Hey all,

We just found out that we are about 8 weeks along, very very unexpected, but not a bad thing. just got done with the first appointment, lots of medical history. I was excited to know that our nurse/dr. are very familiar with HD, and one even works daily with a lady that has HD. My question starts with is there a "different" way that we need to handle our pregnancy? I aksed a few questions but didn't have that many considering I was very unprepared to have a nurse and dr. be so educated on HD. What do we do? I haven't been tested so I'm not sure if it would be important or not that I be tested. I don't think i'm ready for results, but undestand that It isn't just about me anymore- so is it neccessary? The Dr. said she could go ahead and order a test since I went through the genentic counceling, and said If i had any questions or concerns just to call. If I had it my way, things would have potentially been a bit different in terms of our pregnancy, but of course it's a little late . So again, are there specific things that I need to do because I'm at-rsk?

Thanks for your POSITIVE input!

Zach

Congratulations on your happy news!

If you are planning to go ahead with the pregnancy regardless of whether you or the baby would have the gene, I can't see any special need to test. It depends on what you think is best for you.

Zach

Congratulations!!

As Marsha asked - what are the intentions. If it does not matter what the results are then there is no reason to do anything else but enjoy the pregnancy.

I had 2 pregnancies with out knowing. We were trying for our third when I decided to get tested. We stopped trying - however - someone had a different plan. I found out I was pregnant two weeks before I found out I was gene positive. I am not sure if we would have had the third if I knew I was positive so it was taken out of my hands.
My boys are the center of my life and I would never change that.

Good luck

Stacy-NJ

How would they test a baby? Is it through the amniocenteesis? thing?? or just a simple blood test? not sure. has anyone here tested a baby before birth? if so what were your experiences, what would you change? ...if you don't mind sharing.

We are keeping the baby regardless, but just want to know if there was a "special" protocol to follow, or if we needed to handle things differently then the normal pregnancy.

If your going to keep the baby , I wonder if they would test for the HD gene . I am not sure , but if they will not normally test children , I can not see them testing your unborn baby . I hope all goes well for you . Congrats . db

db is right. They won't test the baby unless you say that you are planning to abort following a positive test. Otherwise it is considered to be a violation of your child's right not to know.

I was pregnant with my first when I found out about HD in my family. Big shock. But I thought as selfish as it sounds, fate had decided. I was 24 and knew nothing of HD. I had my beautiful daughter (now 8 and a half). I met my husband years previously, but did not get together until 5yrs ago, I told him about my at risk status and he said STUFF IT and had Jess (now 3yrs). I tested gene positive in Aug 2007 and wish I had been a bit more responsible. Easy words when I have my family. I was sterilized last month as I did not want having to deal with accident pregnancies. I LOVE children. I never knew about JHD. I don't know what I would have done with the knowledge, I won't lie. I hope I do not pay for my relaxed attitude. HD in my family prefers no chorea and my Mum is 51yrs and early stages. My CAG is 43, My Mum's and Nan's cag 42. I hope to have raised my children before HD sets in. But I adore my children and have a clued up husband to step in, if necessary.

You don't even know if you have HD!

Congratulations and may everything go as expected, sleepless nights, yucky nappies and absolutely the most precious gift in the world.

Congrats, similar to stacy - NJ, I have one child who I was pregnant 4 prior to HD knowledge and my 2nd little guy I found out about shortly b4 I got my own gene pos result. --
We did have him tested in Utero with a CVS at around 10 weeks. it turns out my youngest is gene neg. I do know that my plan was not to have any more kids if I was gne pos--so I thank God on a reg basis that he gave me this "little Suprise" We named our youngest Jonathan -"a gift from God" we joking say that the meaning of the name is "our test from God" But both my boys mean the world to me and my hsbnd and I wouldnt ever consider changing things now
-Testing for you or the baby right now is totally up to you, I dont see any special precautions that need to be made. I do not remember ever telling a doctor that I would abort if the test on Jonathan was pos, but I may have, my world was spinning at the time and my personal plan was to abort.--but I do know that -- My hsbnd would have done everythng to change my mind and to keep him no matter what--so if I did tell a doctor I would abort, I also know it was my right to change my mind and not.----------but on the flip side --- you have to consider that finding out your unborn child is gne pos, would also mean that you are, then that would add alot of stress to the pregnacy and to you, and are you ready for that as well.

