The Journey We Can Travel Together!
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To have kids, or to not have kids.

I have a 2 year old son. He is the love of my life, and my reason for breathing. Even when I was young, there was no question on whether I would have kids or not.... it is what I have always wanted. You know how in school, teachers would ask something like, What do you want to be when you grow-up? I never really had a solid answer. It took me a while to realize that I didn't want to have a regular career. I wanted to be a mother. I found out about the HD in my family a couple years before becoming pregnant. I was aware of the risks, but it didn't really have an impact on my desicion at the time. The disease didn't really become very real to me until this last year, as symptoms are progressing and I was finally tested. Recently I have been getting some flack from someone (not on this site), about having HD and having kids. I have to admit, that I have been giving it a lot of thought lately and I worry all the time about my son who is at risk and how it may affect him. I put my hope in the fact that there is research happening to find a cure and that it will be a reality at least by the time he is old enough to possibly be affected. Those hopes are only validated and substantiated by those on this site. However it has been made clear by this other individual, that I am selfish. And have made statements like, how dare I have the nerve bringing other lives into this world who could possibly be affected. Do you want to have kids to fulfill your own selfish desires, just for them to suffer then die. What happens to them if something happens to you, or do you not even care. Needless to say these statement, along with many other's have gotten to me lately. It does make me feel guilty and depressed. My dreams are being smashed. I thought I was doing a pretty good job of beating my own self up, then this person stepped in and well, they are doing a much better job of it. So how do you know what is right? How do you handle the questions of having kids?13 months ago
Hello Angie, I don't think there is a right or wrong answer to your question. Please don't let people make you feel guilty, you have a beautiful son who you adore. He may or may not develop HD. I lost my father to cancer when he was only 49 years old. I have a friend with HD who is 40 and her uncle is almost 70 with HD and still leads a productive life. She lost her father to HD, he was in his late 60!! Anything can happen to any one of us at any time, you need to live your life to the fullest girl as none of us know when our time on earth will end. Enjoy your son and again, please do not let ppl make you feel guilty. Have you decided to have your son tested? Lisa :)13 months ago
You know, I am in a similar situation; whether to have kids or not have kids, only I'm not married yet (will be soon) but I'm 24 and getting to that age where I'm thinking about that a lot. It's a hard decision to make. I don't think that that other person has any right to judge you based on that fact that you decided to have children. It's a personal decision, and people should pay attention to their decisions first and if they don't agree with you're decision, just let it be because they're not the one to judge you. I kinda have the same feelings as you for a long time, not knowing which "career path" I wanted to do, but now that I'm a bit older, I realize why that is. It's because I grew up in a house where my dad owned his own business, and my mom was always there just raising us. Those were my role models, so naturally I had a vision that I wanted to be a wonderful mother just like my mom. Whether or not I will have kids, I don't know. I'd love advice on the topic too. But I just wanted to give you my thoughts on it. Also, I agree with what Lisa said, because my great-grandfather who had HD lived a long life and my dad told me that he was still out on his tractor when he was very old. Don't know how old, but that gives us hope because HD doesn't necessarily mean that your life will be cut as short as we think. It all depends. Also, my dad's cousin died in a plane crash and he was only 50 or so. When it's our time, it's our time. Sorry this is a little long. Melinda13 months ago

