As you may have read.... My husband and I are starting the process for IVF with PGD.

I was wondering if anyone knows if you can test the cord blood from birth for HD?
I know you can for genetic diseases but not sure if you can for HD.
Per the laws you can't test a non systematic person until age 18.
I know we will be 90 % sure that the baby will be HD gene free but I really want to be 100% sure.
I would prefer not to do cvs or amino but.....??

Has anyone done PGD and then did testing to confirm the baby was HD free?

I appreciate your responses as I need to get some other perspectives on this.

Thanks!!

If you REALLY want to be sure, consider testing via CVS, since its early enough where you can make a decision. Testing via CVS does happen for Huntington's.

I think the cord blood would be overruled, since after the baby's birth you violate their right to remain untested.

My PGD people gave a 99% hd-free figure, and the 1% was human error in transferring embryos.

we can PM if you like, we just went through this process.

Yes please PM me. Not sure how to do that.
My place says 90%.
Thanks for responding.

We were given the option to test by amnio but we didn't want to risk the pregnancy. Then after my babies were born, the pediatrician said she would have them tested if I wanted. But after much thought we agreed that it would do more harm than good if they came back HD+. (After they're born - if they tested HD+ would you treat them differently? How would you eventually tell them? etc...)

We were also given a 99% success rate, and I figure that's so much better than the 50% chance they'd have if I didn't do PGD. I plan on educating my kids about HD as they grow up (since they'll be watching their grandma go through it), and when they're 18 they can make the decision to test or not.

These are all tough decisions. Best of luck on deciding what's best for your family.
Stacy

Stacy,
I was told that you can't test until they are 18.
We are told that they are 90% sure when doing PGD.
I feel like I want to know for sure that my kids will be hd free but not happy with the testing options.
The PGD lab recommends that you do test.
Decisions, decisions.
I still have time as we didn't start our cycle just yet.

If you want to be 100% sure you do not have an pHD baby, than you can't have to not have biological babies. There is always going to a chance for human error. Nor can you adopt because you could adopt a baby with the HD gene unknowingly.

To test anyone without there permission regardless of age crosses many boundaries.

Whenever anyone talks about bringing HD free kids into a family with an positive and/or symptomatic HD parent I have to wonder if they really understand that children can suffer just from being raised by an HD parent. An HD household is not perfection, it is not a life anyone strives for. I assume that most parents who consider this do not seriously symptomatic HD spouses. So they don't really know what HD is going to be like. What if the pHD parent becomes psychotic? angry? disruptive and realitively unsafe to be around children? You will be ok dissecting the family at a later date? Or have the kids suffer? Neither situation is ideal.

I understand wanting an HD free baby, I wish I didn't have to worry about my kids health and status. That is just one worry. The concern for now is how do I get these kids through there childhood with an actively symptomatic dad while giving them all the normal things normal families enjoy. It is a tough job to balance his needs, there needs and my abilities.

I don't understand going through such great lengths to have an HD free baby to have them grow up in an HD life. An HD life that can be unpredictable, complicated and sometimes violent. Having a pHD family is not just about having a HD free child. If you want 100% guarnetee that your child will not be effected by HD why bring them into an unstable situation?

Digging.deep, try to take the above post with a grain of salt. There were some truths in what was said, but also some bitterness. MRO left the forum last summer. Sometimes hd can wear on people for so long, that once kind people have trouble seeing the positive in anything, and for good reason, because they have been through so much. But that was rather bull-headed and strong, and you were treated a bit unkindly. You are the first person that has been treated this way since last summer. This forum had become a safe place again, and i hope it stays this way, in my opinion. You need to be commended for all you're trying to do to have an hd free baby. You are doing more than many do, and you're going to great lengths to try and do this, and trying to get all your facts straight. Yes, your children could have a difficult hd family life, but you just want to do your best to stop hd, the disease, in it's tracks, for your children, and their children. I hope the invitro works out well



Edited 2 time(s). Last edit at 05/07/2012 06:50AM by Marsha.

