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

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Old 29-10-16, 07:08 PM   #1
Ros
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Default HD positive CVS

My husband (who has the HD gene) and I got the terrible news that our unborn baby has the HD gene, yesterday. We have two wonderful HD free children already and didn't think we could conceive again as my husband had chemo a few years ago. This was truly a miracle pregnancy and much-wanted. Our world has been turned upside down by this cruel blow. I feel desperate and the pain of another termination (we had one before) feels like too much to bear.
I know my husband feels a termination is the only thing to do, and I know why, but what happens if there's a gene therapy found in the next ten years? Is it too much of a gamble? I don't know what to do.
Any thoughts would be much appreciated.
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Old 29-10-16, 10:56 PM   #2
banda
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Default Re: HD positive CVS

Oh dear....really empathise with the turmoil and to be honest I could argue the toss in both directions...I know that isn't much help for you. But just to say take some time and think about it, talk about it and I am sure you will come to the right conclusion for you and your family. xx
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Old 29-10-16, 11:30 PM   #3
toosh
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Default Re: HD positive CVS

Quote:
Originally Posted by Ros View Post
My husband (who has the HD gene) and I got the terrible news that our unborn baby has the HD gene, yesterday. We have two wonderful HD free children already and didn't think we could conceive again as my husband had chemo a few years ago. This was truly a miracle pregnancy and much-wanted. Our world has been turned upside down by this cruel blow. I feel desperate and the pain of another termination (we had one before) feels like too much to bear.
I know my husband feels a termination is the only thing to do, and I know why, but what happens if there's a gene therapy found in the next ten years? Is it too much of a gamble? I don't know what to do.
Any thoughts would be much appreciated.
Can't begin to imagine how you are feeling about this. I am devastated for you.


What an horrific situation to be in, but you and your husband need to take time to really think about what will be the biggest decision you will ever make in your lives.

No-one should have to go through this.
Sending you both much love.
Not much help but it is a personal decision.
My only reservation is the gene was located in 1993. 23 years on still no cure or any slowing down of the disease, although we do have to live in hope.
xx
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Old 30-10-16, 08:18 AM   #4
lunel78
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Default Re: HD positive CVS

Quote:
Originally Posted by Ros View Post
My husband (who has the HD gene) and I got the terrible news that our unborn baby has the HD gene, yesterday. We have two wonderful HD free children already and didn't think we could conceive again as my husband had chemo a few years ago. This was truly a miracle pregnancy and much-wanted. Our world has been turned upside down by this cruel blow. I feel desperate and the pain of another termination (we had one before) feels like too much to bear.
I know my husband feels a termination is the only thing to do, and I know why, but what happens if there's a gene therapy found in the next ten years? Is it too much of a gamble? I don't know what to do.
Any thoughts would be much appreciated.
Do you know what the CAG count is for the baby from the CVS? If not, can you contact someone where the testing was done and find out (you might have to push them on this).
Also what is your husband's CAG count?
I think this information might help in making your decision - which is going to be tough either way.
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Old 30-10-16, 01:06 PM   #5
Ros
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Default Re: HD positive CVS

Thank you for your replies, and for being so supportive. I didn't think to ask the CAG repeat on Friday, I was all over the place. It is a good point though as if very high it would def have a bearing on the decision.
It's just so sad, and such a cruel disease in a myriad of ways.
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Old 30-10-16, 07:15 PM   #6
Gabby
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Default Re: HD positive CVS

So so sorry Ros can only imagine the pain you feel . As everyone else has said it is yours and your husbands Decision . The Cag is relevant , with the gene being passed from the Father there is more of a chance of JHD, which would be more awful in my opinion .

Love to you all

Gabby
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Old 31-10-16, 12:45 PM   #7
Ros
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Default Re: HD positive CVS

Well, I spoke to the Clinical genetics department this morning and they said the baby has a 45 CAG repeat (and a 19). In a way I wish it was 60 and then for me it would be completely out of the question to carry on. As it is, part of me feels so desperate that I still can't quite let go of it yet. The baby looks so perfect on the scans and I know she's growing away inside me, its so hard to stop it.
That said, I know that looking at my two children and knowing that they are HD-free is such a relief and comfort, can I really inflict HD on my child?
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Old 05-11-16, 04:28 AM   #8
cmiz
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Default Re: HD positive CVS

Quote:
Originally Posted by Ros View Post
Well, I spoke to the Clinical genetics department this morning and they said the baby has a 45 CAG repeat (and a 19). In a way I wish it was 60 and then for me it would be completely out of the question to carry on. As it is, part of me feels so desperate that I still can't quite let go of it yet. The baby looks so perfect on the scans and I know she's growing away inside me, its so hard to stop it.
That said, I know that looking at my two children and knowing that they are HD-free is such a relief and comfort, can I really inflict HD on my child?

Hi Ros
I'm Claire. I'm so so sorry for you, I feel your pain in fact I know only too well how it feels. I have two boys 8 & 5, their dad has hd gene. I had cvs 3 times and my perfect boys do not have hd. My beautifully perfect little girl would've been 6 now, but she had the gene. It was a really tough decision as you already know, I didn't want to go through with it I wanted the baby so badly, but when I look at my boys I know I made the right decision. As much as it hurts I couldn't bear to tell my daughter that she was the unlucky one. John is about to turn 40 and has recently started with depression (he is totally confused by it as he is normally the most happy, chilled out person you could meet). This past month has been tough and I as you do face a tough future. Only you can make the decision that's right for you, but for me I couldn't gamble with a child's future, life is tough enough without having hd to contend with, I hope to God there is a cure one day, I'm sure they will get there... but what if they don't get there intime for your beautiful baby. Hd is now stamped out in our family and I'm never letting it back in, our kids deserve better
I wish I could offer you comfort I really do. I haven't been on here for a long time I try and forget TBH that he has it. I'm struggling at the moment I worry about him and how it will affect the kids. I've always wanted more kids but I don't know that I can go through the worry again, not just of pregnancy but of the future.
I hope you find the strength to do what you have to do, look at those lovely children of yours and feel proud and happy and know that whatever you do it's right for you.
My heart goes out to you. Xxxxx
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Old 05-11-16, 09:42 PM   #9
Ros
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Default Re: HD positive CVS

Hi Claire, thanks so much for your reply and I'm really sorry to hear about your husband's depression and the worry that brings.
Yesterday I had a termination, which was just the most difficult thing to go through with but as you say, I couldn't burden her with HD and all it entails. It was just too much of a gamble but I now feel so bereft and empty in every sense. I think there's so much guilt whatever choice is made.
Best wishes, Ros
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Old 06-11-16, 06:14 AM   #10
toosh
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Default Re: HD positive CVS

Quote:
Originally Posted by Ros View Post
Hi Claire, thanks so much for your reply and I'm really sorry to hear about your husband's depression and the worry that brings.
Yesterday I had a termination, which was just the most difficult thing to go through with but as you say, I couldn't burden her with HD and all it entails. It was just too much of a gamble but I now feel so bereft and empty in every sense. I think there's so much guilt whatever choice is made.
Best wishes, Ros
Just want to send you the biggest virtual hug Ros. Just horrendous on all levels. Thinking of you and your family right now. I know you will be strong for your boys. Take Care xxx
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