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

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Old 03-09-16, 12:02 AM   #21
jaq
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Default Re: Baby decisions

Emotive subject .
I have in front of me a copy of a letter to the British Medical Journal written in 1968 titled Huntington's chorea and Pregnancy .
I quote "with the hereditary pattern being so definite,current thinking is that patients with Huntington's chorea should not marry without the full knowledge of their partners ,and should not produce offspring "
It goes on to discuss the impact of the disease on families and asks how patients could
"Hope for more peaceful acceptance . Including the possibility of sterilisation "
A letter to the BMJ in 1978 titled Predictive Tests in Huntington's Chorea imagines the possibility of predictive resting which subsequently became available with the discovery of the gene in 1993 . Again guidance re sterilisation is discussed .

The letter is written from Halifax by Montague Segal .

He was the medical professional in charge on my mothers treatment arguably suggesting a eugenic solution to the transmission of the faulty gene .

I am sure no one here and in the HD community would welcome a return to these not so distant times though a comment on an online newspaper article about Huntington's disease suggested the solution would be for people to 'stop breeding '!

That science is available to have children free of the HD gene however is something many on us might have chosen to persue had that option been available to us and as has been discussed many couples where one person is either at risk of HD or have the gene have chosen not to have children a decision not taken lightly or with out heartbreak for many .

However what the reproductive science and options has not changed is the impact of a child living in a family where one of the parents will develop of has HD . As has been said life for any child is difficulty we all might face illness or disease or we might be hit by the proverbial bus . These fortunately are ifs and buts and maybe but an HD positive parent it is a definite that at some time in the future they will not be able to look after a child hopefully it will be at an old age where the children are grown up and settled but because of the nature of the disease and the age that symptoms begin it is often at an earlier stage in a child's life .

I was unlucky in my HD life mum died when I was 12 and my brother was just six I wonder if Segal was writing about my family as I suspect now she was ill
When Mark was born . Our father did not stick around leaving our care to my nana who as 72 when Mark was born she watched her husband then both her children die of HD .

Mum spent the last few months in the local asylum I was the only girl in school whose parents were not together and whose mum a beautiful educated talented teacher now falling down in the street and spilling food and not clean despite the efforts of my nana and ultimately carted off to the looney bin a fate which I began to realise could be mine .

Children in HD families today will be visiting mums and dads in care homes unable to read them a story share a meal and do the ordinary stuff parents and children do . How ever the child is conceived they won't escape thus it's a given if the parent has the gene . My mum
Didn't see either of us graduate we did not have any of the normal rites of passage children and parents should have . I was unlucky I was young when she died . I have a longer relationship with my dentist than I had with my mum infact probably even with people on this message board .

Everyone's life is tough disease accidents etc etc etc it's just with HD the dice is loaded to make it harder . My friends still have two parents I can't imagine it just can't imagine it and as I watch HD robbing my smart kind witty brother deteriorating a little bit each day my heartbreaks and I'm thanks full he doesn't have a child who must endure the devastation HD inflicts .

With HD everyone has a different experience a different perspective some children stay in a family unit where parents stay together others are not so lucky and perhaps more so if it is the mother who will develop the disease and the father has left have a less stable childhood .

The options to stop future generations inheriting the gene present couples with the opportunity to have HD free babies but a baby born to a parent with the genre will sadly not have a life free of HD .

We live at a time where we are free to make these choices for ourselves and each and everyone of us exposed to Huntington's as a partner , child , sibling , parent ,etc has a different experience and thus will influence the choices we make .

The fight in this life we have brought together because of HD is with HD . The financial support families get , the care our loved ones get , the accessibility to treatments and therapies in the future .

It is hard enough fighting all of this and the mutation which prevents us making the carefree reproductive choices those with out HD are fortunate to have .

With love X




Sent from my iPhone
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Old 03-09-16, 09:29 AM   #22
Gabby
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Default Re: Baby decisions

[QUOTE=jaq;64005]Emotive subject .
I have in front of me a copy of a letter to the British Medical Journal written in 1968 titled Huntington's chorea and Pregnancy .
I quote "with the hereditary pattern being so definite,current thinking is that patients with Huntington's chorea should not marry without the full knowledge of their partners ,and should not produce offspring "
It goes on to discuss the impact of the disease on families and asks how patients could
"Hope for more peaceful acceptance . Including the possibility of sterilisation "
A letter to the BMJ in 1978 titled Predictive Tests in Huntington's Chorea imagines the possibility of predictive resting which subsequently became available with the discovery of the gene in 1993 . Again guidance re sterilisation is discussed .

