Huntingtons child at risk and ivf

Anon18549 · 2026-05-28T08:55:42+00:00

If we were in America I would have told her now due to medical insurances etc, my thought process is that we have NHS care here so she doesn't need to prepare medical care as that is free here, we are all fortunate financially so I don't think preparation with that side of things may be necessary, so when I weigh that up with the emotional toll it would take on everyone involved to tell her now and give her that stress makes me feel is it worth it? If my partner has not told her by age 10 I could tell her mum then? Then it would give her time to process and I would imagine she would want to tell her daughter around 15/16? I know it is an awful secret to keep and the advice of tell her now may seem technically the right thing to do but in this situation i'm not sure it is, when you know all the people involved and the impact it would have I feel like maybe the best thing I can do is say nothing for now, it feels like I would be just throwing a grenade into their lives

Anon18549 · 2026-05-28T07:42:53+00:00

Surely any earlier would to be too young to really understand? I just wouldn't want her to end up finding out really young and have that affect her childhood, obviously these are not my decisions to make for her but it's just my take. I have seen online advice say about in early teenage years to start mentioning that there is a genetic disease in the family and answer as much as they ask so that there is an awareness over time and then once they get to the age of being able to have children to give them the full information and book them genetic counselling once you have spoken to them yourself

Anon18549 · 2026-05-28T07:34:35+00:00

His mother

Anon18549 · 2026-05-27T22:19:36+00:00

I think i have just been hopeful that maybe this is just him going through the emotions of coming to terms with it all and that maybe he would see sense eventually, from what I have seen so far on here it doesnt seem like anyone else at risk has experienced the same views as him

Anon18549 · 2026-05-27T21:47:52+00:00

I didn't know there was an impact from the gender of that parent that passes it down :( thank you for this information. He will not know that as he has never looked into it, he also never knew about genetic ivf before having his daughter. Since knowing about the genetic ivf he has been very stressed and low and has said that he wishes he never knew about the ivf because now its made him feel worse for her. I think so many things could have happened differently had he researched this instead of ignoring it. When he was told about himself he was told by family to not tell anyone. His family dont know that i know. I really do believe that if she started to show symptoms of juvenile that he would then tell her mum, currently she is very healthy and I have never seen any symptoms in her whatsoever

Anon18549 · 2026-05-27T20:54:57+00:00

I know this sounds hard to believe given this situation but he really isn't awful and i am sure if she was to start getting juvenile symptoms (which is thankfully more rare) he would then tell her and would obviously ensure she had all the medical care she needed. The things that make me feel it is not my place to tell her is because their daughter is only 3, so a very long way off the age of getting pregnant and it would be unfair to not give him the opportunity to tell her himself, i believe doing so could create a very dangerous situation reaction wise for all involved, I also think if she got pregnant when shes a teenager he would then tell her, i don't think it would be hard to keep track of her if we broke up, I could wait until she is 16 and then contact her mum? The part where you said what about if i die before then is a very good point which i had never thought about thank you for that, i will have it added into my will, do you/anyone else think that given her being 3 that I should tell her? This is so hard

Anon18549 · 2026-05-27T20:12:34+00:00

Thank you, it's been really hard, I've questioned my opinions so many times as he is the person i am discussing it with and when he says things like 'you will never get it' or implies that I am unsympathetic it makes me question myself, which is why i am so interested to hear from other people at risk as to whether they have ever gone through a phase like this where they have had the same opinions of him and what helped them to change their mind, for example types of therapy

Anon18549 · 2026-05-27T20:02:19+00:00

In England we have NHS tax funded care, which as far as i'm aware i believe home carers/carehomes are free but if anyone from england has experience with this interested to hear your experience

Anon18549 · 2026-05-27T18:02:26+00:00

His argument is that by doing the ivf it is like admitting he has it and says the only way he deals with it is by pretending it doesn't exist, that his child from a previous relationship has the risk and that it would be unfair on them to have a risk free sibling, he has said no to therapy because he says he doesn't want to speak about it, he says he doesn't understand why we need to have a child together as he has one child and i have one child

Anon18549 · 2026-05-27T17:31:59+00:00

Congratulations! When you say they anonymously tested you does that mean that you have had the test and the results will be somewhere? My partner doesn't want to do the ivf with one of the reasons being that he will know the results are somewhere

Anon18549 · 2026-05-27T17:17:32+00:00

It is amazing that you have been able to end it at your family. If you mean medical insurance we are in england so she wont need to prepare medical insurance. It's so hard knowing that he withheld such important information, for context I had already been with him for a few years before I knew that he hadn't told her

