HI. I was hoping someone might be able to help me.

My husband and I are pregnant. He has the HD gene. We will be getting CVS testing in a few weeks. We were told that the earliest we could get the results back is 3-4 weeks. With the testing at 10 weeks, that puts us at 13-14 weeks when we might have to consider terminating. I find it hard to believe that the labs cannot get the testing done faster, since with PGD you get results in 2 days. But I can't find any resources to help me. I tried contacting one of the Centers for Excellence, but no response.

Has anyone been in this situation? Did it take 3-4 weeks for your results? Can you recommend anyone I can contact (hospitals, labs) that might help?

-J

I was in the exact situation about 5 yrs ago--I got my results back about the time I found out I was pregnant-unexpectantly--we did the cvs route {I have my story on the Testing for HD link--/"my own personal roller coaster ride from H...}. it did take up to 4-5 weeks for the result-I had the clinic # programed on all my phnes, so when I got the news, knwing time would be of the essense, they were to be the nxt phone call. I do know wht you are going through, and wish it could be easier, but you do need to make what ever decision prior to the results. It is up to you if you terminate or not, but once the results come back there isnt alot of time to give it real thought.

My best advice to you is: use the weeks wisely consider your options, but above all, have your decision made prior to hearing the news.

I will be thinking of you and your husband during this time, probalby more than you could believe--and i pray your results come back NEG. Please know there is someone here who has been in your shoes and knows that is a situation that sucks in every way.

Deb

Jens, i'm so sorry for what you are going through right now. I can't imagine the torment you must be going through. You've come to a good place, welcome to the hdac. I wish i had some advice, but i don't. Please let us know how things go, and will be thinking of you.

With the PGD, that's part of the service you get.

3-4 weeks is pretty fast for regular service.

I read Deb's story and what a roller coaster ride indeed. I am glad the results were good.
I feel for you as you have a very difficult decision to make and live with. Give yourself plenty of time to explore all options to make sure you do what you feel best about and can live with.
I have struggled with adding this to the post but please consider the other side. You are now carrying a little girl or little boy whose life is in your hands. The gift of life is very precious.
There may be a cure down the road as there is alot of progress being made right now and there are now some medications that help with this illness.
My husband has HD and my children are at risk. I didn't know much at all about the illness when I was pregnant with my children so I can't say I have been in your situation and I do not condemn or judge others
who are.
My children are grown adults and they have told me they have had a good life and are glad they are here. I can't imagine life without them. They are wonderful human beings and our greatest joy. My husband has also said he is glad he was born even though he now has HD. Yes, it tears ME apart knowing they have to think about this illness and I pray every night for a cure which I know will eventually come.
Not everyone born is perfect - there are other illnesses and abnormalities a baby can be born with or a baby can be born healthy and things change early in their lives when a disease or terminal illness strikes. None of us wish for that for anyone, much less a baby or child.
I am just saying look at all avenues and make the best decision possible based on all the information you have.
I know it is an extremely important and tough decision and I will pray for you. I am sorry this is a decision you have to make.
Take care of yourself and God Bless.

Thank you all for your support.

Actually, when my husband and I first decided to try to start a family, we agreed that we would only pursue options that would result in children without HD. We have tried PGD several times with no luck, and were told we were "infertile". We actually still have one embryo frozen that we were supposed to try this month. But we accidentally got pregnant on our own.

Of course, if the CVS testing shows a high repeat number that would likely mean juvenile onset I would agree to terminate. But if the number is low, I have a hard time considering a termination for a disorder that would not emerge for 40 or more years. Especially since it would be 14 weeks. I'm pro choice in general, but I am pro life for myself and I think it would be hard.

My husband's number is low (41) and he is not symptomatic. But he truly feels that just being positive has been a huge burden on him that he would not wish on our child. I feel that I'm glad he is alive, HD positive or not.

Needless to say, this is a huge strain on each of us and our marriage. And it's hard to think straight when you're pregnant! But we're trying to hash it all out before we get the results - I'm sure it will be even harder to think straight then.

Thanks for you responses, and I would love to hear more.

-J

Of course, if the CVS testing shows a high repeat number that would likely mean juvenile onset I would agree to terminate. But if the number is low, I have a hard time considering a termination for a disorder that would not emerge for 40 or more years.

Some may disagree, but I totally agree with your way of thinking.
Of course HD can come on any time, up to any age...who knows what age it could develop regardless of the cag count. But, it is generally thought that a high cag count is likely to result in jHD rather than HD.

Though a cag count doesn't really prove age of onset, but if it is thought to have an adult onset cag count, then I would go ahead, have & enjoy your baby.
Like you say, if it is 40 years or more, most of us, if not all here, believe there will be a cure or huge improvements in that time.
There's no guarantee there will be, but the only way to ever wipe out HD without a cure is for no-one at risk or + to have children & we know that isn't going to happen!
I say, see what the cag count is & if its low...take your chance & enjoy!

I wish you lots of luck & will be thinking of you.

Myrna



Edited 2 time(s). Last edit at 11/19/2007 06:48AM by miznjoe.

If your child to be has a lower cag count you have to remember that there is a very good chance that sometime in your childs life there will be very good treatment or even a cure found. There has been so much good already.

I wish you luck in your journey and will pray for a negative result.

Stacy-NJ