Tom
Curious - if you were to have kids and there was a way to remove the genes for HD - would you? I have two children - I wonder I should test them or should I wait till they are are older?13 months ago
Every child of a parent who carries the HD gene has a 50:50 chance of inheriting the abnormal gene. A child who inherits the HD gene will eventually develop the illness, although usually not until adult life. If a child does not inherit the HD gene, he/she will not get HD, nor will their children: HD does not "skip" generations. so Tom if you are not HD+ then your children are safe. unless your spouse is HD positive. hope this help13 months ago
Nobody has any right to attack you on that personal choice that you made. Don't let people make you feel guilty. I have 2 children and I am HD+. My son came along long before I knew, we tried and miscarried twice, then finally my daughter came along after I had found out that I was positive. I will admit that the decision to have our daughter was selfish. We had gone through two miscarriages and my heart was broken and set on having another child. The only thing I can do is pray and carry hope that one day there will be a cure or something that will help out alot. WIthout hope or faith, life isn't worth living, without my kids, life isn't worth living either13 months ago
I certainly think this is a personal decision and one that you should not be judged for. Congratulations on your beautiful son!13 months ago
Thank you for all your kind words. I had always just thought about it as one more thing to deal with.... like cancer or an accident. You know, something that cannot really be controlled, but has to be dealt with. This person was really playing into my emotions, and it got to me. I could not imagine my life now without my son. I hope to have more children, but as of right now, I am not too sure about it.13 months ago
I am so glad to know that I am not alone in this struggle. When we found out I was positive we felt almost obligated to stop the gene from passing to any more generations. They told us we could go through genetic testing in vitro but there is only a less than 35% chance that it will work and I would become preganant. My husband does not want to have a child naturely at this point. He has been supportive in my health but when it comes to this decsion he is standing his ground. He has said he really does not even care if we have kids because there is so much for us to do before I start showing HD signs. The problem is I think I want a child, a family , and he does not want to talk about it. I don't know what to do because it is killing me. know it might sound selfish but I always thought I would be a Mom.13 months ago
Wow, that's a small chance with the invitro. We are kinda in an opposite type of situation. I feel like I wouldn't want to take the chance of passing down the HD gene, but my fiance would love to have kids the natural way even though he knows I'm at risk (of course this would be after we get married.) I don't know the results of my test yet, but the issue is still always on my mind. I've always wanted to be a mother too. I know it's not fair that we have to be in the position that we feel "selfish" for having a child, something that is just a given for others that don't have to deal with HD. I wish you luck in coming to some common ground with your husband.13 months ago

DCB
This as much of the HD testing process is, a personal choice. my 1st son was born prior to knowledge of HD, and my 2nd son was a fetus at the time of my genetic testing results--at the time, I had him tested by CVS to be sure he didnt carry the gene- at the time, if he had carried the gene , he would have been aborted - sorry to say - but he is Neg for HD so he is with us today 4 years later. I had my tubes tied after his birth. A few months ago we had a scare-{yep found out even after a tubal, pregnacy can happen} during my "waiting" I considered my options again, at this point, I decided that I wasnt going through the CVS again and if I was pregnant, God must have a reason for this one too. Turned out I am not pregnant again--but was able to give alot of thought to the issue-There is no reason just because we are HD Pos that we cant have kids--We and only we can make that decision, we know what is right for us and our families--There are numerous genetic diseases our there and we are fortunate enough to be able to test for ours- but that doesnt take away any natural rights - we just have to be sure we are prepared for our decision--And just to add, there are ways to have a baby today semi naturally that is hd neg------sorry the babble, but my basic idea was that it is a personal choice and those who think they need to add fuel to the fire, just need to be told .....13 months ago

I agree that it totally downright sucks to have to think it "selfish" to choose to have children.  Life is not fair...but I do think this is the hand we were dealt.  We're lucky that we do have options to be sure that if we do choose to have children, they do not have to be at-risk.  If you want to see how, please check my profile and read the article I just posted.  There is a link to the article in written recently in the Globe and Mail (major Canadian publication) about my brother, a researcher at U.B.C. working toward a cure for HD) as well as a link to a video online...both talk about how he does the work knowing he's tested positive for HD and how they had twins (one boy and one girl!!) free of the risk of HD.  It's amazing stuff that we should all be aware of. 

