Hi all-

I'm not that frequent of a poster but thought I'd share our experience with IVF + PGD (In-vitro Fertilization with Preimplantation Genetic Diagnosis). To give you a brief background, my mother passed away last year of HD and I have 2 siblings, one who tested positive and one who tested negative. I am a 33 year old male and have made the decision (at least for the time being) to not get tested. My wife and I thought long and hard and decided that if I was a carrier, the buck was going to stop with me.

We actually started the process in January of this year but wanted/needed to get my life and LTD insurance in place before we proceeded. We live in the Bay Area and decided to go with UCSF for procedure. If anyone who knows anyone who's gone through IVF, everything is almost exactly the same. The only difference is that you work with outside lab for the PGD part (everything is coordinated via the UCSF genetic counselor). Also, because we're doing non-disclosure (i.e. don't want to know the test results) there are certain things that you're kept in the dark about. For example, we don't know how many eggs were retrieved, how many were fertilized, or how many were deemed as "good to transfer".

We started the cycle about 2 1/2 months ago and after many doctor visits, and even more injections, we are now 7 1/2 weeks pregnant!! It's still early but at this point, my wife is going through a "normal" pregnancy and we're keeping our fingers crossed on getting through the first trimester.

Making the decision to do IVF+PGD is not an easy one...both morally and financially. While each person needs to come to their own conclusion, I can't stress how wonderful it is to know that we're bringing a child into the world that we know is HD-free.

I could go on for pages and pages about the details so if anyone has any questions, please free to ask.

Well done.I have a daughter with JHD and it is great to hear some people who are at risk do this to stop the HD gene continuing.Congratulations xx

Congratulations! That's wonderful!
My husband and I are about to start the treatment... as a matter of fact, I have an appointement today to know exactly when we will start (PGD lab just finished preparing the test). In our case, we do know he carries the gene.
I'm really scared about everything at this point. It's funny because at the fertility center they make it sound like it's not that hard and that we will probably succeed at once... the couples leaving the building crying kinda contradict that fact. So, I'm very cautious and try not to build my hopes high.

I don't know if you thought of it this way or not. You brought up the cost... but people will happily drop $20,000 on a new car but complain about it for a healthy child. You obviously are finding the cost small for what you got. The "cheap" version of a child in this case can be very costly. I would happily pay $20k per child of mine to not have HD now. Seems like nothing to me now.

Luz, good luck to you guys! The thing to keep in mind that most people are doing IVF due to fertility problems/issues. I felt the exact same way...thinking to myself "Man, they're being awfully calm about everything like it's a given!" We only had one egg implanted which furthered my skepticism. However the doctors at UCSF assured us they would put in as many eggs as they thought were needed to produce ONE healthy baby. So far, looks like they were right.

Eric, that's a very, very good way to think about it. You can even take it a step further and say you're not only spending $20,000 to produce a healthy baby but also to help eradicate/stop HD from spreading to their children, and their children's children, and so on.

Congratulations, and how great to see this posting. You touched on some very very special points and freedoms that we take for granted in North America. But - in Europe - they (The International Huntington's Association) are discussing/proposing new genetic testing guidelines for HD that would:

(1) discourage PGD with no-disclosure (or without gene testing of the parent first) In fact the Dutch have forbidden this -- though there is strong argument that they ethically wrong: [www.ncbi.nlm.nih.gov]. I summarized the points at HDDW [hddrugworks.org] A point to note -- most centers will not do a sham procedure -- they instead will do another cycle.

(2) they suggest that genetic counselors "discuss" whether it is a good idea for a gene positive parent to have a child at all . . .

Great news! Best wishes!!!

Regarding what Lavonne said:

Here in Quebec (maybe in all Canada, I don't remember), as I understand, they won't proceed with IVF/PGD unless the at risk parent has tested. We were going to test anyway, so it was not a problem to us, but I remember the genetic counselor telling us about it.

The other thing is, the genetic counselor indeed played the devil's advocate with us and asked us if we thought it was a good idea to be parents knowing my husband was HD+. I have commented on this issue on other occasions, but I believe we're not being the worst people on the planet for going ahead with having children. We do have plans in case we need to protect them and I will only accept being held responsable for our decision by our kids.

On the money issue, you're so right Eric!!! People here in northamerica seem to have no problem spending 20000 on a car... but IVF/PGD to spare your children from an HD fate is considered expensive... now, I must say that right after we paid 4000$ for the PGD lab to start working on our case, a law was passed here in Qc that will allow couples like us to have 3 free tries. The catch is, because the goverment wants to avoid multiple births, they will only implant one embryo (great to hear someone was lucky with just one embryo!!!). I'm really glad we paid those 4000 because they guaranteed us priority on a long list of people that now want to give it a try.

