Good evening,

I am new to this forum and looking for support. My mother was diagnosed with HD in February of 2012. It came as an extreme shock to say the least. Her mother had passed away early in life from cancer and had not known who her father was, so besides watching Olivia Wilde's character on House, I had no exposure to this disease.

Fast forward to now, my husband and I recently got married and have decided to start a family. I am having issues with this decision because I have chosen not to get tested at this time and we have decided to get CVS testing during week 10 of pregnancy and to terminate if HD positive. (this is not an abortion debate---we are comfortable with this choice and cannot afford the 15K price tag of selective IVF. Which is NOT to say we can't afford a child, so, please, no guilt trip)

I am wondering if there are any other individuals out there who have chosen this path and what challenges you have encountered and how you would suggest we proceed.

Children with HD,

There was no test when my wife and I married. Her mother was diagnosed with HD. We made the decision to not have babies and instead adopted.

Sound like you are dealing with an economic issue. Consider paying $600 to test. If you are negative have all the kids you want. If you are positive then start terminating pregnancies.

Good Luck.

I realize what a hard decision this must be for you and your husband. I agree with the last post-personally I think I would rather get tested myself first rather than finding out through a fetus that I was positive or possibly negative. Not judging you, just stating my opinion. My husband has HD and prior to knowing that, we tried for many years to get pregnant. Turned out I was infertile. I have 3 stepsons at risk and one grandchild at risk. So sorry you are dealing with this. Any decision you make will be difficult and I pray for peace with whatever decisions are made.

Wow! That's a load to carry on one's shoulder's. Unfortunately, HD is a load by itself. I am not going to have an opinion about what you are facing or what you may decide, but I want to share with you.

Two weeks ago my eldest son and his wife informed me I was going to have a grandchild. I was and am elated. This is the first. We have had many HD conversations in the past and they are well informed. I am the first to have HD (lucky me).....I posted here some time ago and of course got several opinions (which is why we are here).

My son and his wife were referred to a preliminary counseling session and low and behold they told them everything I had already shared. Much of what I had learned was from this forum and its members as well as Steve and Marsha. The counselor even called me to chat about specifics.

Long story short, they have decided not to test at this point until there are symptoms. Discontinuing the pregnancy is not an option for them and I respect that as well as your opinion.

I believe with all of the research and strides being made in genetics there may be a treatment in my lifetime and certainly in theirs. I also know the cag count is important in determining onset.

Take it one day at a time and you know your options and if you don't it is very easy to research.

I wish you and your family the best,

Mike

Please, Please, Please, get tested first, then adopt if you find you are HD positive and don't want to risk passing the disease to future generations.
If you are pregnant and fetus tests positive, you not only have to deal with terminating a precious human life, but you also have to deal withfinding out that you are HD positive as well. That is a tremendous amount of stress you are putting on yourself and your husband. This is not a guilt trip, it's serious concern over your mental well being. It was devastating for my husband and I when he was found HD positive and it took us a few years to get over the grief and anger. I can't imagine adding the trauma of an abortion on top of that. Get tested and allow yourself the time to come to terms with whatever the outcome is.

Have to say I agree with djcloc. I don't see how that would give you any peace for you to find out if you are positive 10 weeks into a pregnancy. Even adoption or a negative test doesn't guarantee that you will have a child without some kind of terminal illness. I am sorry you are in this position, and I will pray for some clarity and peace with whatever you decide.

Hey there everyone-

I think tabye sounds pretty firm in her decision, and is asking more about similar experiences than advice. Good for you Tabye. Nothing with HD is easy, but you need to chart the course with your life as best you can.

To that end- I am at risk and we chose to do IVF with PGD. We had fertility issues anyway, so insurance covered IVF and we paid for PGD.

That said, we did need to get CVS for a totally different reason at 11 weeks (which I think is the earliest you can do), and it was difficult waiting on the information. We got reassuring news, but I think I may have had a hard time terminating. The CVS procedure is not terribly fun, but you can get through it. Make sure to pick a doctor thats done lots and lots of them.

My thoughts are with you, and as Mikee says, the future seems very promising on disease modifying treatment, whatever your choice may be.