Peace and <3

12 months ago

i am glad we did not know about my husband's positive status before children.  i would never do anything to change having them in my life.  every day i deal with the fear that one or all of them may have HD someday.  when those fears creep in i just tell myself that no matter what, we are never guaranteed tomorrow.  i just have to find the peace and the joy and the beauty in every day with them.  oh yeah, and the same thing with my husband. :-)

12 months ago

Deciding whether to have kids when HD is involved can be very difficult and no one can tell you just what is right for you.  Each person has to consider his/her situation carefully and responsibly.  I was in that situation and decided to have HD Free kids with InVitro (PGD).  Now I have healthy HD Free twins!  Please visit my website if you would like details about the process www.HDFreeWithPGD.com.  Also, the chances of getting pregnant are far better than what is posted above.  Let me know if you have any questions!

12 months ago

Well, I think I am the only male in this discussion :) I apologize for my Engish, I am Italian. I am HD+ and I don't have kids. Me and my girlfriend would like to have kids, and every day we ask each other waht we could do. Sometimes I think that we shold have "natural" childrens, because I believe that the cure for our desease is very close. Sometimes I think that this is wrong, and that the only way is the articial insemination. We are wasting time looking for the right solution :((( I think that I will get in touch with the website proposed by Stacy.

10 months ago

Lee

Nicola, you are not the only guy. I am not tested positive but am at risk and my wife and I decided 10 years ago to have children. They are perfect in every way (even though they may at some point test +ve for hd) and I wouldn't change them for the world. Even if I am HD +ve then I still would not change anything. I think about their risk all of the time but I think about them crossing the road, talking to strangers, doing well at school and yes, of course, I also think about HD. Deciding to have children is not selfish. Think about it this way: The people on this board here are spending probably more time thinking about their partners and their children than a lot of other non HD people are. There are a lot of people out there who have children and don't look after them properly. To me that is more selfish than someone with HD deciding to have children.

10 months ago

I know what you mean. I had two children by invitro fertilization. The first child I had no idea HD existed, also had no idea what it was. I did go for amnio. everything was fine. When my son was 3 yrs. old I received a call and was told my older brother had HD. I was upset but he is 14 now and I am fine, showing no signs but have not been tested. I had another child 5 years ago. Invitro again but donor egg.  I totally understand what you must be going through.  There are alot of people out there who don't care for their children properly. They are th selfish ones. Don't let people make you feel guilt for wanting to be a mom. That is a natural desire for any woman. Bless you.xo

10 months ago

I agree that having children when you know you carry the HD gene is not selfish.   I'm also gene positive.  I ask myself what if my mom had decided not to have children to avoid passing on HD.  I can't say that I'd rather not have been born even though I will someday develop HD.  Even if they have the gene, your children may live full rewarding lives before ever developing HD and they're will be some helpful treatments if not a cure by then.  Nevertheless, I chose to have a child with IVF and PGD.  My daughter is now 2 years old and it is a relief knowing she can never develop HD.  Now, I'm now trying to decide whether to have another one.  Since I'm turning 40 this year I'm worried that I could develop HD soon (my mom was 45 when she first started developing symptoms) and it  would be hard to care for two young children if I were symptomatic.

9 months ago

Dave is HD + and when we found out 2 years ago we were trying to have a baby but after the first miscarraige and simultaneously finding out that Dave was ill with HD, we decided to stop trying mostly because we were very overwhelmed with the news. We didn't know how long Dave would have since he's been symptomatic for 2 years and well..there are lots of times now that we wish we can have a baby but we are also caught between our family and friends who believe we should not have a baby. Dave and I love each other very much and I always wanted to have a baby with Dave but we haven't tried again, due to the fear of the baby being HD + . I am proud of you for having your babies. Those babies are our future and they will lead the path and make very important contributions to our world,so I'm glad you were courageous enough for doign what your heart knows to be right.

6 months ago

You should never feel guilty about having a baby!  Back in the days before you could test for everything under the sun, people just reproduced... plain & simple.  I am at risk of HD and knew it before I got pregnant.  I'm not prepared to get tested for the gene, because I personally don't want to live my life with that knowledge hanging over my head.  If I have it, then I have it - which means my son (and future children) might end up being HD+ too.  But my husband and I weighed up the options and looked at how much R&D is going into this disease, and we figured that by the time this affects me personally, there may be treatments and even a cure.  Lots of people with cancer and other genetic diseases in their family have kids.... it's not that much different (just greater odds).