Anyway, what I wanted to mention was that, the reason I don't understand why 20000 seems to be so much for so many is because even though it will be free for us, before the law was passed, we were ready to pay for two tries. And let me explain: we're immigrants, we came here 5 years ago with nothing (except a good education)... I have been a full time student for the past 4 years (so, just one steady income). I don't even feel we had to made so many sacrifices to come up with the money! I'm sorry, but I have a hard time understanding why everybody seems to always complaint about how impossible to pay IVF/PGD is supposed to be.
I think that the thing that is very hard is to spend 20000 with no garantees you will get something out of it. At least you get to enjoy your car for that money... but IVF/PGD is not impossible to pay in rich countries like the USA and Canada!!!

I was in favor of point #2 but now not too sure about that. Some families are ill equipped to have children be it because of HD or some other factor. I am not sure just because you get hold of an HD person who is pos. or at-risk that gives you the right for a mandatory or even suggested discussion that no one else has to have. Wouldn't the people who seek the PGD alternative already be the more HD aware people to begin with? Sometimes the European view is not well suited to American sensitivities and likewise the opposite. Here people pay for their own... and without government help.. I don't see the government having a say. The dutch are socially covered, so society does have a say, per dutch ethics and morals.

And if there is no alternative to PGD but to test to get it... those set on children and also set on not testing will just go the natural route and take the 50/50 chance. The risks of masking or of the procedure itself are no where near the risk of a 50/50 chance of HD for each child conceived naturally.

Also I find it odd it's referred to as an unethical sham if parents don't want to know a status of a genetic mutation. But in double blind studies of procedures, shams are carried out for the need not to know the procedure was real for a simple numerical outcome. So half of all those participants are undergoing ethical shams? Or would we then call it a placebo procedure? Can't people judge their own risk and reward with full disclosure of the risks just like they do in studies? What is the difference?

great points Eric and Luz -- I totally agree

These are very good points and philosophically debatable.

Luz, my husband and I went thru PGD in Montreal in April/May of 2009 and now have twins boys that are 9 months old. It was well worth it. I'm happy to hear they are now offering it for free, but I never thought of the back load of clients it must be causing! We still have two eggs waiting for us (not sure if we'll go back for them or not), but I never thought of how long the wait may be. It was well worth all the money we paid to know they are HD free! I don't know if it was because we aren't from Quebec, but we didn't have to go thru the counselling services they make "mandatory". We were lucky. I don't think my husband would have listened to them anyways!

Fender and Luz - best of luck to you both. I know that the topic has led to some heated debates on this forum but most of us who have children who are at risk or are hd+ understand the issue from one particular angle. I wish I had had the understanding that you guys have when we started having children. I hope everything goes great for you and your babies - you are doing a wonderful thing for yourselves, and your kids as well as your share in stopping a possible genetic line of HD.

you too sally! way to go!

Well we need to get past all philosophical stuff and use some common sense. To be honest I could care less about 90% of it as theory. We don't want more people with HD than we have to have. This procedure is sure fire, and obstaining from birth is the only other way. These are the only two methods of HD prevention. Any one who feels an HD upbringing is problematic.. fix it. We can socially support HD families and the children in them. Do that better and don't ask people to be unnatural families for "your" laziness. Lazy because talking people out of kids is a one time discussion with small payoff. Ethics have to be practical. where is the the ethic of social support? Or for family support which is needed despite PGD or not. Restrictive PGD is ridiculous. PGD is a cure for HD by prevention. Everyone knows they can pass on having kids totally that comes in for this procedure... duh! They aren't there to be talked out of a family, and they aren't there to be tested themselves either. They are having children responsibly. Personally I agree that growing up with an HD parent can be tough... I am happy to tell anyone why I feel so. I also think testing is generally for the best. However it's not something I think should be or can be mandatory. I don't think my views are of some moral or ethical debate... I just think they are the safest things to do. But not 100% satisfying for a lot of people, and those people that go PGD even untested and wanting to stay untested, is way better than the last option which is popping kids out at-risk. I am really tired of experts who don't have to live with this crap. I swear I can't relate to what half of them say in the least.. which to me makes them less than expert.

That's great, Sally! I'm really happy for you!
It's been long and the goverment involvement has made things more complicated... but, because we had already payed a part of the treatement, things went a little faster. The thing that made things more complicated for us is that my husband doesn't have any family here, so they wanted to study our case longer and run some extra tests, so they can reduce the margin of error.
I don't know if you got the chance to meet the PGD lab people, but I think they're amazing!
Let's hope we can be another succes story. I'll keep you posted! I'm starting next month.

BTW, seeing how many young adults like Eric's son means it's perfectly possible to have kids who despite an HD parent can grow up to be happy, responsable young adults. My kids don't have to be all screwed up...

Luz, we met Dr. Ao and another team member, but that was all. If you want any information or just to chat about everything, PM me. I love talking about it!

It is awesome to read all of these positive posts and recognize how aware our community is of PGD! When I started the process 5 years ago, no one knew much at all about it and I had to do tons of research.

Hooray for all of you courageous parents who are protecting your kids!!

My twin girls will be four next month. They are HD Free.

-Stacy www.HDFreeWithPGD.com