I replied to this post because I have an informed opinion, not to argue with other posters.

You are lucky to be able to have a baby in this age when you can get a nine out of ten guarantee that it is HD free. If I could have done that I would have. 90% is not enough for this potional mom, she wants 100% only way I see that happening is if no baby is created. The is the cold hard truth.

I love my children, who are at risk. Had someone pointed out to me when I chose to have them that I was bringing them into a 100% chance of having a socially disfunctional, emotional disfunctional and physically disfunctional family life I might have made a different decision. That is another cold hard truth, at some point in that babies life it will be effected by its parents HD.

People like me make these decisions all the time, while a spouse is healthy and many like myself ignorant to what real life is like. I still love and take care of my husband. I love and cherish my children. This is not the life I wanted for my children when I envisioned my life. It is not the life my husband envisioned for his kids either.

If you want the best for your child why bring them into a potentionally socially-emotionally-physically disfunctional family? That risk is not too big?

Has my opinion has changed as I have lived this life. YES. It is now one based in the realities of this life, before I had no clue. My advice to my children if they turn out to be positive is don't have babies. It is the best way to be the best possible mother you can be. Thousands of people make that decision all the time and still have full lives. I believe one of the Wexler's made that decision.

This is posted without anyone else's opinion attached. It is mine and mine alone. It is something that should be said and I am sure I am not the only person who holds this opinion. Not everyone has to agree.

Digging.deep- have you thought about egg donation if you can't get the percentages you want for a hd free child? I thought about egg donation from a close friend before getting tested. It's just another option. But if you can get 99% sure that your child won't develop hd, that would be wonderful. Congrats on getting ready to start a family!

When I first read the post, I was upset and decided to not answer. Now checking back I see more responses.

It would be nice if people read about my story before responding.

I am not the potential carrier therefore egg donation is not an option.

My husband has a CAG of 39 so he has lower risk and potentially not going to get HD. Time will tell.

I watched my father in law in his last years and he has since passed from this horrible disease.

I believe life is not perfect....HD or not.

My mother was one of five and her mother died when she was the age of 35. That wasn't ideal but that is what happened.

I am not saying I want my kids to be in an HD free world or environment. Although that would be ideal.

What I want is to be able to tell my kids is they are 100% HD free of the gene. And not 90%. Especially when they learn about HD and that is what their grandfather passed from.

We are going to great lengths to be able to end this disease in our portion of the family tree. I realize there are other dieseases that could come up instead. But knowing about HD and passing it one in my opinion is not the smartest move.

I had this thread to get information about testing and not to be told to not have a child.

It would have been best to not reply then to tell someone who is going thought IVF with PGD to not become a mother.
Not the kind of support and information that will be useful to me.

I responded to this post because you said you wanted to 100%, that is not reasonable.

I added my 2 cents about having children because you are not the only one in this world who feels this is a great thing. I am not arguing that having an HD free baby in not a great thing. I am explaining that it is only one piece of the puzzle.

Perhaps you need to know my story, which as HD goes is pretty tame. My husband and I went thru IVF years ago because we couldn't get pregnant and after several natural miscarriages. I wanted a baby and wasn't worried about HD. My hubby was not symtomatic, we were financially stable and had insurances in place. At that time PGD was not an option.

I didn't worry that going thru IVF in itself is stressful, or that pregnancy was stressful or that having a newborn was stressful. Stress triggers symptoms.

My once docile husband was changing, I chalked it up to stress of owning a business and babies.



Don't find my story or my opinion as useful or supportive. You are free to make the same mistakes as me and I am sure your situation will be different because you have a CAG count to count on and probably a way better support and financial system to rely on. Your story will turn out better. I am just one of the unlucky ones.

I don't know a thing cause according to Barb I am bitter. I am not bitter, I am experienced and when I planned to have my children I was under the illussion that love was enough, that his onset would be late like his dads and he loved me so much it would be ok.

