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? for everyone...I think I may have done something bad
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? for everyone...I think I may have done something bad

I didn't know that my husband was at risk for Huntington's disease (HD). For those who do not know what HD is, it is a neurodegenerative disease that is passed on from parent to child, needing only one affected allele (copy of a gene, humans are diploid, meaning we have two copies of each gene) to develop the disease, hence this is a dominant genetic disease whose onset is around age 40. Recently, three days before I found out that I was pregnant, his mother tested positive for HD.  My husband does not want to get tested, and now I am worried that my unborn baby may have it.  I don't know what to do, this disease is nasty, I see how it is affecting his mother.  Ultimately, this disease is fatal.  My husband is 43 and has no symptoms, but they can occur at anytime.  I can do CVS or amino on the baby, but if the baby is positive, I know that both the baby and my husband have it. I don't know what to do, I am so stressed. Now that I feel the baby move, I am so sad that I may have done this to my baby.
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Avatar_f_tn
Well, you didn't do it intentionally. I'm sorry for all the worry you have to go through. Like you said, Huntington's is a horrible disease. I personally would not do an amnio. Maybe with time your husband will come around and decide to get tested. Good luck to you.
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184342_tn?1282592350
You need to make this decision with your husband.  My grandfather died of huntington's and my father died 3 years ago of huntington's...  I have been to see genetic doctors at John Hopkins-- years ago,  my father participated in studies there...  it is terrible...  BUT...  they are making so many advances... when my grandfather had it they didn't even know what gene it was-  from your post you know that they now know...  I have two brothers...  my youngest brother has been tested and was negative, he is 24...  I am 31...  fortunately for us I knew about the disease before my husband made our decision to have children...  I do not want to be tested.  I do not want to know...  there is no treatment, no cure---  AT THIS TIME.....  BUT they are working on those things every day, and if there is ever a treatment, I would probably be tested...  

Let me go on before making my opinion for your situation.  When my mom and dad had children the disease was not known in our family...  my grandfather was adopted, so by the time he had his on-set they already had my brothers and I...  very similar to your situation...  I am SO glad that I was born by then... because what if I have the gene-  obviously my father had it...  I could have it...  but I am 31,  I am an architect (a good one, I think), I have a wonderful husband and a beautiful daughter (wow,  this is actually making me cry),and a son on the way...  I have had a very full and wonderful life in the 31 years I have been here...  and I hope to have many more... and if I do have this horrible disease I would never in a million years wish my parents had aborted me to spare me the disease...  my uncle also has the disease,  he is in his mid 50's has beautiful grandchildren and is SO happy...  he struggles,  but I can see everytime I see him how happy he is,  and he is living with it... not just dying of it...  my dad didn't have that great of an outlook on it-  I think he was just dying of it, which is why he didn't live as long as my uncle is....

My husband and I decided that our children could get cancer from his family (it runs very strong in his family), or they could be in a horrible accident and killed at a young age---  these are things you don't want to think about-  but life is fragile, and anything can happy-  our neighbors daugher (8 year old) is struggling with a rare bone cancer-  so heart breaking to see...  but huntington's as you said typically does not set in until later in life---  therefore by the time your unborn child will start to have symptoms of it, just think of the treatments they might have out there!!!!!

I think knowing now that I will get this disease later in life for sure would just,  well,  it might make me start living like I was dying, and I don't want to live that way-  which is probably how your husband feels...  do not do the CVS unless your husband agrees to it.  I assume you posted to get opinions, and mine is this-  your baby has a right to a life, she has a right to be born and get married and become an architect with 2 children...  and she will love you all the same, even if she does have the disease... and hopefully when she grows up she will know for sure that her dad did not have the disease and therefore she will never have to make the decisions you and I are forced into making...  but give her (or him) the chance...  even if they do have to make this difficult decision later in life.  The life they live will be worth it...  

It is a personal decision.  It is for sure, and my take on it might not mean that much....   but do not, please do not, make this decision without your husbands FULL support...  I think that is very important....

Let your husband and your child make these decisions...  I know you have to live with it...  I know you do...  I can't understand how you feel,  but I look at my grandmother, who had 4 children...  she has buried her husband and one son... and might have to bury another...  I can't imagine how she feels...  but I can try to...  and my mother is in a similar situation-  at least she knows for sure that one of her children does not have it,  but me and my other brother will not be tested...  we don't want to and don't need to know...  I know my mother would like us to,  but she completely respects our wishes and understands them...  

It is easy to say I guess, although I am where you are too...  but try to think of me...  my parents didn't know until I was here...  and I am SO glad, because I love my life,  and your child will too.....  so try not to worry about it-  life is life and anything can happen at anytime...  don't spend time worrying about the what if's...  just live each day and enjoy that little baby!  My daughter is wonderful,  and I know she will understand our decision to bring her into this world, even if she ends up at risk and has to bury her mother because of it...  

wow,  I hope a client doesn't stop by...  I am really a mess now!  ....  good luck and please,  just enjoy your baby....  they are wonderful!
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Avatar_f_tn
Beautifully said!!!
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134578_tn?1404951303
Amen.
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Avatar_f_tn
Tatorbug, you said exactly what I was thinking!!!
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184342_tn?1282592350
I wanted to add one thing.  

