Return to HDA home page HDA Message Board
HDA About the HDA HDA What is HD HDA Juvenile HD HDA Children & Young People HDA Professionals HDA Resources HDA Research HDA HDA News HDA Events HDA Contact the HDA HDA Home Page

Outside of office hours if you need someone to speak to you can phone the Samaritans on 116 123


Go Back   HDA Message Board > Message Board Categories > Genealogy, children, PGD

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

Reply
 
Thread Tools Display Modes
Old 03-03-17, 09:20 PM   #1
JaneD
New Member
 
Join Date: Mar 2017
Posts: 2
Default Feeling lost - CVS without confirmed diagnosis (or history)

Hi everyone

Have spent a while reading and really upliffted by reading stories on here and how everyone helps each other out.

Our world has been turned upside down over the last week or so

Weve known for a while my hubby was at risk of HD, but it's always been a vague gray cloud hanging out there. His father left his mum with 2 young boys (he doesn't really remember him) and she brought them up herself. His mum told us both before we got married that his father's mother had HD and so he was potentially at risk. I really respect her for telling us before we got married, can't have been easy at all for her and pleased to say we have a great relationship (which is great caus hubby has always been sensisitive about the rejection he feels from his father leaving). The thing is that was pretty much all she knew and she hasn't heard from him for years - slimy lowlife.

Anyway, we've just found out that I'm pregnant. Should have been such a happy time but it's really just mixed emotions. Thankfully we had talked about it a bit, but the timing has just thrown everything off as we weren't expecting it. But I've seen how much pain it causes him worrying about it and what will happen to me, and we're absolutely together in that we don't want to out our children through that.

Managed to get an appointment sorted quickly with the GP who referred us to see a counsellor. He talked us through the various options, but apparnetky it's complicated by the fact that we don't know if his father was affected and there's no way of finding out. He asked if it would be possible to get a blood sample, but have no idea how we could track him down, or if he would allow it (which apparently makes some of the tests impossible).

So it basically seems like our only option is for him to get a test (and to do it quickly), and then to test the baby and see if it's ok. Don't want to think about what will happen if not. He has never wanted the test and desperately didn't want him to have to find out (although clearly if a baby was found to be affected that would be bad news for him). But was hoping they could just test the baby and go from there.

Sorry for long message. Appreciate any ideas people have. We're just at wits ends. And really worried for him if the test gives the wrong result. Thansks so much.
JaneD is offline   Reply With Quote
Old 05-03-17, 12:00 AM   #2
Crystal
Approved Member
 
Join Date: Sep 2015
Posts: 212
Default Re: Feeling lost - CVS without confirmed diagnosis (or history)

Quote:
Originally Posted by JaneD View Post
Hi everyone

Have spent a while reading and really upliffted by reading stories on here and how everyone helps each other out.

Our world has been turned upside down over the last week or so

Weve known for a while my hubby was at risk of HD, but it's always been a vague gray cloud hanging out there. His father left his mum with 2 young boys (he doesn't really remember him) and she brought them up herself. His mum told us both before we got married that his father's mother had HD and so he was potentially at risk. I really respect her for telling us before we got married, can't have been easy at all for her and pleased to say we have a great relationship (which is great caus hubby has always been sensisitive about the rejection he feels from his father leaving). The thing is that was pretty much all she knew and she hasn't heard from him for years - slimy lowlife.

Anyway, we've just found out that I'm pregnant. Should have been such a happy time but it's really just mixed emotions. Thankfully we had talked about it a bit, but the timing has just thrown everything off as we weren't expecting it. But I've seen how much pain it causes him worrying about it and what will happen to me, and we're absolutely together in that we don't want to out our children through that.

Managed to get an appointment sorted quickly with the GP who referred us to see a counsellor. He talked us through the various options, but apparnetky it's complicated by the fact that we don't know if his father was affected and there's no way of finding out. He asked if it would be possible to get a blood sample, but have no idea how we could track him down, or if he would allow it (which apparently makes some of the tests impossible).

