My fiance and I decided to try for a baby about five months ago. He has HD but no active symptoms as of yet. I agreed that if I got pregnant I would test for HD and terminate the pregnancy if the test was positive. I am now so conflicted on this decision. I never expected to get pregnant so quickly being that I am 37. I am only five weeks along and I know alot can happen between now and when I will be tested but I already love the little life growing inside me. It just seems like there should be better treatment or even a cure 40+ years from now. I know juvenile HD is also a real scary thought though as well. Has anyone else been through this? I would love some thoughts on this.

I personally decided to do IVF with PGD testing and also did a CVS test at 12-13 weeks.

I understand your feeling. Perhaps don't look at the sono until after the cvs test results?

Find someone who does CVS tests often to do the test. It takes a week or two for results from the lab.

Good luck!!

You can get a lot of suggestions on your question. I don't feel that anyone can guide your moral compass other than you. Don't misunderstand me, I am remaining neutral.

If you look back you can see some of the same information I am going to share here but I will shorten it.

Bringing a new life into the world is not something most don't take lightly even without the HD gene being present. It is a time to be jousious and happy regardless.

My son and daughter in law had our first grandchild a year ago May 6. I informed them of the implications before and they went in somewhat prepared. In our conversations they told me that HD would not have changed their decision. Upon further genetic counseling, after they found out she was pregnant, my son shared that he didn't really understand how serious what I told him was. He felt that they would test next time.

As much as I could, I put the thoughts of HD affecting my grandson aside. It works well sometime and others it doesn't. He is a precious blessing to all of us and has a smile and wit that wins hearts. I know, he's only a year old, right.

I am with you about there being treatment in the future. None of us know when but it sounds like it is much closer.

I wish you all the luck and prayers that you can make the right decision.

Mike

Hi BrandiMom,
How are things? Have you had the CVS? I am booked in for CVS in 2 weeks time. I'm finding the wait very hard and also feeling very conflicted too. There is a big part of me that wants to cancel the CVS and just get on with our lives.
Hope things turned out well for you.

gabson - First of all lots of hugs to you! I know how stressful this time is for you. It was the hardest time in my life without question. I did my CVS test three weeks ago. The test itself was not bad at all. I stressed myself out about it. The worst part of it was needing to hold my bladder during the test. It was over in just a few minutes. The wait on the other hand almost killed me. We were told it would take four weeks to get our results back. Three days after the test I completely lost it. I was so upset, I didn't know what to do with myself. All I could do was cry. I called my OB clinic, luck for me they have a counselor on staff. I got in to see her the next day and she was amazing, gave me lots of tips to stay calm until results were in. The following Monday I got a call from our genetic counselor, I thought maybe we got our other chromosome testing back early. The first thing out of her mouth was "I have great news for you" then she went on to tell me our HD test was negative we were all clear. I have never been so relieved in my life and we only had to wait one week for results. A week later we got our chromosome tests back, we were all good on those too. It is such a relief knowing our baby will be HD free. I think the decision would have been to terminate the pregnancy with poor results, although honestly I am not at all sure I could have gone through with it. It is such a personal decision, there is nobody who can say what the right decision is. All I know is when I was looking for someone to talk to it was nearly impossible to find someone in the same situation. HD is so foreign to most people. I reached out on birth boards and got a lot of criticism. All I wanted was someone to talk to that understood what I was going through. If you need someone to talk to feel free to talk to me. I am not sure how the PM thing works on here but sure I can figure it out if you send me a message. Good luck to you in whatever it is you decide to do. Just remember it is your choice!

BrandiMom,

I am so happy for your good news!!!! I, as a mom, know what it's like to get the news that your child is negative and they cannot pass it on to their children. My husband is 3rd generation of HD, but our 22 yr old son was tested and he was negative. Praise the Lord for that but my heart also breaks for the people who do not get the same news.
Enjoy your pregnancy and your new baby to come.

Elizabeth

Wow!! That is such fabulous news.
And in only 1 week! What a relief and how wonderful you can now really enjoy your pregnancy and share the news with anyone and everyone, if you wish.
I've been told 14 days no less, no more for the results. It is one week to the day that I'll be having the test, and I already know it's going to be the slowest week of my life.
My husband is in the grey area with a count of 38. So we have decided to only find out if the count has expanded to 40 or more. So we are lucky that our decision isn't necessarily a 50/50 chance of terminating. We just aren't sure of the statistics of a grey area count expanding into the full penetrance range, it is this part that is giving us the most concern. We also have to take the fact that there is a family history of cag expansion from the grey area.
I am also a little bit concerned about the small miscarriage rate from this test. Was there anything you made sure you did/ didn't do after having the test?
I'm incredibly happy for you, thank you so much for your happy update.

I'm so sorry I have no idea why it took so long for this to make it to my email. Yes we are so relieved! It has been very fun to start telling people and most importantly tell our kids. Our family is very excited.

The gray area seems to be a real challenge to research. I spent a lot of time trying to find info on what our chances were to have a baby with repeats in the gray area. Really almost no information that I could find. The only information of use I could find was that CAG repeats were more likely to grow if the father was passing it down than rather than the mother. Not much help.

I would try not to worry to much about the risk of miscarriage from the CVS itself. Our office actually told us the possibility of a miscarriage is now closer to that of an amniocentesis or about one in 300. I was very worried myself till I heard that. Just make sure whoever is doing your test is very experienced. I was told that it makes all the difference in the world. My Dr. was very good at the test, only a minute or two and she was done and got a very good sample, that was why we got our results back so quick as well. I know I said it before but the test itself is really not all that bad. The wait on the other hand is agonizing. I recommend trying to find a counselor to help you through this time. That was the best piece of advice I received, it helped so much. As far as what to expect after, I suppose it is different for everyone. I had more bleeding than I expected so I took it very easy. I took two days off work and just camped out on the couch, then took it pretty easy the rest of the week. The bleeding stopped after about four days. I picked up something a bit heavy about a week later and I did have a small amount of bleeding again. I was told to rest and have pelvic rest for the next week. Everything cleared up after that. All I can say is take it easy on yourself and don't over do it. They told me to take 24 hours off and I took 48. I think I needed it and just the mental exhaustion alone caused me to need an extra day off work.

Good luck to you!

You are in my thoughts and prayers. I am sending lots of healthy baby vibes your way