't a conscious decision, and nothing to do with HD, because we had no idea HD was in the family until it was to late to have children (well, for me anyway!). But every day I am so grateful that we didn't, not just because of their 'at risk' status, but also because I can imagine just how terrible it must be for a child growing up with an HD symptomatic parent. I know it's not always like this, but I have experienced first hand my husband's behavioural changes when he first started showing symptoms of HD. I found it absolutely bewildering, so how much more bewildering would it have been for a vulnerable child to see their dad like that? What I have read on this board has reinforced that view.
But having said that, I would utterly respect the decision of anyone who had made a well-thought out choice to have children anyway.
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Old 05-08-08, 03:38 PM   #8
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Default Re: To have children or not?

Well you all know my views, I dont regret my life or the lives I helped create.
I dont blame my father for passing on HD to me and I pray that they find a cure.
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Old 05-08-08, 11:03 PM   #9
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Default Re: To have children or not?

I was adopted at a young age so never had to see my natural mother go downhill and eventually die. I always knew about the 50/50 risk I had of developing HD. When my husband and I discussed the subject of having children the predictive test was not available. If it had been - I would have taken the test and if positive we would not have had children. We therefore decided to take the chance as we both felt that advances were being made with research etc. and that it wouldn't be too long before a cure could be available. We now have 2 sons aged 24 & 22 and thankfully I recently tested negative which was a huge relief to us all. For us this was a risk worth taking but obviously it could so easily have gone the other way. No-one else can make that decision for you and no-one should judge you when you do make your decision.
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Old 05-08-08, 11:16 PM   #10
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Default Re: To have children or not?

TBH I see all side of this argument and all are valid,

I always knew about HD, I don't remember a time of "being told" I never had that suprise that so many board members describe. I did have issues as a teen but they were due to lack of family suport with two disabled parents.

I had my first two girls while at risk.....my mum had me and my sibs while at risk. I wanted a family and didn't think to deeply intot he fact we may have all been hd positive, my take on it was we could have a damn good twenty years before getting ill. Maybe my child would find the cure.

After testing and having several years to heal I think If I was to make that decision now I would find it more difficult. My thought would be with a child having to potentially face difficult issues I had too. I also know alot more about JHD and I would be so scared incase age of onset was to become gradually younger and younger in my family.

What I do find really uncomfortable in life and as an opinion generally is the assumption or the rapidness that medical staff and other people have to assume carrying an at risk baby is a terrible thing to happen.

I have encountered staff who have been so quick to offer abortions and cvs when I have been pg assuming it's an accident and not a life choice. I as an 18 year old had to argue to a grown genetics nurse the pointless ness of a cvs. My baby was my baby and I loved him/her no matter what set of genes she was born with. It did strike such a nerve and made me feel very cold inside. What if my mum at 18 had an abortion because she was at risk...... no katiepie to join this board and no katies children.

It's also true that my mum had Sharon and James......both phd's but I wouldn't want to be without the happy memories we share growing up together as children.

It's a biggy and I would probably be pro having children if I had to decide.
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