I love my 9 month old son more than anything, and know that he is going to grow up into a beautiful person.  I was chosen to be his Mum, and I'm going to do whatever I can to provide a loving and nuturing environment - with or without HD.

5 months ago

HELLO ANGELA, I HAVE SOME ADVICE THAT (HOPEFULLY) WILL HAVE SOME I TRY NOT TO WORRY TOO MUCH ABOUT STRANGERS' OPINIONS ON HOW I HANDLE MY ISSUES WITH HD. I JUST TRY TO DO WHAT FEELS RIGHT IN MY HEART. WHILE HOPING THAT MY: FAMILY; FRIENDS AND DOCTORS WILL SUPPORT MY DECISIONS. BASICALLY, I AM ONLY CONCERNED  ABOUT THEIR ADVICE BECAUSE THEY REALLY KNOW ME AND CARE ABOUT ME. IT DOESN'T MEAN I ALWAYS TAKE THEIR ADVICE BUT AT LEAST I LISTEN TO IT...  -GOOD LUCK, ERIC

3 months ago

DQL

Angela,

I had already had my 3 children when I learned my mom had HD.  We were trying for a 4th at the time and my husband and I decided not to go forth, as we could not bear to think that any one of our children might have it.  I think there are so many complicated, highly emotional, sides to this issue. I do think it's hard for young people, just starting out, to really conceptualize what it would feel like to hear that their child might have it, as you can't really understand the depth of that relationship until you're in it... as you know with your son.   YOU have a son, you're not thinking about it, you have already chosen that route.  Don't regret that, as the joy you share is too precious.   The advice that jumped right off the page for me, was:  drop  that person in your life.  No one needs to have people in their lives who only bring pain and judgement.  YOU can make that choice.  Don't allow someone els to judge you.  If you can only turn that perception around and see that they are judging your child too, I find it so much easier to be objective when it's not about me (it's easy to judge ourselves).  When it's about my kids, back off!  This person is truly toxic and I hope they are not someone close to you, because it seems you would be much better off if you let that relationship go.   As for the issue of having children, I do want to add that adoption is a wonderful option for families who are HD+ and want children.  So many beautiful children want nothing more than to be loved and be part of a family... my close friends who have adopted (2 of whom have biological chdn as well) would tell you that the love is no less for children who you don't give birth to... you birth them in to your family and they are your life.

3 months ago
I am not trying to be judgemental, but so many people that have HD or a gene positive and have children think that if their child develops HD they will be much older. Not in my case, however. I have juvenille HD. So that is something to consider. Not everyone has the luxury of being in their 40s or older before they become symptomatic. Personally I feel if you are going to have kids, then you should do IVF or CVS testing, to make sure your child will not have the HD gene. I will not have kids. It will be hard for me to take care of myself never mind kids. I didn't get the chance to fully live my life.  
last month

I think it's a very personal choice and no one should try and make you feel guilty about it.  I am getting married next year and am going for testing shortly.  My reason for testing is so I can make my own informed decision.  If I am HD+ I wont have children but that's due to bad gene's coming from mum's side as well (Lupus) so I wouldn't want to pass on both.  But in saying that I want desperatly to be a mother but will just look at different options (I may look at not having children even if I an negative, due to Lupus).  IVF is always and option, I wish that adoption was more of an option here in Australia but due to HD (if positive) and Lupus they probably wouldn't look at us (goind on the research we have done).  I would love to adopt more than anything as there are so many children out there who don't have someone to love them unconditionally.  My partner want's us to have children naturally no matter what but I am pretty set in my thinking.....we are still under negotiation!!
But no matter anyone's decision it is a personal one that you should not have to answer for or feel guilty about.

3 weeks ago.

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