I love my children and do everything I can to make there life 'normal' it is exhausting and worth it but when I think about it I was unfair to them by bringing them into this situation regardless of there HD status.



Edited 1 time(s). Last edit at 05/13/2012 09:41PM by MRO.

I haven't been here for a while but this has always been a place to share experiences and not pick or choose what is said or why. Someone shared an experiance, be it good or bad and quite frankly more people have had unpleasant experiances than postive ones that are HD related. Anyone can reject a shared experiance as not useful, but there is no need to critisize someone for having a bad one and sharing it.

You have a fair statement that I don't have to listen to bad advice. This issue for me is that the comments were not on topic.
I didn't ask....should I have kids? Or how can I have kids and make sure it is free of HD.

I was asking for personal experience on testing which both Stacy and Noreaster commented on.
I wish that the responses stayed on topic.

Thank you so much for making my head spin even more than it already does.

I hope your therapy session of listing out everything in your life helped you as it sure as heck didn't help me.

Or wait maybe it did. My husband has been up front about HD from the very beginning and we went to testing together prior to being engaged. I can't say I exactly know what my life will be like as HD is not predictable but I am putting my best foot forward and at times I need to dig deep to stay positive. And I am staying positive today

I wish you and your kids all the best. Happy Mother's Day!

Since the original poster isn't happy and Barb wants to leave over this, I guess I had better weigh in. Bear with me, because it's going to take me awhile to think aloud.

This has always been a place where people speak frankly. And as such, it is not for everyone. I'm on a caregiver's email list and I remember a time when, by chance, several family members were all posting about their end of life experiences with their loved ones who had very little time left. It was just too much for some people who were new to HD and they left the list. I think that was okay. People losing their loved ones have a right to talk about it and get support and people have a right to leave if they are not ready to engage in those discussions. So I don't consider the frankness here to be a problem it meets the needs of some and since there are other forums and lists where people can go to get the kind of support that it best for them at the time.

I hope there's a balance between openly acknowledging that HD is a bad disease that n one wants to get and becoming aware of the many different symptoms that can occur and also focusing on living a good quality of life, being proactive with health and advocacy and clinical trial participation. In short, I do have a lot of hope for the future and I want this forum to reflect that. Treatments aren't coming as fast as we'd like, but I believe they are coming. I also think that the management of this illness, while we wait for disease modifying treatments, has gotten much better with new medications for symptoms.

We need happy times and we do have them. When someone posts about a new baby being born then I believe the only appropriate response is congratulations. When someone at risk or gene positives posts about getting married, the only appropriate response is congratulations. Let's rejoice with them

When people ask for our opinions about having children or marrying someone with the gene or whatever, I know it causes hurt feelings when people are frank about the downside of these things based on their own experiences. I am okay with that, although I feel bad about it, because I think people should make well informed decisions. I have often said that when you choose a course of action you must choose to accept all possible outcomes. And I have heard people say all too often that they had no idea about certain things when they made a decision. To this day, some people have not heard about juvenile HD for example, but they should be aware of that possibility if they have at risk children.

Now what if there are posts where our opinions about what the poster plans to do are NOT sought which is the case here? Should we refrain from commenting? I think that if a post prompts us to want to talk about our experiences then it would be a good idea to start a new thread and do it there.

There is one exception to that plan though and that is if we see a safety issue that the poster just isn't seeing. For example, if someone is posting wanting suggestions for medication changes because someone is being violent, then I think we should address the immediate threat to safety for the caregiver and any children involved even though the question is about suggestions for medication. That's not the case here.

