What are your views about having a child knowing it could potentially grow up with a parent with HD? We would like to have a child in the future but would it be fair knowing one of the parents is 50/50 at risk of HD?

This is not about whether to have an at risk child - we have made a personal decision that we would go through PGD or CVS to prevent that happening. I know some people never had the chance to do that or knew enough about HD to know they could prevent it - that could have been us a few years ago.

Well, I'm going to post on this one. My husband has HD, 39 years old, CAG of 47, symptomatic for several years. We always knew he was at risk because it ran in his family so strongly. We made the conscious choice to use donor sperm and IVF to have children even before he was symptomatic or tested positive. Back then, when he saw a genetic counselor, the counselor strongly suggested testing if we wanted to have children. After discussing it for a very long time, and knowing his risks, we decided to take the course of action that we did even though he had no sign of the disease back then. I am very thankful now that we took the steps that we did because our twins were born premature and have their own set of health concerns.

Now, my husband is showing symptoms. He has been out of work for two years and is finally receiving social security disability. And at almost 9 years of age, our children are aware of his disease. Because no other family members with this disease are living, they have not had to witness first hand much of the disease, but we have told them the basics of it. We have also assured them that they have no chance of inheriting it. They are aware that Daddy can't do the same things like he used to, but there's still a lot that Daddy can do. And to them, he is still just Daddy. We all just accept the change and move forward. I'm sure as this disease progresses and we all deal with it together, we will all lean on each other for support.

My dad had HD- but that was back when they really didnt know what he had and he did not have meds early on. My mom just thought he was going through a change. However, now since you would know what you had and there is increased knowledge- you can live a fairly good life and receive meds when needed that help with the mood swings. I tell you that i am thankful I had my dad and I loved him HD or not. He used to do a lot of things with me - just like any other dad. I see family members with HD that are great parents and have not progressed a lot because they are positive and try to live their best life. I guess I would say have them as soon as you can so that they have many good years with you. Your kids will just be thankful to be a part of you and they will love you unconditionally. They will also not have to worry about it affecting them so that is a real bonus.
Yes it will be tough on them but we all have grown up with challenges- and it only makes us stronger. I guess you have to think of how your spouse will manage also.
Good luck- lets just pray you dont have it. Do you think you will test or no?

For me, the normal mother-daughter struggles were just slightly worse; that's all.

Lots of people grow up with parents who are sick or have other issues, and turn out fine. Others are more affected. And there are LOTS of other things that could happen to a parent besides a 50/50 risk for HD. Even if one parent has the HD gene, you could get lucky and have little/no affects until your child/ren are grown. But you should think about whether the likely-healthy parent could handle taking care of both child/ren & spouse.

I think any child should be grateful enough that he/she IS HD-free, and HERE, and has at least one likely-healthy parent.

Sara makes an excellent point. It is a lot to be the caretaker for everyone in the household. For us even though my husband is doing very well he basically gets himself to/from work (I give him a lift to the station ) and takes care of his own meds - he is still fine behind the wheel - all of which I am very grateful that he does... but I deal with ALL financial, cars, repairs, medical bills/issues, EVERYTHING for the kids, etc. - this is no longer a partnership - and that is not easy. But, that said, my kids save me. they are delicious, spectacular, filled with joy... if it was just John and I rattling around in this house both of us would have much less of a reason to do as well as we are. I think they save him too. Do you guys have family around? support system?

Thanks for all your kind replies. My husbands from the US and I am from England. We live in England in my hometown near family and friends and would have some support. Going back to the US is pretty much out the picture now because of all the health insurance issues etc. To be fair though we wouldn't have gone back anyway as we are settled in England with our jobs etc.

We are finding it very difficult to obtain income protection and critical illness. It does annoy me because in the UK there is a moratorium saying insurers can't take your genetic test results into account but then they ask about and take your family history and refuse you anyway - so effectively the moratorium is not worth the paper it is written on! We should have sorted it months ago, we knew his dad was at risk and feel very stupid for not doing so. This is eating away at us because we have potentially lost out on a monthly payment 50% of salary should my husband not be able to work. We were under the impression that they would just increase the premium if his dad's result was positive - not refuse us! Anyway, we keep telling ourselves my husband gets good benefits at work better than average should we ever need them - lets hope not.

I guess if we decide to have children we need to do it sooner rather than later. Next question I guess is PGD or CVS if we do decide to proceed.

Thanks

LJH,

Hi. What is "income protections?" Am I understanding correctly: you don't have to worry about insurance (meds, doctors, hospitalization or nursing home costs but that the "refusal" is about income? It's so different here so I just want to understand what we are missing out on.

Thanks

Hi JDuff

In England we have the NHS so you do not have to worry about medical bills because it is a social system. If you have assets like a house and need to go into a nursing home then potentially you may have to use those assets to pay for your care.

