Hi! I'm new to this forum so I apologize if there are similar posts to this one.

My husband and I are 25 years old and we'd like to start a family soon. My husband's mother has HD (CAG 38) but we haven't had my husband tested yet. His mother is 55 years old and started noticing the symptoms (jerking mostly) after a tramautic accident about 20 years ago.

My husband tends to close down when I bring up the topic of HD - I think mostly because of denial. However, he does want to have children soon. We've had genetic counseling so we are both aware of our choices. We live in the Minneapolis/St. Paul area.

I would like to hear some advice/comments/suggestions/opinions on whether my husband should be tested for HD before having children or if we should just continue with our lives. Has anyone had to deal with this kind of decision? It may seem obvious that he should get tested but its also a huge decision for my husband to make.

I appreciate some advice!

Thanks,
Julia

What do you want him to do Julia?

Hi Julia, I can understand your concerns, but it's a question that only you and your husband can answer. I for one would not have the temerity to advise on whether your husband should test or not.

The HD community is split on this question, some for testing some against. I fall on the against side, I have the view that one should live life and cross that bridge if and when it arises, but I know others disagree with my view..take it easy...peter.

Julia, Welcome to the forum. You have tons on your plate. My advice would be for you both to read this forum complete. I know it is a lot of work, but here you will be able to see what the HD world is dealing with present day and what you will be looking forward to should the worst happen. All scenarios regarding HD are noted here. The experts here provide excellent advice and support.

You and I are on the same side of the fence, our significant others have, or have had in the past, HD in their families. The two of you need to discuss HD and be honest with each other. To test or not to test. . . That is the question. I can only suggest that the two of you gather as much information as you can regarding HD and make the best educated decision possible. It?s different for everyone.

To be in denial I think is only natural. I have been in denial off & on throughout the past 20 years, but as you see a family member suffer with this horrible disease, you have no choice but to face it.

When Laura and I were just starting out (about the same age as you & husband) we were faced with the same decisions you are facing. That was in the early 90?s and information, treatment, education, etc. has really evolved. At that time Laura?s mom was showing very early symptoms. Laura & I decided to move forward and start a family. Laura tested positive about 6 years ago even though she already knew she had HD due to some subtle symptoms. We have two beautiful kids, 16 & 18 who, of course, are at risk. Laura has HD. It sucks.

Pete

In this day and age, unless you have religious opposition, children can easily be planned for to not have HD. The parent doesn't have to test. It's expensive .. around $15,000 but if you can spend that much or more on a car you can on your future child's health too. I personally have two children at risk... and it takes a lot of the fun out of being a parent..and worries them very much too. They grew up with their mother very symptomatic and violent, and now are watching her at a NH in the last stage, as they did their grandmother who has died from HD. And aunts and uncles. Saying you will "just live life" would require remaining quite ignorant of HD. I have found most find that pretty difficult to do. If he has the gene, you will be a caregiver for a long long time. Everything in life is affected by that. And remember, you may have to watch HD with your husband and then again with a child if you at least don't prevent it with implantation. He doesn't ever have to know his own status that way..only that the embryo is HD negative.

Hi! My husband and I are in the same situation as you are. We've recently find out his mother has HD and we want to have kids very soon (I'm 30 already). We had decided to test as soon as possible but then insurance stuff got us stuck, so we've decided to wait until that's resolved (he had even had his blood drawned, but then we asked them to destroy everything and start all over again when everything is settled). Anyway, our decition is still to test and to have kids throught IVF/PGD.

I agree with everybody here that is an extremelly personal choice you and your husband must make. I don't have a formed opinion about whether a person should test or not because we never had the option of not knowing the results (we know already he'll test + because his mother has 2 copies of the HD gene). But testing became important for 2 reasons:

- one copie is not the same as the other; so, any piece of information we can get to better prepare ourselves for what's to come, we want to have it. I personnally think knowing is empowering. Knowing will give us idea of how we should plan our lives. And my husband really thinks it won't change a thing for him. Everything that could have changed, has already changed. The moment you know you're at risk, everything changes anyway...

- kids: here in Canada, at least where I live and where I prefere doing it, they don't do PGD unless the parent has tested (they used to do it, but not anymore).

Now, about the kids issue, not having kids at all, PGD or adopting are better options for me than just having a kid with a 50% risk of having the HD gene. You might think that you'll be able to live with it, but I don't think you can predict that for sure. I know I could not, not knowing that I could have avoided it in the first place. Not even if I really believe we will have good treatments some years from now. I already have a hard time imagining how I'm going to manage to take care of my husband and take care of a HD- child but who will be exposed to this horrible disease; so having a child at risk would simply be too much.

Anyway, I thought you would like to know there are others who are in a similar situation and how they're dealing with it. I really think you should have a long conversation with your husband. Talking can be painful (for my husband, it was), but we came out a lot stronger after we figured out together what we thought was really the best for both of us.

Take care,

Luz.

My husband has tested positive for HD. I agree with Eric. No matter what you think, it is not something you can ignore forever if your husband has it. He decided to test soley because we wanted children. When we found out he had it, children were off the table...until we discovered IVF with PGD. I, like Luz, live in Canada where they will not allow you to do PGD unless you know the results of your HD results. I had to be tested as well. That is the route we have gone and I am not pregnant with twin boys due in January 2010.

Another route for you could be prenatal testing (if you would be able to abort the child if they had HD, otherwise, there would be no point in testing at all).

You should read the the recent post by Zandra titled "Predictive testing for minor child". It may possibly help you in making your decision. Once the child is born, your right to know the HD status is totally off the table.