PM me if you want to chat one on one. You deserve lots of support and understanding at what I hope is a very happy time in your life.

Your right noreaster. They deserve a lot of support and I didn't me to sound judgy! Best of luck with everything! I have not been in their shoes and really can't even imagine it.

V

I do not agree with Cosmo to terminate your pregnancy if the fetus is positive. You have a live human being that you are
carrying and there are very promising treatments on the horizon. I pray one will cure very soon.
Enjoy your child and be the best parents you can be. God does not make junk.

Shar,

Did you not read this statement in the original post?

"I have chosen not to get tested at this time and we have decided to get CVS testing during week 10 of pregnancy and to terminate if HD positive. (this is not an abortion debate---we are comfortable with this choice and cannot afford the 15K price tag of selective IVF. Which is NOT to say we can't afford a child, so, please, no guilt trip)"

If you are anti-choice, please keep it to yourself. This is not the place.

Dear Concerned Partner -

I agree 100% that tabye has to be supported, and I myself do not have any problems with her choice whatsoever.

The thing about this board, is that people are coming at this from zillions of angles.

Shar is the partner and caregiver of a loving husband who has managed to care for his HD for an extended period of time, and views her marriage as very positive, and full of love. So my interpertation of what she is saying is that people with HD can have good, quality lives, with meaning and richness. But thats more because I am familiar with her position on lots of posts.

In my own situation, I may in fact make or have made the decision to terminate a pregnancy, but thinking of my family members with HD, I also remind myself of how meaningful their lives are.

I guess what Im trying to say here (to everyone!): this is complex, we are all working from different positions. The more compassionate we can be of others' points of views, the better off we all are.

Tabye, I am not sure you are fully informed about how this procedure is done. You wrote that you have chosen not to be tested at this time. I take that to mean that you do not want to know whether or not you have the HD gene. If you decide to abort only if the fetus has the HD gene, and you are told that that is the case, then you would then know that you too have the HD gene.

The way that this procedure is done with people who do not want to know their status is that the patient is advised to abort if the fetus has a gene from the affected grandparent regardless of whether it is the HD gene or the normal huntingtin's protein gene. That means that some of the abortions will be of fetuses without the disease gene. This is your decision, I just want to make sure you understand the procedure.

Hi we have decided to have a baby and do the cvs test but it is at 11wks and 2 days or near as they can to that date, we went to our GP and talked about having a child as we can,t adopt because my partner has symptons, we are a bit different from you as we no my partner has hd. Our Gp put is in touch with a gentic counserler who came to the house and explained all the different routes we could take and options available to us, I think this is what you need to do to get the facts in your head and which option is best for you. We are pregnant at the moment and get results from cvs test and end of week which is about 4 days from cvs so not to long to wait, we are comfortable with not carrying on with the pregnancy because we are strong in hd stops with my partner and not pass on the gene. We have only told my partners so we have no pressure from anybody it is our choice. Its very hard to know what to do but at this moment we didn,t fancy ivf route so gone for getting pregnant naturaly and have cvs hope this helps good luck

We found out we were expecting our youngest at the same time I was getting tested for HD. When I found out I was gene positive it was my husband who had me consider waiting to abort until we had the CVS. I am glad we waited as now I have a 1 for sure gene neg child. Just know that the CVS process is long...we literally got our results 48 hours before I could even attempt an abortion process...I had made the appointment already..just in case. Not sure what I would do today...that is my short story....I worry about you and this choice only because if you have a gene pos fetus that obviously makes you positive...which doses take some time to process...and no matter how pro choice we are I think an abortion would be a lot to process ad well...I assume you are a strong person by the choices you have made and have shared with us and I wish you the best!!

DCB
*Living for today*

You know, I have read this post a number of times and support is what you need. That's it.

So many people have differing opinions about everything from politics to potty training. You and your spouse are ultimately responsible for your actions.

I have found in my years that if you ask for an opinion you will get two. Those offering an opinion sometime feel if you ask you should take their opinion as fact. I'm certainly guilty with my children. With time, things will be more clear.

It's good you are thinking this through and with that you will obtain more knowledge.

Mike