The letter is written from Halifax by Montague Segal .

He was the medical professional in charge on my mothers treatment arguably suggesting a eugenic solution to the transmission of the faulty gene .

I am sure no one here and in the HD community would welcome a return to these not so distant times though a comment on an online newspaper article about Huntington's disease suggested the solution would be for people to 'stop breeding '!

That science is available to have children free of the HD gene however is something many on us might have chosen to persue had that option been available to us and as has been discussed many couples where one person is either at risk of HD or have the gene have chosen not to have children a decision not taken lightly or with out heartbreak for many .

However what the reproductive science and options has not changed is the impact of a child living in a family where one of the parents will develop of has HD . As has been said life for any child is difficulty we all might face illness or disease or we might be hit by the proverbial bus . These fortunately are ifs and buts and maybe but an HD positive parent it is a definite that at some time in the future they will not be able to look after a child hopefully it will be at an old age where the children are grown up and settled but because of the nature of the disease and the age that symptoms begin it is often at an earlier stage in a child's life .

I was unlucky in my HD life mum died when I was 12 and my brother was just six I wonder if Segal was writing about my family as I suspect now she was ill
When Mark was born . Our father did not stick around leaving our care to my nana who as 72 when Mark was born she watched her husband then both her children die of HD .

Mum spent the last few months in the local asylum I was the only girl in school whose parents were not together and whose mum a beautiful educated talented teacher now falling down in the street and spilling food and not clean despite the efforts of my nana and ultimately carted off to the looney bin a fate which I began to realise could be mine .

Children in HD families today will be visiting mums and dads in care homes unable to read them a story share a meal and do the ordinary stuff parents and children do . How ever the child is conceived they won't escape thus it's a given if the parent has the gene . My mum
Didn't see either of us graduate we did not have any of the normal rites of passage children and parents should have . I was unlucky I was young when she died . I have a longer relationship with my dentist than I had with my mum infact probably even with people on this message board .

Everyone's life is tough disease accidents etc etc etc it's just with HD the dice is loaded to make it harder . My friends still have two parents I can't imagine it just can't imagine it and as I watch HD robbing my smart kind witty brother deteriorating a little bit each day my heartbreaks and I'm thanks full he doesn't have a child who must endure the devastation HD inflicts .

With HD everyone has a different experience a different perspective some children stay in a family unit where parents stay together others are not so lucky and perhaps more so if it is the mother who will develop the disease and the father has left have a less stable childhood .

The options to stop future generations inheriting the gene present couples with the opportunity to have HD free babies but a baby born to a parent with the genre will sadly not have a life free of HD .

We live at a time where we are free to make these choices for ourselves and each and everyone of us exposed to Huntington's as a partner , child , sibling , parent ,etc has a different experience and thus will influence the choices we make .

The fight in this life we have brought together because of HD is with HD . The financial support families get , the care our loved ones get , the accessibility to treatments and therapies in the future .

It is hard enough fighting all of this and the mutation which prevents us making the carefree reproductive choices those with out HD are fortunate to have .

With love X




Sent from my iPhone[/QUOTE

This is so true and straight from the heart <3 x

Gabby
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Old 03-09-16, 10:14 AM   #23
Trish
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Default Re: Baby decisions

Quote:
Originally Posted by jaq View Post
Emotive subject .
I have in front of me a copy of a letter to the British Medical Journal written in 1968 titled Huntington's chorea and Pregnancy .
I quote "with the hereditary pattern being so definite,current thinking is that patients with Huntington's chorea should not marry without the full knowledge of their partners ,and should not produce offspring "
It goes on to discuss the impact of the disease on families and asks how patients could
"Hope for more peaceful acceptance . Including the possibility of sterilisation "
A letter to the BMJ in 1978 titled Predictive Tests in Huntington's Chorea imagines the possibility of predictive resting which subsequently became available with the discovery of the gene in 1993 . Again guidance re sterilisation is discussed .