I tend to babble - my apologies- my suggestion to you is to enjoy your pregnancy, if you decide to test later than do so--and know there is alot research coming together right now, and if you unborn baby is pos, they will hpefully have a treatment when it is needed.

Of course my wish for you is a hd free you and baby, but I also wish for you a healthy baby, who wakes you at night {several times}, a toddler who will prob break everythng precious you own, A preschooler who will ask why? why? why? so many times you want to slap them silly , a kindergardener who thinks its funny to hit mom w/snow balls or water balloons,etc etc.

kids are a special gift from God, and my gifts are about to beat each other to a pulp so I will go w/that and go save them---{not sure why, but thats what a mom does}

DCB

DCB and others thanks soo much. My concern would be that of JHD I think? I wonder, if the procedure isn't invasive if you could maybe test to see if the baby is gene positive... but skip the yes or no of that and only ask about CAG, say if it's above a certain point or not. I don't know, I keep thinking about this all, and yes it's a little overwhelming. Maybe I will just go about it like my mom did, or a lot of other people and just hope and pray, and youre right... by the time my child grows up there will probably be a cure, or at least a heck of a lot more chance then there would be finding one tomorrow i guess... who knows. Thanks again... everyone.
Zach & Kelly

Congrats Zach!!!!!!!!

Aww Zach Congrats!!!

thanks guys... i'd add a picture of my fiance and i but i couldn't figure it out.



Edited 1 time(s). Last edit at 01/03/2008 07:10PM by Zach.

Congrats Zach!

All you need to worry about if you will not test the baby is how to make sure that baby is taken care of if you get sick. Once you are set financially and secure with insurance then start to worry about how to finance the expensive formula and diapers

Zach, just send your photo into Eric at:

hdacphotos@gmail.com

Would love to see it!

Zach,

Congrads!!!

I talked to my genetic counsilor about my options on how I wanted to have children just testing pos myself. She talked about a procedure where at 10 weeks and no earlier they test the embryo for HD. Now they do say that their policy is they will never test a child unless you are willing to terminate if pos for HD. But I would have to agree with everyone here if you are going to keep the baby then dont test. it will just make things very stressful. I do see your concern with JHD. I hope the best for you, your wife, and your presious little one.


Violet

Zach

Congratulations!!!!

My personal experience is that they could test the baby in utero (aminocentsis or however you spell it) and it would be my option whether to continue the pregnancy at that time.

I looked into the test and felt that the risks of performing the test itself were more than I wanted to elect to do. Besides, what it would do is confirm your status also if it were positive. Neither result if positive (yours or the babys) would give you any options at this time.

I personally would just let this be the gift from God you are receiving.

You already mentioned you did not feel ready to test. Why taint such a wonderful occasion. Plus I can't imagine the stress you could potentally cause your wife whose main focus right now should be nuturing a healthy pregnancy.

Just my 2 cents....

Hi Zach,

Congrats to you both,


In Australia we cant have the embryo tested unless the person at risk has been tested for hd.I only know this cause with our first pregnancy my dr wouldnt test the embryo unless my husband had been tested.We couldnt abort a pregnancy so decided to have her(she is now almost 5)
We didnt really understand hd then like we understand it now.

A few years later we decided to test.My husbands reults came back negative.We now have a 9 week old baby boy.If his reults came back in a different way,we would not have had our second child.

You say you are keeping the baby regardless,if your not ready yourself to test then dont go stressing yourself or your wife.ENJOY the pregnancy,enjoy when bubs arrives.Make your decision to test after you enjoy bubs.They grow up to quick.

I wish you all the best for a happy & healthly baby.
Take care
Julie

Congratulations Zach & Kelly on your pregnancy. Enjoy!

Congratulations Zach... Julie said "they grow up too quick". Not my experience. Practice these words. "You are are 8 yrs old for gosh sakes! When are you ever gonna get a job!?"

Congrats Zach and Kelly! And I beg to differ with Eric...it seems like you bring them home a sweet little new born and the next day they are headed off to College....sigh