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

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Old 04-07-16, 04:26 PM   #1
Inca
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Default Baby decisions

Hi
This is my first post and I'm writing in the hope that it'll make me feel less alone while struggling to come to terms with our situation.

My husbands father was diagnosed as HD positive in 2014. We had been discussing starting to try for a baby at this point but put it on hold because of the news. In 2015 we started down the IVF/PGD route, particularly as my husband didn't want to know whether he carried the gene defect.

Sadly the tests we had during the process showed that I (at 40 years old), didn't have enough eggs to do IVF/PGD. It just wasn't possible to start with only 1 or 2 eggs, get them fertilised, stick them with a needle to collect DNA, and still have anything left for implantation. This absolutely broke my heart. It took me a long time to admit how much I wanted children, and wanted us to be a family, and it was a shock that my body had betrayed me when we thought we had found a solution.

My husband then decided to have the test, in part so we could try and conceive naturally if he was negative. Although I didn't have enough eggs for IVF/PGD, there was a (much reduced, slim) chance I could conceive naturally.

We got the test results last week and they were positive; I'm bereft about hubby and about the child we won't have.

Before the test I was adamant that if it was positive we wouldn't try and conceive - I wasn't going to risk passing it on - but now I'm all confused with my heart desperately trying to find some hope to cling on to, but my head still believing that it would be unethical to have a child knowing that they have a 50% chance of having the gene, and, at some point, would have to watch their father slowly deteriorate.

I know that even if we did try, I have a low likelihood of conceiving, but I'm finding it so hard to accept that I can't have a child. I so desperately want something of both hubby and I.

I don't want to go down the CVS/amnio route as I don't think I could abort when I would have been lucky to conceive and maybe not able to conceive again.

If hubby's Dad hadn't got diagnosed when he did, we would have carried on and tried to conceive a few years ago. And, indeed, hubby's nephews were all born well before the diagnosis and therefore are at risk. But the knowledge brings responsibility and that's really confusing.

What I really want, but can't have, is for someone to give me permission to try and conceive naturally. In lieu of that, I would really appreciate your thoughts and experiences - is it selfish and unethical to try and conceive knowing that hubby has the HD gene defect?
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Old 04-07-16, 06:27 PM   #2
Gabby
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Default Re: Baby decisions

Quote:
Originally Posted by Inca View Post
Hi
This is my first post and I'm writing in the hope that it'll make me feel less alone while struggling to come to terms with our situation.

My husbands father was diagnosed as HD positive in 2014. We had been discussing starting to try for a baby at this point but put it on hold because of the news. In 2015 we started down the IVF/PGD route, particularly as my husband didn't want to know whether he carried the gene defect.

Sadly the tests we had during the process showed that I (at 40 years old), didn't have enough eggs to do IVF/PGD. It just wasn't possible to start with only 1 or 2 eggs, get them fertilised, stick them with a needle to collect DNA, and still have anything left for implantation. This absolutely broke my heart. It took me a long time to admit how much I wanted children, and wanted us to be a family, and it was a shock that my body had betrayed me when we thought we had found a solution.

My husband then decided to have the test, in part so we could try and conceive naturally if he was negative. Although I didn't have enough eggs for IVF/PGD, there was a (much reduced, slim) chance I could conceive naturally.

We got the test results last week and they were positive; I'm bereft about hubby and about the child we won't have.

Before the test I was adamant that if it was positive we wouldn't try and conceive - I wasn't going to risk passing it on - but now I'm all confused with my heart desperately trying to find some hope to cling on to, but my head still believing that it would be unethical to have a child knowing that they have a 50% chance of having the gene, and, at some point, would have to watch their father slowly deteriorate.

I know that even if we did try, I have a low likelihood of conceiving, but I'm finding it so hard to accept that I can't have a child. I so desperately want something of both hubby and I.

I don't want to go down the CVS/amnio route as I don't think I could abort when I would have been lucky to conceive and maybe not able to conceive again.

If hubby's Dad hadn't got diagnosed when he did, we would have carried on and tried to conceive a few years ago. And, indeed, hubby's nephews were all born well before the diagnosis and therefore are at risk. But the knowledge brings responsibility and that's really confusing.

What I really want, but can't have, is for someone to give me permission to try and conceive naturally. In lieu of that, I would really appreciate your thoughts and experiences - is it selfish and unethical to try and conceive knowing that hubby has the HD gene defect?