The letter is written from Halifax by Montague Segal .

He was the medical professional in charge on my mothers treatment arguably suggesting a eugenic solution to the transmission of the faulty gene .

I am sure no one here and in the HD community would welcome a return to these not so distant times though a comment on an online newspaper article about Huntington's disease suggested the solution would be for people to 'stop breeding '!

That science is available to have children free of the HD gene however is something many on us might have chosen to persue had that option been available to us and as has been discussed many couples where one person is either at risk of HD or have the gene have chosen not to have children a decision not taken lightly or with out heartbreak for many .

However what the reproductive science and options has not changed is the impact of a child living in a family where one of the parents will develop of has HD . As has been said life for any child is difficulty we all might face illness or disease or we might be hit by the proverbial bus . These fortunately are ifs and buts and maybe but an HD positive parent it is a definite that at some time in the future they will not be able to look after a child hopefully it will be at an old age where the children are grown up and settled but because of the nature of the disease and the age that symptoms begin it is often at an earlier stage in a child's life .

I was unlucky in my HD life mum died when I was 12 and my brother was just six I wonder if Segal was writing about my family as I suspect now she was ill
When Mark was born . Our father did not stick around leaving our care to my nana who as 72 when Mark was born she watched her husband then both her children die of HD .

Mum spent the last few months in the local asylum I was the only girl in school whose parents were not together and whose mum a beautiful educated talented teacher now falling down in the street and spilling food and not clean despite the efforts of my nana and ultimately carted off to the looney bin a fate which I began to realise could be mine .

Children in HD families today will be visiting mums and dads in care homes unable to read them a story share a meal and do the ordinary stuff parents and children do . How ever the child is conceived they won't escape thus it's a given if the parent has the gene . My mum
Didn't see either of us graduate we did not have any of the normal rites of passage children and parents should have . I was unlucky I was young when she died . I have a longer relationship with my dentist than I had with my mum infact probably even with people on this message board .

Everyone's life is tough disease accidents etc etc etc it's just with HD the dice is loaded to make it harder . My friends still have two parents I can't imagine it just can't imagine it and as I watch HD robbing my smart kind witty brother deteriorating a little bit each day my heartbreaks and I'm thanks full he doesn't have a child who must endure the devastation HD inflicts .

With HD everyone has a different experience a different perspective some children stay in a family unit where parents stay together others are not so lucky and perhaps more so if it is the mother who will develop the disease and the father has left have a less stable childhood .

The options to stop future generations inheriting the gene present couples with the opportunity to have HD free babies but a baby born to a parent with the genre will sadly not have a life free of HD .

We live at a time where we are free to make these choices for ourselves and each and everyone of us exposed to Huntington's as a partner , child , sibling , parent ,etc has a different experience and thus will influence the choices we make .

The fight in this life we have brought together because of HD is with HD . The financial support families get , the care our loved ones get , the accessibility to treatments and therapies in the future .

It is hard enough fighting all of this and the mutation which prevents us making the carefree reproductive choices those with out HD are fortunate to have .

With love X




Sent from my iPhone
Thank you for posting that Jaq. Very well put.

I'm sitting here alone as I type this. No Hubby (HD took care of that) and no children to help me carry on the Dainton gene. As you know, I asked to be sterilized before we even knew if Steve defo had the gene and was still at risk.

I don't regret taking such drastic action. I'm not suggesting in a million years eugenics is the only answer to HD being wiped out. God knows had the Nazis etc been in power when I was born I would have been euthanized for being imperfect with my height and deformities etc. Besides, as Allan outlined from his case HD has a habit of coming out of the woodwork anyway.

PGD and other options wasn't around or explained when I was looking into things in the late 80s. I was simply told we can test the baby in the womb and terminate if it looks like it has the gene. I was not a very maternal person anyway but was aware there would be a 'broody' time when it might consume me with a need to try. With that in mind, I didn't want to go through making that choice and didn't even know if they were suggesting I may have had a choice anyway. It was said so matter of fact that I assumed they were saying they would take the choice out of my hands and simply terminate which seemed brutal.