So it basically seems like our only option is for him to get a test (and to do it quickly), and then to test the baby and see if it's ok. Don't want to think about what will happen if not. He has never wanted the test and desperately didn't want him to have to find out (although clearly if a baby was found to be affected that would be bad news for him). But was hoping they could just test the baby and go from there.

Sorry for long message. Appreciate any ideas people have. We're just at wits ends. And really worried for him if the test gives the wrong result. Thansks so much.
Hello Jayne.....just wanted to say welcome to the MB. Sometimes, replies to a post do not come forward, because others do not perhaps know what advice to offer, or feel uncertain as to how to respond, as in my case. I have read your post several times and find myself still unable to offer you anything that could possibly help you in this really distressing time. You, yourself have pointed out options....have received counselling and will have much soul-searching to endure. Sadly, the time comes when HD is present somewhere in our lives, when some decisions made previously (such as whether to test or not) have to be 'revisited'.!The 'goalposts' change and sometimes, decisions may have to change too. Many will say there will be no right or wrong decisions made in the context of HD.....just extremely hard, often heartbreaking decisions....but personal to each and everyone involved. This message board serves to support, offer advice when we can, encourage others to seek appropriate help from professionals involved in HD etc.etc. and sometimes we can only understand and listen, but not know how to always offer any more.

I do hope, however, that there may be others who may be able to respond to you, but should this not happen, do still stay 'on board ' and share your thoughts, emotions, hopes and fears, etc.....it may even help you both reach any decisions that may, or may not even, need to be made, just by sharing them here.

Crystal
Crystal is offline   Reply With Quote
Old 05-03-17, 07:10 AM   #3
JaneD
New Member
 
Join Date: Mar 2017
Posts: 2
Default Re: Feeling lost - CVS without confirmed diagnosis (or history)

Thanks so much for your reply, I completely understand. Reading what I wrote again, it was all quite rambling, but I think I just needed to get it all out.

What I was wondering was whether what we're being told sounds sensible? They've basically said that Ben has to have the test, or we can't test the baby. I'm about 8 weeks now, so we basically have to make a decision now, so the results come back in time to do a CVS.

Has anyone else heard of anything like this before?

Quote:
Originally Posted by Crystal View Post
Hello Jayne.....just wanted to say welcome to the MB. Sometimes, replies to a post do not come forward, because others do not perhaps know what advice to offer, or feel uncertain as to how to respond, as in my case. I have read your post several times and find myself still unable to offer you anything that could possibly help you in this really distressing time. You, yourself have pointed out options....have received counselling and will have much soul-searching to endure. Sadly, the time comes when HD is present somewhere in our lives, when some decisions made previously (such as whether to test or not) have to be 'revisited'.!The 'goalposts' change and sometimes, decisions may have to change too. Many will say there will be no right or wrong decisions made in the context of HD.....just extremely hard, often heartbreaking decisions....but personal to each and everyone involved. This message board serves to support, offer advice when we can, encourage others to seek appropriate help from professionals involved in HD etc.etc. and sometimes we can only understand and listen, but not know how to always offer any more.

I do hope, however, that there may be others who may be able to respond to you, but should this not happen, do still stay 'on board ' and share your thoughts, emotions, hopes and fears, etc.....it may even help you both reach any decisions that may, or may not even, need to be made, just by sharing them here.

Crystal
JaneD is offline   Reply With Quote
Old 05-03-17, 05:48 PM   #4
Crystal
Approved Member
 
Join Date: Sep 2015
Posts: 212
Default Re: Feeling lost - CVS without confirmed diagnosis (or history)

Quote:
Originally Posted by JaneD View Post
Thanks so much for your reply, I completely understand. Reading what I wrote again, it was all quite rambling, but I think I just needed to get it all out.

What I was wondering was whether what we're being told sounds sensible? They've basically said that Ben has to have the test, or we can't test the baby. I'm about 8 weeks now, so we basically have to make a decision now, so the results come back in time to do a CVS.