Income protection is an insurance you can take out (we were looking at taking it with Unum) where you pay a premium each month and should you become unable to work they will pay you half the salary you were earning at the time you took the policy out. Unfortunately if you have a parent with HD they won't insure you. We tried to put it in place before my father in law's results came out but theyw anted medical history from our doctors etc and so we did not get it in place in time. We were of the understanding they would just increase the premium if your parent had HD but nope they refuse to insure you.

We are waiting to see if our life cover is approved - should know today.

The next thing I am going to look at is mortgage protection so if you get sick they will pay towards your mortgage for typically 12 months. Not sure we will get that. We are about to buy a house you see.

Hope that helps. Not sure how it works in the States. My husband is a US citizen, if we ever wanted to go back we would need to check all that out. At the moment our lives; careers etc are in England.

It has been a rough week since finding out my husband is at risk, but we are getting through it. I read somewhere on here plan like you have it; live like you don't have it and I am trying to keep to that.

I am not sure though if they would take your assets to pay for nursing home costs if you had a spouse and child in there. They are trying to revise the system as at the moment it puts people off saving if they can take your assets should you need nursing home care. Because if you don't have any savings or assets you get it for free.

So far as hospital care and medication etc that is covered under the NHS. It is paid for through our tax system.

nice topic ,and thank you

I sometimes feel guilty as a mom with a husband with HD and a boy 9 and girl 8. Kids at this age are normally very self centered (especially the girls) and here I am trying to teach them how to step around their Dad's preferences and going with the flow when they are developmentally expecting the world to evolve around them. It is a delicate balance that I cannot say I always keep in good balance. Little things like sibling rivalry doesn't fly very well in our house because daddy can't handle the stimulation.

That is such a tough situation. I think the most important thing is to be sure they know (and you are acknowledging) that these are daddy's problems/issues - I think the healthiest thing for them is to validate the reality rather than pretend that the situation is something it isn't. I heard of a study where children of psyhotic mothers were studied - some did well (in terms of mental health) some didn't do as well. The children that were better off were those whose dads acknowledged the mom's illness rather than tip toe around it/make exuses for it/pretend it wasn't there. I am not saying anyone here is doing that at all - just trying to stress how important I think it is to the kids mental health that we call it as it is. We are the keepers of their reality.. I struggle to make everyone happy as well... it is a difficult balance.

My dad survived the Holocaust between the ages of 10 and 15 - he lived through extremely difficult things at a young age and he was the most well adjusted guy you'd wanna meet.... and happy. kids are quite amazing that way...

Hope4 - your kids obviously have a mom that loves them a ton and understands them - what's more important than that?

Yes. We are very open and honest about dad's having HD and that his limitations are related to that. I'm always hoping that I'm presenting it as "this is the best way to avoid his triggers." We don't want a melt down to ruin the day. Even when dealing with healthy minds...I live by the mottos "choose your battles" amd "don't sweat the small stuff." How else can we survive.

Patty

Hello Piusvir!

I'm writing this as I'm about to give birth anyday now to our PGD baby girl. My husband tested positive last year and after that we decided to go on with IVF/PGD. I don't know what it will be like for my daughter to grow up with and HD affected parent (in my husband's case, he was an adult already when his mom started to show symptoms, so I have no idea how he would have turned out otherwise) and we did think about it a lot, but at a certain point, we just took a decision and now what's been done has been done. I do feel guilty but I also feel that once HD is in your life, every decision is hard because you're constantly comfronted with all sorts of dilemmas and win-win situations are no longer possible.

I think it's interesting what's been said about how children who have been told the truth and explained the situation usually do better. I do plan on approaching things that way. So, even though I know my daughter will probably suffer a lot, I also think having a parent who will always be there for her and who will be honest to her will mitigate some of that suffering. We've also made plans to get more family support. That means we had to make the hard decision to go back to our home country (we immigrated to Canada several years ago), so our child can count on her grandparents and uncles (I'm very lucky to have a very supportive family).

I think there is no perfect solution to all the dilemmas we're comfronted to once HD gets into your life. So, I just try to do my best with what's been thrown at us without torturing myself once I make a decision. I just plan in consequence, assume responsability for my decisions and try to do my best as I go.

Best of lucks if you decide to try with PGD!

Hope4 and Hope2,

That is exactly what we do, too. Our (almost 9 year old) twins know that a lot of their Daddy's outbursts or temper problems are HIS issues and not theirs. Of course, that doesn't give them a free pass to run over him and not respect him, but it does mean that when he loses his temper and starts to yell about something that is so trivial in life, I have taught them to just tune out and walk away. And AVOID THOSE TRIGGERS!!!

We also got them cell phones. My daughter especially loves that she feels like she can walk in her room and quietly text me if she is upset about something.

I've also noticed as the kids are maturing they are watching out for their daddy more. As things progress, I'm sure they will probably be a big help to him.

thank you all for these posts. Somedays you just need to read positive stuff.