I don't have children but I do have lots of happy memories of times with Steve, who became my child in the end with the amount of love and care I needed to afford him. I became a mother by default and am extremely proud of Steve. Would I have had enough energy; time; mental capacity; love and dare I say money to have been able to look after Steve as well and children too? I'm not sure I would have if I am honest. It's sh#te that the world has been deprived of Steve's awesomeness genes in the process of not getting the potential HD genes too but I made my decision based on the info I had at the time. With hindsight I still feel I made the right decision for me and for him
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Old 04-09-16, 12:03 PM   #24
toosh
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Default Re: Baby decisions

Quote:
Originally Posted by jaq View Post
Emotive subject .
I have in front of me a copy of a letter to the British Medical Journal written in 1968 titled Huntington's chorea and Pregnancy .
I quote "with the hereditary pattern being so definite,current thinking is that patients with Huntington's chorea should not marry without the full knowledge of their partners ,and should not produce offspring "
It goes on to discuss the impact of the disease on families and asks how patients could
"Hope for more peaceful acceptance . Including the possibility of sterilisation "
A letter to the BMJ in 1978 titled Predictive Tests in Huntington's Chorea imagines the possibility of predictive resting which subsequently became available with the discovery of the gene in 1993 . Again guidance re sterilisation is discussed .

The letter is written from Halifax by Montague Segal .

He was the medical professional in charge on my mothers treatment arguably suggesting a eugenic solution to the transmission of the faulty gene .

I am sure no one here and in the HD community would welcome a return to these not so distant times though a comment on an online newspaper article about Huntington's disease suggested the solution would be for people to 'stop breeding '!

That science is available to have children free of the HD gene however is something many on us might have chosen to persue had that option been available to us and as has been discussed many couples where one person is either at risk of HD or have the gene have chosen not to have children a decision not taken lightly or with out heartbreak for many .

However what the reproductive science and options has not changed is the impact of a child living in a family where one of the parents will develop of has HD . As has been said life for any child is difficulty we all might face illness or disease or we might be hit by the proverbial bus . These fortunately are ifs and buts and maybe but an HD positive parent it is a definite that at some time in the future they will not be able to look after a child hopefully it will be at an old age where the children are grown up and settled but because of the nature of the disease and the age that symptoms begin it is often at an earlier stage in a child's life .

I was unlucky in my HD life mum died when I was 12 and my brother was just six I wonder if Segal was writing about my family as I suspect now she was ill
When Mark was born . Our father did not stick around leaving our care to my nana who as 72 when Mark was born she watched her husband then both her children die of HD .

Mum spent the last few months in the local asylum I was the only girl in school whose parents were not together and whose mum a beautiful educated talented teacher now falling down in the street and spilling food and not clean despite the efforts of my nana and ultimately carted off to the looney bin a fate which I began to realise could be mine .

Children in HD families today will be visiting mums and dads in care homes unable to read them a story share a meal and do the ordinary stuff parents and children do . How ever the child is conceived they won't escape thus it's a given if the parent has the gene . My mum
Didn't see either of us graduate we did not have any of the normal rites of passage children and parents should have . I was unlucky I was young when she died . I have a longer relationship with my dentist than I had with my mum infact probably even with people on this message board .

Everyone's life is tough disease accidents etc etc etc it's just with HD the dice is loaded to make it harder . My friends still have two parents I can't imagine it just can't imagine it and as I watch HD robbing my smart kind witty brother deteriorating a little bit each day my heartbreaks and I'm thanks full he doesn't have a child who must endure the devastation HD inflicts .

With HD everyone has a different experience a different perspective some children stay in a family unit where parents stay together others are not so lucky and perhaps more so if it is the mother who will develop the disease and the father has left have a less stable childhood .

The options to stop future generations inheriting the gene present couples with the opportunity to have HD free babies but a baby born to a parent with the genre will sadly not have a life free of HD .

We live at a time where we are free to make these choices for ourselves and each and everyone of us exposed to Huntington's as a partner , child , sibling , parent ,etc has a different experience and thus will influence the choices we make .

The fight in this life we have brought together because of HD is with HD . The financial support families get , the care our loved ones get , the accessibility to treatments and therapies in the future .

It is hard enough fighting all of this and the mutation which prevents us making the carefree reproductive choices those with out HD are fortunate to have .