Hi Inca noone can tell you what to do you both have to live with your decision no one else . I think there are various options look into all before making your decision and also how you would deal / feel with children possibly having HD pro's and con's . I can't help much as only my step daughter is at risk but even as a step mum I can see her pain and worry .
I am sure others will have more experience of this

good luck

Take care

Gabby
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Old 04-07-16, 10:44 PM   #3
toosh
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Default Re: Baby decisions

Quote:
Originally Posted by Inca View Post
Hi
This is my first post and I'm writing in the hope that it'll make me feel less alone while struggling to come to terms with our situation.

My husbands father was diagnosed as HD positive in 2014. We had been discussing starting to try for a baby at this point but put it on hold because of the news. In 2015 we started down the IVF/PGD route, particularly as my husband didn't want to know whether he carried the gene defect.

Sadly the tests we had during the process showed that I (at 40 years old), didn't have enough eggs to do IVF/PGD. It just wasn't possible to start with only 1 or 2 eggs, get them fertilised, stick them with a needle to collect DNA, and still have anything left for implantation. This absolutely broke my heart. It took me a long time to admit how much I wanted children, and wanted us to be a family, and it was a shock that my body had betrayed me when we thought we had found a solution.

My husband then decided to have the test, in part so we could try and conceive naturally if he was negative. Although I didn't have enough eggs for IVF/PGD, there was a (much reduced, slim) chance I could conceive naturally.

We got the test results last week and they were positive; I'm bereft about hubby and about the child we won't have.

Before the test I was adamant that if it was positive we wouldn't try and conceive - I wasn't going to risk passing it on - but now I'm all confused with my heart desperately trying to find some hope to cling on to, but my head still believing that it would be unethical to have a child knowing that they have a 50% chance of having the gene, and, at some point, would have to watch their father slowly deteriorate.

I know that even if we did try, I have a low likelihood of conceiving, but I'm finding it so hard to accept that I can't have a child. I so desperately want something of both hubby and I.

I don't want to go down the CVS/amnio route as I don't think I could abort when I would have been lucky to conceive and maybe not able to conceive again.

If hubby's Dad hadn't got diagnosed when he did, we would have carried on and tried to conceive a few years ago. And, indeed, hubby's nephews were all born well before the diagnosis and therefore are at risk. But the knowledge brings responsibility and that's really confusing.

What I really want, but can't have, is for someone to give me permission to try and conceive naturally. In lieu of that, I would really appreciate your thoughts and experiences - is it selfish and unethical to try and conceive knowing that hubby has the HD gene defect?
Hi
Welcome to the board.

My own experience was finding out my mother-in-law had HD and rhat my hubby was at risk 50/50. At that time there was no internet to do research.
We made the decision not to have children as 50/50 odds were just too high for us ( at that time hubby wasn't tested)
He has since tested positive so hindsight being what it is it was thee right decision for us.


As Gabby says no-one can make the decision for you
Perhaps mother nature will play a part and the decision may be out of your hands??
Wish you the best of luck with everything
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Old 05-07-16, 11:17 AM   #4
shiraz
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Default Re: Baby decisions

Inca
Maybe you need time to come to terms with your husbands diagnosis? Time to consider how you would feel in years to come if your child did indeed inherit the hd gene....indeed you would worry about it forevermore.

I don't have children and am glad of that now that I know my husband has hd - I would have hated the thought that I'd possibly passed this awful disease on. Alls I can say is that there is an enjoyable life to be had without having a child, thereagain that's easy for me to say as I was never maternal and have busied myself having pets. You can also be close, for instance, to nephews, nieces, children of your friends so that your life need not be void of children.....you'll get all the pleasure and none of the pain! Seriously, think hard. x
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Old 07-07-16, 06:57 AM   #5
Inca
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Default Re: Baby decisions

Thanks everyone. Food for thought, and really nice to know that others have been faced with similar decisions.
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Old 03-08-16, 10:16 AM   #6
wanda the mermaid
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Default Re: Baby decisions

Hiya Inca
It is a difficult decision and only you can decide.
Lots of luck either way.
If you look at it that it is natures way. You can have a good life like Shraz says without children.
Sometimes it is the frustration of not being able to have what you want to have that can cause frustration. Especially if you have friends with children who you see all the time.
You can always "borrow" your nieces and nephews. It will be nice to take them back and relax too.
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Old 16-08-16, 02:17 PM   #7
Bell
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Default Re: Baby decisions