Good luck with your decision!

The decision to have kids based on hd status is not the complete decision. Having a HD free is fantastic no matter how it is done, but the more important decision is the worst case scenerio. Can you raise your hd free children with your husband if he is symptomatic? Can you imagine having three children, and a spouse that offers no help because of limitations? Financially is it possible? If your spouse becomes symptomatic do you have a support system that will help you manage your house, your kids, your caregiving?

There are plenty of caregivers and children of Phd stories on these boards. YOu will get a good feel for life as a caregiver and the life of children in a home with a Phd. Then you will be able to make and educated decision.

I can't say I made the wrong decision, I love my children. They give my life purpose, and they have made me a better person. The life I am living now is not the life I expected when I made the decision to have kids. Have HD free kids is great but no what you are getting into.

Hi Julia
As a mother of two children I will say the thought of having inadvertently passed on the HD gene to them (didn't know HD was in the family until after they were born) is the hardest thing about coping with my gene positive status. If you can afford it, IVF with PGD is something to seriously consider. Good luck!

Dear Julia

How I wish now that I have done the prenatal test!!! When I could do it, I was so overwhelmed with joy being pregnant eventually after years, that I just wanted my baby!!!!! But you being young, my advice would be to have the test and the abortion should the fetus have the gene. I am a very religious person and would for no other reason promote abortion, but believe that God has given us brains to make some difficult decisions ourselves, why else would the test be possible? I know a couple who has done it (one abortion and thereafter a healhty boy, now aged 12) and they just never looked back!! (just for interest sake, the husband had the hd and is originally from the UK. His aunt got a recommendation from the Queen on the work she has done for HD in the UK, so their decision was made having "expert" knowledge at hand)

I would however not know how to advise you should you have difficulty falling pregnant and might not have a second chance to have a baby.

You are in my prayers.
Kindest Regards
Zandra

Thanks for all your comments and ideas!

At this point, I think I want him to get tested. I don't think I'd be able to live comfortably knowing I could be putting my children at risk, when I could prevent it to begin with. In addition, I also want to know if my husband has it so we can plan accordingly down the road. Obviously, it'll take a lot of resources to care for him if he does test positive and knowing about that now would help tremendously. And, if we're lucky, he'd test negative and we won't have to worry at all.

I'm going to read around this forum and website a bunch more to learn about other people's experiences. Then I plan to talk seriously with my husband and tell him what I've learned and my apprehentions. It'll be a big struggle for us but we can work through it. Please wish me luck!

Julia

Hi Julia,

I was tested before having kids, and my test came back positive. CAG 42, family history of late onset. Because of IVF/PGD, I now have healthy HD Free twin girls (who just turned three.. my how time flies!)

If you are interested in learning more, please visit my website. It talks very candidly about my experience.

www.HDFreeWithPGD.com

I am also available to answer any questions you have. Feel free to email me at stacybrook@aol.com

Best of luck to you!!
Stacy

Sounds like an excellent plan, Julia!

jl



Edited 2 time(s). Last edit at 10/28/2009 01:37AM by jl.

Julia, since you asked, encourage your husband to put his fears and/or selfishness aside and test. Otherwise, you will be aprehensive for the remainder of your lives. Fear should not dictate a lifetime of planning.
25 is so young - still at the invincible age; most of my grandchildren are older. Your husband should not put you in this position.

One either knowingly or ignorantly brings children into an HD family.
You have the opportunity to determine which. You also have the option to ensure the child is HD-free.
Bob

I quite frankly do not advise having children without the at-risk parent having been tested.

It's a simple test. And it can solve so many questions as to what one needs to fear.

Why not test? You can then plan, as one needs to.....

jl

Dear Julia

Best of luck to you and your Hubby! Just remember, although you are reading everybody's input and learn more about HD and other peoples perspectives, your Hubby also has to come to terms with it all. He most probably already realize that he might have it but it would need your assistance and understanding to gradually and lovingly let him accept your request to have him tested. If he decides not to have himself tested but agrees to have the fetus tested, try and accept that as a gesture from his side that he is willing and open on the "topic" but not 100% ready yet.

AAAHHH dear, just my thoughts ok!?!?!?

Kindest Regards and ALL OF THE BEST baby!
Zandra

I was in your situation when I was 24, my at-risk husband and I were considering starting a family at 30. His family has early onset and we figured by then if he showed no symptoms we could start a family without him actually having the test. Then I got pregnant after missing only a week of pills. We did not opt to have the baby tested in utero and now have a 2 1/2 year old beautiful girl. Almost a year ago we decided to have a second, he still wasn't showing symptoms and by then he was over 26. We again chose not to test the fetus. When I was a little over 7 months along I had a nervous breakdown, convinced that my husband was in the beginning stages, I lost 10 lbs and nearly lost my mind. Our son is now 10 weeks old. I am no longer convinced my husband is showing symptoms and hopeful that it was just the awful pregnancy hormones. However, I don't advise anyone to do what I did. What should have been the happiest time of my life turned into an awful time. My husband is still choosing to not be tested and we are simply going to wait it out. In a way I feel it is a blessing that his family has early onset because we at least won't have to wait very long.

Dear Julia,
You are getting some great insight and advice. I was lucky enough to not know my status until I had my grandchildren already. never had to make that difficult decision.I would give up anything to have my kids test negative, but I would never give up my kids.so I will live with the hope that they are negative.Let us know how you make out, ok?
Linda

Quite so! Plan for the worst - hope for the best......

jl