With love X




Sent from my iPhone
Thanks for sharing Jaq, spot on
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Old 04-09-16, 06:28 PM   #25
Joseharry
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Default Re: Baby decisions

We thought we had the perfect lives up until 3 years ago. Nice house, strong , happy marriage , good jobs which we loved and 2 wonderful kids....then 21 and 24 years old. Then We found out that we had HD in the family and everything changed.
My Husband Roger was diagnosed with the disease in November 2013. The day I had to tell our kids they were at risk was the worst of my life. All through their lives I had protected them and suddenly they were ( and still are) at risk from HD, the most hideous of diseases.
It has blighted their lives. They both live life to the full and carry on as people their ages do....but there is always the elephant in the room....the risk of HD hanging over them.
I cannot get over the guilt I feel for having put them in this position...even though we did not know about HD being in the family until many years later.
Had I known I would not have had children who were at risk. I would have had to sacrifice my need in order to stop HD blighting another generation.
Our daughter is pregnant with an HD free baby boy. She went through the hell of CVS exclusion testing at 11 and a half weeks....it was a terrible time and we all prepared ourselves for the worst but we were very very lucky with the result.
She did say whilst waiting for the result that she didn't think she could go through it again....knowing that she would have had to terminate the pregnancy were the result different.
My personal belief is that by having a child knowingly at risk is akin to letting a baby play Russian roulette with half the bullet chambers of the gun loaded.
Our son may do things differently but my advice as a parent will be to wipe this evil disease from our family for future generations even if it means making sacrifices in this generation.
Allan, for what it's worth , I appreciate your input into this debate and think that your situation, where you had no CHOICE about your sons future is very relevant to the discussion...thank you
It all boils to choice in the end and everyone is at liberty to make those choices even though not everyone will agree with the choices made,
I do wish you all well,
Brenda x
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Old 04-09-16, 11:07 PM   #26
Cupcake
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Default Re: Baby decisions

Hi, just reading all the threads on this post, and it is such a shame it has all exploded, with frayed tempers.

Everyone has their own right to choose whether to have children or not, and whether to test for HD, obviously some families have children, before the ugly head of HD arrives. I think what we have here, is a mixture of advise from people living and dealing with HD. For some of us, we had no knowledge of HD before our children were born, me for one. I have to say that not a day goes by, without be worrying about the future of my sons. HD destroyed my husband, and he is no longer here, he died at 54 yrs, and the four years leading up to his death, were very difficult for us all, with him being hospitalised for 22 mths of that, with depression, pyschosis, and daily challenges with those things, when he was at home. The impact of it on my sons, is that they don't know their fate, and are reluctant find out as they are afraid, of how they will cope. One thing for sure though, is they will not have a baby without making sure it is HD free, that child though,most likely may see their parent struggle, the way my husband did. Until Martin was ill, I did not think about HD much, and thought it will be ok, he will just decline slowly, stop being able to walk, eat etc., and it won't be that bad. My eyes have been opened to how terrible it is to see, the person you love with all your heart, disappear before your eyes, living with it 24/7 is the most awful thing ever.i hope there will be a cure one day, but actively trying to stop this awful gene I believe is the best way forward.

Everybody will and does make the choices they believe is right for them, there is no wrong and no right, and no judgements made. Please see all the posts on here, as personal experiences being shared, as I had no experience until HD actually knocked on my door.
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Old 29-09-16, 04:38 AM   #27
Anastasia
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Default Re: Baby decisions

My father had HD and I found out I was at risk when I was 14. I had watched his health decline since I was 6. I am now 35 and tested negative 2 years ago. For 19 years I lived in fear. I watched my father struggle with the disease knowing one day I may very well be in that same situation. I never knew how to plan for the future because I never know if I would have a need for a plan. I cried so much and there were many times I wish I was not born. I wished so much that I wasn't born so I wouldn't have had to watch my father struggle, to not live my life in fear and uncertainty, and to possibly not face HD one day. HD is such a devastating disease, and being that I lived at risk for so long, I personally would not put anyone in that situation. Sure there is a 50/50 chance but I am the only family member from my dads whole side who did not inherit the gene. All three of his siblings and all 5 of my cousins and 2 of their children all had it. I have no family from that side alive today. I know there is an uproar about Allan's post, but he is being honest and realistic and I have to agree with him.
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Old 05-11-16, 05:10 AM   #28
cmiz
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Default Re: Baby decisions