So to sum up, I support frankness (although tact is always good), but I don't think we need to rain on anyone's parade in a thread about a decision someone has already made unless there are safety concerns showing up in the post. We don't want to censor anyone or make anyone feel that they cannot talk about their experiences though so start a new thread to discuss the issue that a post like this prompts you to think about.

i would also like to point out that not all experiences with HD go down the same way!

my pHD parent, who has a higher CAG than digging's hubs, did have a bit of a temper. but not much worse than some of my friends parents. and believe me, i tested that temper. my pHD symptomatic brother was never a rebel, and always a lamb.

my dad certainly was always very on-point with decision making and NEVER delusional. as an parent of an adult (im now 37) he is MORE RELAXED, happier, and more reasonable than he was when i was a teen! so you can never really anticipate every risk or every outcome.

there are many diseases that also cause terrible judgement and temper, (substance abuse, bipolar disorders, plain old psychosis, etc) which i wouldn't want to wish on anyone. there are also crazy turns of events that happen for good and bad in each of our lives. we can make some educated guesses, but we cant predict or dictate the future.

the point being: i truly emphasize with someone's desires to rewrite a difficult past. that's totally natural. but please, let us encourage those of us with long futures ahead to be bold and not lose the dream of happiness.

mro - your situation is so heartbreaking. we each need courage and support to change a given situation once it turns irredeemable. i hope there is room in your life for love and happiness.

digging - kudos to you for considering everything before your leap forward. have faith in yourself that you are capable enough to create the happiness you deserve, even if it doesnt look how you thought it should.

Diggingdeep: Congrats on your decision to have a baby. Also, congratulations to your husband for being upfront about his disease. You are very lucky to be able to make an informed decision. 90% is great, fantastic and I think you should absolutely do it. Remember that 50% is not bad odds either. If you read any of my posts, you will know what I am experiencing. There are many things I wish I had known at the time I got pregnant. For instance, that my baby daddy was HD positive and had the test results to prove it. I wish he had told me but if I am being honest...let me say that at the time I got pregnant, I believed in abortion. If I had known at that early stage of my pregnancy that I would have a possibly HD positive child, I probably would have gotten an abortion. Since having my child...well, I don't really believe in abortion so much anymore. Fine for other people, not for me. My boy is such a blessing, a joy, my angel. I have never known what it is like to love someone this much. I come from a close family and he gives us all joy everyday. I wish I didn't live with the dark cloud of HD over our heads. Hopefully, if Jack had this disease, by the time he becomes old enough to test, there will be something that will give him a normal life span. If not, then I am so glad that I got to meet him and hold him and love him, no matter how long or short our time together is.

You are doing the right thing by learning as much as you can. Keep doing that.

Marsha,

Well thought out, as usual.

Thanks.

The original post mentions that the posters goal is to have 100% HD free baby. There is only one possible way can any argue that human error is not a factor?

Noreast brings up cord blood testing, I assume after the baby is born. That is ok? No one should question that? That doesn't become part of the conversation?

I am glad the poster can go thru such great lengths to have an HD free baby. But in my experience I wonder if that is enough.
I took that to the next level to wonder if anyone considers they are bringing this 'perfectly' healthy baby into a 100% chance of HD life. Not sure that is too off subject, a sidebar maybe. Maybe at worst fault me for derailing a topic. Does that mean what I have to say is meaningless or should not be brought into the conversation?

Digging didn't ask about egg donation either, yet it was advised to be a possibility. Is that a derailment?

At no time did I belittle the poster or make anything personal.

I guess support is only way to go, great for you and forget anyone who might make you think about what you are doing. I was then slandered by someone who was once considered a friend ? Very encouraging and supportive.

The point of this board is to share experiences? Or congratulate people and give cyber hugs?

Thank you!!!

Marsha,

A very well thought out response.

At the same time, either people are free to share their experiences and opinions or not.

I, personally, do not have a problem with MRO's comments. I found them to be honest and I'm sure they will be helpful and appreciated by the many people who will read it but may not post.

I think it's important to have as much information as possible...that's why people come here.

Some you will agree with and some you will not.

Maybe it's best to read things for what they are: someone's experiences and not take comments so personally. It's hard to do...for me too. But honestly, most people are just trying to hand in there the best we can.

I appreicate hearing about everyone's experiences and I like to see a wide variety of opinions as I think it offers a lot more information to all those searching.

So thanks everyone!