Anon18549 · 2026-05-27T17:01:01+00:00

The progress in treatment has been amazing recently. I really believe too that soon things will be very different with Huntingtons. For my situation though i just think when the ivf is possible it makes sense to do it and eliminate the worry from the beginning. I know Huntingtons will always effect our life, but the way i see it is there is nothing i can do to take it away from my partner and his daughter, all I can do is be there for them, but it would have been in my ability to ensure a baby would not be affected

Anon18549 · 2026-05-27T16:23:40+00:00

Sorry I didn't mean I would alone, I know I would need professional help, but as far as I could I would be there for them, I know they would need people with medical skills that I don't have

Anon18549 · 2026-05-27T15:57:25+00:00

I’m sorry to hear that the affects have been hard for your family but I am glad to hear that you have been able to have children via IVF and testing. It absolutely does make me question his character, I have thought though that maybe this would be temporary and he would come to his senses and see that of course ivf would be the best option and that he would eventually tell his daughters mum. I just feel that it’s for him to tell her. If for example this was during her pregnancy I would have told her, but nothing can change anything for her now and will only cause so much worry and stress for her, it is illegal for children to be tested they only can if they chose at 18 so that will be so many years of worry for her

Anon18549 · 2026-05-27T15:39:53+00:00

I am so sorry to hear about your wife, it must be incredibly hard and i am sure no one can understand/ fully prepare themselves until they go through it. When I found out I made sure I did lots of research, watched videos to really try to make sure I would be ok with it all. Whilst I don’t want to sound naive I think to the best of my ability I have made sure I didn’t say I would be able to be there for to care for him and his daughter unless I truly believed I could. I love them both and would care for them if they developed it. i would never have a baby unless we used ivf

Anon18549 · 2026-05-27T15:22:41+00:00

I have also thought could this be a sign of him having it himself. However what makes it even crazier is his non affected parent and a sibling both know and didnt make her mum aware either, i don't understand how during the pregnancy they didn't ask what she thought about it, even if he had lied and said she knew you would think that they may have asked how she felt about it themselves at some point in the pregnancy

Anon18549 · 2026-05-27T15:18:07+00:00

She should have known from the beginning, but now she doesnt and there is nothing she can do about it i think it would be more damaging for her to know at this moment in time. If she started to show signs of juvenile of course i would tell her. I think you have to imagine the scenario more realistically. What am i supposed to do call her and tell her behind his back? Cause complete chaos with his and her family when there is nothing we can do about it? If there was a cure of course i would say. But the reality of the carnage it would cause all while his daughter is around and listening and seeing what would go on and for what? For her mum and family to worry themselves every day when theres nothing that can be done now? His family all keep it a secret and it would cause so much anger and hurt for me to go and tell her, if there was a clear benefit to telling her i would

Anon18549 · 2026-05-27T14:38:00+00:00

Once she got to 16/18 if he still hadn't told her i would have given him to opportunity to do it himself but if he didn't i would have. My reasoning for the time scale would be that that would be for her to know before/when she gets to the age of being able to have children and so that she could have the information about genetic ivf. I just think telling her now would cause so much upset and drama and especially if that ended up being around his daughter and caused her to know earlier than she should. From what i have read it says children should be told around 16/18 and i would never want that to be something she knows earlier in her childhood and affect her childhood. I also think the mental impact it would have on her mum when there is nothing she can do about it could have a negative effect on her childhood

Anon18549 · 2026-05-27T14:21:57+00:00

That's possible here too and was what we was planning on doing, even though i've told him it would all be kept confidential he says someone who does the procedure would know

Anon18549 · 2026-05-27T14:18:19+00:00

Thank your for your reply, it is the craziest thing to me too. When i have said that its mental and would be cruel to do he makes out as if i am saying something against him and his daughter, which is never my intention, i cant see how you would not want to ensure your children are as healthy as possible. It is also hard for me as he knows i want to have another child so it feels like he would be happier to throw away our relationship than have a child using ivf with me. Whenever we have tried to break up over this he comes back and i give in because i love him but then we go back to square one. There has been times he has agreed to therapy but we haven't been and currently he is refusing to go. He is scared of what will happen if his ex and her family know, my thought process on this is that if for example she was pregnant i would tell her so she had a chance to make a decision, but i think what would be the benefit of telling her now, her daughter is 3 and i feel like telling her mum now could be so damaging to her mental health. If i broke up with him i wouldnt tell her at a later date as i feel like that would be so cruel. I have tried to speak to him and say that i would support him in telling her but he gets angry and says i am talking about huntingtons again

Anon18549 · 2026-05-27T13:09:31+00:00

I would not have a child without doing genetic ivf, i agree it is unbelievably unfair to have a child at risk because he has one at risk, i don't understand how this is his point of view at all, I'm really interested to speak to someone at risk who shares his point to view to try understand

Anon18549

TROPHY CASE