Has anyone else heard of anything like this before?
Hi again Jane.. No problem re rambling, as I said that's what this MB is for 'to get it all out'! did understand the really difficult choices that are facing you and as you pointed out, the need for making a decision is now on testing. I have no personal knowledge of knowing whether the information you have been given is correct, but I feel sure others may have some answers for you..... hope they can get back to you on this MB very soon! Have you been in touch with your Specialist HD Advisor for your area or spoken directly with anyone else from the HDA?
Crystal is offline   Reply With Quote
Old 06-03-17, 12:21 PM   #5
Sarah89
New Member
 
Join Date: Mar 2017
Posts: 1
Default Re: Feeling lost - CVS without confirmed diagnosis (or history)

Quote:
Originally Posted by JaneD View Post
Hi everyone

Have spent a while reading and really upliffted by reading stories on here and how everyone helps each other out.

Our world has been turned upside down over the last week or so

Weve known for a while my hubby was at risk of HD, but it's always been a vague gray cloud hanging out there. His father left his mum with 2 young boys (he doesn't really remember him) and she brought them up herself. His mum told us both before we got married that his father's mother had HD and so he was potentially at risk. I really respect her for telling us before we got married, can't have been easy at all for her and pleased to say we have a great relationship (which is great caus hubby has always been sensisitive about the rejection he feels from his father leaving). The thing is that was pretty much all she knew and she hasn't heard from him for years - slimy lowlife.

Anyway, we've just found out that I'm pregnant. Should have been such a happy time but it's really just mixed emotions. Thankfully we had talked about it a bit, but the timing has just thrown everything off as we weren't expecting it. But I've seen how much pain it causes him worrying about it and what will happen to me, and we're absolutely together in that we don't want to out our children through that.

Managed to get an appointment sorted quickly with the GP who referred us to see a counsellor. He talked us through the various options, but apparnetky it's complicated by the fact that we don't know if his father was affected and there's no way of finding out. He asked if it would be possible to get a blood sample, but have no idea how we could track him down, or if he would allow it (which apparently makes some of the tests impossible).

So it basically seems like our only option is for him to get a test (and to do it quickly), and then to test the baby and see if it's ok. Don't want to think about what will happen if not. He has never wanted the test and desperately didn't want him to have to find out (although clearly if a baby was found to be affected that would be bad news for him). But was hoping they could just test the baby and go from there.

Sorry for long message. Appreciate any ideas people have. We're just at wits ends. And really worried for him if the test gives the wrong result. Thansks so much.

Hi Jane.

I completely understand how difficult this is for you. So many emotions. I have been in a similar situation and we too knew that we didn't want to have a child at risk. I know that this is a personal decision to make.

I found out that my Dad had HD and my 50/50 risk whilst I was pregnant. I had no idea HD was in our family. After talking our options through with the genetics team my partner and I decided that we would test our pregnancy directly for the HD gene and not test myself. It meant that we had a 75% chance that the pregnancy would be unaffected and it would therefore give me more time to think about whether I want to test myself. It did however mean that we were faced with the chance of having a double blow of bad news with our baby having the gene and knowing it would have come from me, so I had the gene also. It's something we had to seriously consider!!

I didn't have the test and we tested our pregnancy directly for the gene via CVS. We were fortunately blessed with good news that our baby was HD free. It was an extremely difficult time and I cannot begin to imagine how different things could have been. However it is the most amazing feeling to know our boy is unaffected and doesn't have to live a life at risk! I'm also glad that I didn't test at that point as thinking more about it I don't want to know my HD status just yet.

I remain untested and I'm currently 9 weeks pregnant with a CVS booked at the end of the month. This time we are going down the exclusion test route as we want to avoid finding out if I have the gene.

Sending you positive thoughts!

Sarah x
Sarah89 is offline   Reply With Quote
Reply

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off

Forum Jump


All times are GMT +1. The time now is 11:52 AM.


About the HDA Message Board

A UK-based forum for people whose lives are affected by Huntington's disease and wish to share their experiences with others. Moderated by SHDAs from the HDA, a UK registered charity.

Please Remember

The HDA Message Board is not a substitute for professional advice. Consult a relevant professional before making decisions that could affect you or others.

Donate to HDA


Powered by vBulletin® Version 3.8.5
Copyright ©2000 - 2017, Jelsoft Enterprises Ltd.
Registered Charity No. 296453. Website Content © HDA 2010

HDA