Hi Inca
So very sorry you have to be here at all.
I'm Claire. My hubby has the hd gene. He is 40 now we found out about 12 years ago. His mum is 69, i met her when she was 51, and thought she was a little odd, but it was 6 years later when we got the diagnosis. By 57 she had a lot of cognitive symptoms, she is currently doubly incontinent, peg fed (feeding tube), she cannot do anything herself, (walk talk sit), she doesn't understand anything. We have had the best Carer's for her, If she had gone into a home she probably would be dead now, so I'm not sure having the best Carer's and keeping her at home has been the right thing to do, she has no life, I wouldn't want to live like this. Obviously my hubby has all this to look forward to ..... not actually sure when I write it down how we deal with this but we do! We try and ignore it how else can you carry on if you don't. Not having children was never an option for me. We had both always wanted them and the pull was too strong. There are lots of children that have crap lives, terrible parents/in care, mine are very lucky. They have a strong big loving extended family. Parents who love then so much it hurts, and they are happy. They see their Nanan, sadly they have only really ever known her Ill (they are 8 and 5), we have tentatively told them daddy may get poorly one day, I intend to drip feed it, don't want it to be a huge bombshell. But generally we have a very happy normal family life. I had three cvs tests. My little girl (inbetween the boys) had the gene and we terminated. Hardest thing I have ever done, but there was no way I was giving my child this life sentence, life is tough enough. I would love another child but I look at my beautiful boys and count my blessings. We have irradicated hd in our family. Yes me and the boys will have to see there dad suffer, but we have so many(and will have more) happy memories that we will deal with it. I wouldn't be without them for anything. They are strong happy beautiful loved children. Yes cvs is hard, but it's needs must. There are lots of people not just hd people that suffer having to make a decision based on a possible problem in pregnancy. You're not alone and certainly not in the wrong tonhave children naturally if you can, I knew I was strong enough to do the right thing and end the pregnancy if I had to. It may make me sound cold, and yes it was awful and the worst decision I've ever faced, but for me it is no decision it has to be done. I wouldn't wish hd on my worst enemy so I certainly wouldn't let my children risk it. I wish you all the luck in the world with whatever you decide. Xxxx
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Old 22-04-17, 06:54 PM   #29
KimeeS44
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Default Re: Baby decisions

Quote:
Originally Posted by i.wonder View Post
Please excuse all those typos!
Hi, this is really hard. I'm 25 and my boyfriend is at risk and getting tested currently. I have all these thoughts going through my mind. I don't react well to hormones, what if he's positive and we can't do ivf? Do I want my future to look like this or shall I run away now from the man I love. It's heartbraking. One option in my head is fostering, which would leave me childless yes but will make me feel of value and I would also have more time for him if he got sick to care for him. It's still a lot to manage but think about what you want out of having kids ? Is adoption enough? Think of the positive things you could both do if you don't have kids. And like people have said there are other options worth looking into before giving up. Talk to a genetics councillor. Talk on here. It al helps. Sending love
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Old 11-06-17, 09:47 AM   #30
Clive
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Default Re: Baby decisions

Hi - we went through something similar. My wife has a 50/50 chance of HD and doesn't want to get tested. We started the IVF process four years ago but she was diagnosed with low ovarian reserve (one doctor said her ovaries are as if she were over 40 - she was 31 then). First three attempts we would not even get a viable embryo to be tested. We changed clinics and got slightly better results but the two embryos were assessed at risk of HD. We were getting desperate and started to think about alternatives but we always said that we would not be able to live with ourselves if we made a concious decision to expose our future children to being at risk. We therefore thought of donor eggs etc. ultimately we changed the clinic for the third time, changed med protocol, lifestyle, diet we were successful after 12 IVF rounds - we were also very unlucky in getting a lot of at risk embryos. This is all a numbers game. Yes - age will deteoriate the DNA in your egg and therefore there will be a higher chance of anomalies (the embryo will not implant - aneuploidy) but you can still get there as everything else works fine. So please don't give up on having your baby but be prepared it may be a long journey. Best of luck!
Clive
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