As everyone has said... this is your decision. I can only speak as a parent of a child with JHD. My daughter passed away in July at age 12. Yes the disease sucks, yes she experienced things that no child should experience... Personally I can only tell you for me.. my view... in my situation and my thoughts after sharing her life.....Her life was extremely important, precious, and all days had smiles and laughter. Yes she did experience symptoms and yes she had pain, she lost the ability to walk, then talk, eat and had iv medications the last 2 years of her life. But she had happiness, she had life, and I do not wish she did not exist nor did she express lack of life would have been "better" then the symptoms she endured.

I wish you all the best (fyi her CAG count was 120)

Nice post Stacy

[www.hdyo.org]

She sounds like a real treasure Stacy

Beautiful post, Stacy. I've tears in my eyes, again.

Stacy,

Thank you so much for sharing your story with all of us.

Love,

Paula

Thank you for sharing, Stacy. Your daughter was so lucky to have you, and I can tell you cherished every moment with her.

Re: "full disclosure" results -- the doctors confirmed that I will know the CAG count of my baby when we get the results. My husband and I are still unsure what we're going to do. I appreciate everyone's posts, just playing the waiting game right now.

Thank you for posting, Stacy!

I "google" about HD and pregnancy at times and this thread came up and I almost feel like I am reading about me.
My husband is also 32 and was tested for HD. He is in the grey area. His father passed away this summer and his sister is gene positive.
He will only have kids if we don't pass this disease onto the next generation. We can end it if in our opinion we are smart and get tested.
So we are planning to go through IVF and go through PGD testing.
However, we recently had a minor accident and I could be pregnant. Probably not but a slim chance. It makes me think if I could really abort if the CVS test showed a positive result.

To answer all the back and forth. They do give you the actual number from the CVS test. I do understand to logic based on the number.
For example my husband is in the grey area and you might decide to gamble on not aborting and hoping that they will find a cure or medication to live with this disease by the time your child gets to the onset of HD.

This is so personal and do not think anyone should judge.

Personally, I think that we should get tested and not pass on HD. But that is my opinion.

But let me tell you marrying into this disease is very trying on me. I really didn't get this disease until time passed. It sucks!!!!!

Hi digging deep, you are so right when you say it takes a long time to "get" this disease. Im in the early stages, and it took me a long time to wrap it around my brain what i had, and what all it encompassed. I do wish you and brokenchair the best in what you're going through.
Brokenchair, i want to apoligize, in hindsight ive been a bit strong and pushy on this thread. I only thought cag was not disclosed, just positive or negative, just from what i read, but i must be wrong about that. I guess what did bother me, is that i understand that a person doesnt have prenatal testing, unless they have already made the decision ahead of time to abort if positive. It's not supposed to be decided after, for reasons already said. But, having said that, if i was having this done, i cant say that i would abort either. So the proper choice for me, would be, if i know i cant abort, the proper choice would be not to have the testing done then, but, would my anxiety and curiosity take over, and would i decide to have the test done, possibly just so i can know? The proper answer would be no, but i'm human too, and in all honesty, i don't know that i would do the proper thing either. So i really do wish you the best. I hope your baby comes out negative, and that you won't have to go through any hard decisions.

When you got to a genetic counselor, they support any decision you make.
1) get prego naturally and go with cvs test and abort if the baby tests gene positive or not. You decide.
2) go through IVF and PGD and only I implant the non affected embryos
3) after implanting then cvs to test just to make sure the baby is non affected

I have been told that the lab could make a mistake so people might want to double check and do cvs after PGD.

This process is scientific, in my opinion.
So I will do my best to stay emotionally unattached and treat it like a science experiment.

My first appointment with an IVF doctor is next month.

I really wish I didn't have to get pregnant like this but I couldn't give birth to a baby with this gene. I am too smart to do that.
This disease needs to end and I know of a way.

Barb -- No need to apologize, you said all of the things my husband and I have already thought of a million times over. He didn't think it was justifiable but even not knowing for the past month was driving me insane so I didn't think I could handle 18 yrs without knowing, and even then my child may decide not to test. I really do appreciate your opinions, so thank you!

digging.deep -- That is exactly what my husband and I initially planned before we got pregnant, but I guess we accidentally started early and after 10 pregnancy tests confirmed there was a baby in me, all of our logistical way about this was thrown out the window. You are making a wise decision for testing before getting attached like I did, just try not to open your eyes at your ultrasound because when you see that, AND hear a heartbeat, you will instantly be connected (at least that's how it was for me).

But, some sad news... our baby tested positive with 45 repeats. I guess in a way we were lucky to be able to do a CVS to find out at all. That's why I've been away... we decided to terminate. I have the appointment early next week. We've been in tears everyday, but we feel it's the responsible decision as parents. It's been really hard, but I think I'm coming to terms with it. The doctors might have to strap me down on the table but my husband and I know it's what we need to do. Maybe we'll try again in the future, but maybe we're just not meant to have children.

Thank you to everyone's involvement in this thread, it did help me a lot. I might be back with updates...

God bless.

Brokenchair, so very very sorry to hear you sad news. Know I'm thinking of you.. Pat

Broken.chair - I am thinking of you and support your decision very much. I realized this is not an easy time for you but hopefully in the holiday season you will be distracted and this time will pass by. Personally I think if you want a child then you should and you have options. Perhaps donor for sperm or PGD along with IVF.
If you want to talk/email let me know. I feel like I found a friend that is going through the same thing as me and only you can understand.
Happy Thanksgiving.

I'm sorry to hear the news! Can I ask how far along you are?

Brokenchair,

I'm so, so sorry. My thoughts are with you during this difficult time.

Bluegrass

my cag is 47,and we have middle age onset. there has never been a child with hd in the family, no one has made babies with someone else with hd

Brokenchair, I'm so very sorry.

Brokenchair, i'm so very very sorry, both for your baby's results, and what you are going through now. Hang in there hon



Edited 1 time(s). Last edit at 11/26/2011 10:07PM by Barb.

A CAG of 45 is not JHD and I suspect my husbands CAG is about the same. I am sorry you are going through this but if you were to talk to my husband I don't think that he would say he was never to be born.

He has had a full life and two children. He has contributed to society and blessed me with two children.

There could be a virtal cure by the time your baby is old enough.

I don't believe it is child abuse to bring an effected baby into this world. What is done is done and you have options.

I don't mean to make the decision more difficult, you did not make this baby knowing it would have HD. I don't believe having an at risk child is abuse. I hope and pray my at risk children are not effect but if they are my hopes and prayers are that they life a full life.

I'm so sorry for you and your husband, Brokenchair. No decision that you make about this will be anything less than heartbreaking.