You obviously found out about HD being in your husband's family recently...  I am sure before then you never heard of it or if you had, you hadn't given it much thought.  What I wrote above are feelings that came from years of living with this disease in our family.  I was 12 when my grandfather died...  I never remember him before he had the disease, he was always "goofy" and I never understood a word that man said!!....  my dad lived for about 10 years after he started to show signs of it and we knew it was in our direct family line....  there were years of crying, anger, fear....  and I was single with no children...  I was afraid noone would want to marry me if they knew that I could get this disease... I went to support groups for it-  I found some in Philly...  you may want to look for some in your area.  It really helped me to cope with it better and helped me to come to grips with it---  so did my husband being so supportive....  

It is hard to have a positive attitude when you are thrown into a situation like this.... and I don't want you to think that it was easy for me to come to all of those conclusions written above...  it might take you a while...  but don't feel bad about how you are feeling either...  it can be scary....  but I go back to all that I wrote above...   hang in there...  it will get easier...  I promise....
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221025_tn?1332558946
My sister has three beautiful daughters.  Her oldest was born "normal and healthy."  Her second daughter had odd symptoms at birth that nobody could identify - several weeks later, a diagnosis was made of Non-Ketotic Hyperglycenemia and Agenesis of the Corpus Collosom.  It's a rare recessive gene disorder that requires both parents be carriers to pass on.  The baby was given only a limited amount of time to live.  She is now three and a half years old.  Each time my sister and her husband have a baby, they have a one in four chance of having a baby with disorder.  They got pregnant again and their third daughter only lived for one week after birth.  Each girl is special and unique and wonderful and loved.  We questioned why two of her girls have been born with a terminal disease and why one was taken so early.  Our questions have been answered - these girls have been such blessings - my family is very religious and the girls have given us an opportunity to talk to others about our faith - my sister's second daughter has touched people's lives in more ways then I could ever take the time to explain on here.  I know that it is possible that I am a carrier for the same disorder - we are currently expecting our first child after sixteen years of trying - if my husband would happen to be a carrier as well, we could be looking at a similar outcome - but I also know that if my child is born with NKH, she will be loved and special and made exactly how God intended for her to be made - your little one will also be special and loved and you will treasure every single moment with her, regardless of whether or not you have one week with the baby or if you have sixty years!
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224208_tn?1210288173
My husband doesn't really want to talk about everything now, I respect it, but it's hard for me.  I am only 24 and he's 43, so I will be taking care of him if he has it, and we will both try to cope.  We are both very independent people, and I know it scares him.  I am currently two years into my biochem PhD program, so we have studied about HD as a model for genetic disease. I understand everything about the disease, down to the cellular level.  I keep up with the current research, the mechanisms of the disease and mutated protein huntingtin, things they never taught us in class. But all that doesn't prepare me for when someone I love might have it. He was 5 siblings too.  They decided not to get tested, especially because of insurance ramifications.  Just because my husband and baby are at risk doesn't mean I love them any less.  I thank you for sharing your experience, it's good to hear from someone who is dealing with this as well.  I have contacted my local HD chapter, and have spoken to the social worker.  My husband decided he does not want to talk to anyone right now.  So, I know what resources are there when my husband is ready.  I guess it's hard right now, because I feel like I am the one looking through the glass, while my loved ones are going through this.  My husband does not want me to tell anyone in my family, but I got to the point where I had to tell my mom, I couldn't deal with this on my own, my husband did not want to talk about it.  She's concerned, but knows I will be by my husband's side whatever the outcome is, I didn't take my marriage vows lightly, I meant what I said.  Hope this isn't coming out defensive, this all has been floating around in my head lately, especially since I felt the baby move.  Once again, thank you for sharing your experiences, I didn't mean for this to make you cry.
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173820_tn?1224939758
this exact situation happened on this week's "private practice" except it was the wife and not the husband... I do not know anything about the disease except for what was said thru the show, I do believe its only a 50% chance your dh will have it, and the same thing with passing it to child.  I do hope everything turns out well
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224208_tn?1210288173
I saw that episode too, so did dh.  Each parent contributes half the chromosomes (23), meaning the sperm contributes 23 and the egg contributes 23 for a total of 46.  So, if a child has a parent with HD, that child has a 50% chance of inheriting the affected allele (the affected parent can either pass on a normal allele or the HD allele).  And, the disease is autosomal dominant, meaning that a person needs only one copy of the allele to have the disease (autosomal, meaning not on the sex chromosomes X or Y). The affected HD allele encodes a protein with a triplet CAG expansion, which causes DNA instability and aggregation in brain cells. HD is a neurodegenerative disease that gradually causes cell death in the brain.   This cell death manifests itself in various ways in the body, by causing impaired movement, inability to talk, obsessive-complusive like behavior, inability to chew food, etc. memory is not affected as in alzhemier's. Normal onset is around age 40, although cases have been shown in those young as 2. Currently, there is no cure, although several drugs are clinical trails. Those with the disease usually die from complications of the disease, such as choking, etc.  It's a very tragic disease and many choose not to get tested because there is no cure.  Hope this helps.
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184342_tn?1282592350
Also,  those support group are not only for your husband.  There were more care givers there then "at risk" people...  almost all of the people there were caregivers...  

something for you to think about.

And in our experience the chewing thing doesn't happen until MUCH later in the disease-  heart attacks are what have caused the death in both people who have died in my family, both early 50's...

So sorry you have to deal with it---  
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177988_tn?1266802499
I saw Private Practice also and agreed with teh perspective they ended up taking.  Despite having something like this, I think someone deserves to live their life to the fullest and not in agony of what is to come.  Just what I think.

And tator, that was very touching how you responded to the poster.  You are always so caring and supportive!
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184342_tn?1282592350
nikki... thanks...  your picture is TOO CUTE!!!!  
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