H Inca, we could be twins, my story is almost identical. What I wanted to add was unfortunately, no one can make this decision for you and there is no 'permission'. I was desperately looking for this too but the only people that can make the decision and find permission, a solution etc are you and our husband. And whatever that decision is, it'll be right for you, regardless of what anyone else thinks. My husband and I have been having genetic counselling to help us work through things and help to make decisions and this has been SO helpful. Our core beliefs, assumptions etc have really been challenged, some have stayed the same and some have changed. But without a doubt it's brought us even closer together and given us permission to discuss it openly, freely, without judgement and in a really safe environment. So I would definitely recommend this. Feel free to private message me if you want to discuss anything further and I'll look out for any future posts too - good luck whatever you decide x
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Old 19-08-16, 10:29 PM   #8
Swoona
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Default Re: Baby decisions

Inca,

I second what Bell has written word for word, I too could be your twin.

I have felt all that you are feeling, the weight of the responsibility of 'knowing' and looking for someone to okay my choices. I too have gone through genetic counselling with my husband and I reckon it's not the last of it, it's something I will continue to do on and off. I also have nieces and nephews conceived only a few years ago when when we didn't know if the diagnosis.

Like Bell, feel free to message me. It's hard to talk about with people as I think it is so complex that if it isn't staring you in the face you cannot fully comprehend it.

There is no right or wrong, it is a choice. I can't say that enough.

Feel free to get in touch.

K x
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Old 28-08-16, 02:09 AM   #9
i.wonder
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Default Re: Baby decisions

Hey Inca,

I'm sorry that your going through such a tough time, its so hard isn't it?!?!? I too am currently being tested for hd as I am currently at risk and would love to have a family. I am awaiting my test results as we speak but have known about the disease being in the family for nearly 10 years now, so have had alot of time to reach acceptance and to mull things over. I want to go down the route of pgd but I thought id offer you the other coin toss, so to speak, as no one else has.

I too, like so many others, was adamant that I would not have children naturally if I had the gene and go down the pgd route and if that failed I would not have children, as surely that would make me an awful person...hmmm. People are very quick to tell you it would be irresponsible to do so but not many are put in the same impossible decision that you have had to make - many have had the joy of watching their children grow before discovering that the gene even existed in their family. I'm afraid that the only person that can come to peace with the decision is you and your partner.

If my mum had known about the illness and the science was available (pgd) then I, quite frankly, probably wouldnt be here typing this message to you. Those who say they would not risk the chance, are effectively saying that my life would have been filled with misery and illness - which is the complete opposite to the 30 years of wonder I have had so far. I have travelled the world, seen those less fortunate than myself, found the love of my life and have had a life filled with laughter and love. Yes, my mum has this awful illness and I face the possibility myself of inheriting it, but I have reached a peace in that situation. Surely i should count all my blessings and if I can make it to 60 before I start a sharp decline then I shall be grateful of that - I have seen friends and family members suffer and die from other illnesses way before then.

It is a strange time for women who have become aware of this illness in their family. The progression of science in the last 20 years, providing a test for a gene where we can know the end outcome with so many unknowns, treatments or cures has put us in an ethically impossible dilemma. Some could argue that the actual test is unethical? When I went to the Drs to finally ask for the test, now that I feel ready to start a family, I was doing so to give my future children the best start in life - why else would I get the ****** test done (see not irresponsible after all) my doctor said to me "please, please, don't have children. This is such an awful illness and the only way to stop it is to stop the succession of the gene". This is some persons OPINION on your future decisions, not your own. If a doctor had said this to someone who had a child at risk of autism, chrons disease or to someone who had beaten cancer it would have been a scandal. Remember what YOUR human rights are and that you will decide what's best for you and your family. Could you offer more to a child than a faulty gene.

It is such a natural instinct to want to have children, and it can be so hard to just cross it off. When did we as a society become so afraid if the inevitabilty of death or illness. Does a disables child not experience moments of joy and happiness? Do they not add any value or worth to society? Is the risk not worth a shot at life? Can you experience joy, acceptance and peace before an illness takes hold?

Maybe I have been watching too much Brian cox and David Attenborough programmes but the wonders of the world never cease to amaze me. And in the grand scheme if things, I am the tiniest insignificant part of the universe, time - past and future. I'm 50% at risk and blessed to see and experience these wonders - THAT is what i want to pass on to my children.

Enough blathering from me, i hope you can smile about it all again! Life is fir living.
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Old 28-08-16, 10:58 AM   #10
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Default Re: Baby decisions

Please excuse all those typos!
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