So stuck.

[MissMay81]

I am 7 weeks pregnant today and am considering a termination as much as I really don't want to do so.

It was confirmed that I have the horrible Huntington's Disease gene and so there is a 50/50 chance that any children I have will also have it.

For those who don't know, HD is one of those horrible, horrible genetic disorders that is incurable. It's usual onset is between 35-45 and in time will be unable to care for myself. I won't go into detail, but you hopefully get the idea that it's not pleasant. :(

My problem now is that, even though it can be tested by CVS or amniosentesis (not sure which) but by that time (12 weeks+) I don't think I could terminate.

But terminating this early, I will never for sure know whether my baby would have this same stuffed up disease. But if I did leave it, test it and found to be positive for the disease, I wouldn't be able to terminate, I just know I couldn't. But I'd feel enormous guilt that I've brought a child into the world who will go through the hell of this disease.

If I do terminate before the test, I will be forever wondering whether my baby would have the disease. I didn't plan this pregnancy and am not with the father; stupid thing to do on my behalf. This makes the situation a whole lot worse.

I'm not sure why I decided to write this here, I guess I'm just looking for a bit of support, as everyone I've spoken to has told be it's irresponsible for me to terminate (not knowing of my health condition though.). So, I'm officially stuck and have no idea what to do, and barely any time to think about it. :crying:

I wish this stuffed up disease never existed and would never have to face this stupid decision. :crying: :banghead:

Thanks for reading; sorry if it got a little messy too.

[c2p08]

I just wanted to offer you some :hugs: my grandad has huntingtons and i've seen what it does to him, he is now in his very late 70's and at the stage where hes unable to do alot for himself, so far, noone else in my family is displaying any signs what so ever of it (not sure if anyone will in the future though)

I hope you decide what ever is best for you, not just out of fear but a truely informed descision that you can live with.
:hugs::hugs:

[RoarsomeMum]

:hugs::hugs::hugs::hugs::hugs: I am sorry you are having to go through this. I think Amnio can be done as early as 9 week's (not that it helps, can understand the fear of waiting and attachment *more hugs*) My heart breaks for you... Wish I could be more helpful.. xxx

[BigRedV]

:hugs:

I really just wanted to give you hugs. It must be so hard.

[amandaw]

no advice, but :hugs: and more :hugs:

[4OnEarth1InHeaven]

:hugs:I don't really believe in abortion therefore don't ususally post on these, but as a PP said i really hope you get the chance to make an informed decision. And just remember everything happens for a reason. It will be a hard decision to make, and i really hope you can come to one that you are truely happy with. Once again :hugs: to you.

And i just want to say so none of this is taken the wrong way that i am only offering support no judgment :)

[misskittyfantastico]

No one should ever have to be in your situation.:hugs::hugs: Know that you have support here.

[gizmoduckus]

:hugs::hugs::hugs:

[FullMoon]

Good Luck Sweetheart!
Amnio can be done right now. Test and then make an informed decision.
What ever is right for you that you can live with which ever option that is for you!

[licorice]

I would strongly encourage you to seek professional support from the genetics team or genetic counsellor that you saw when you had your predictive test for Huntington's Disease. If you have moved since that time any genetics service in any state in Australia would be happy to support, assist and provide accurate information about testing available in pregnancy. These services are trained to support you during this time, even if you are in early pregnancy and unsure about how you wish to manage the pregnancy.

[KatiesMum]

I would strongly encourage you to seek professional support from the genetics team or genetic counsellor that you saw when you had your predictive test for Huntington's Disease. If you have moved since that time any genetics service in any state in Australia would be happy to support, assist and provide accurate information about testing available in pregnancy. These services are trained to support you during this time, even if you are in early pregnancy and unsure about how you wish to manage the pregnancy.

:iagree: I totally agree.

I would definitely see a genetic counselor. They will be able to help you to decide what is right for you, and give you support and information and counseling through it all.

Best wishes.
:hugs:

[Chickadee]

I didn't plan this pregnancy and am not with the father; stupid thing to do on my behalf. This makes the situation a whole lot worse.
:hugs: mistakes happen and a lot of women have been in that part of your situation before.

On a hypothetical basis, had you thought at all before about having kids, either before or after you found out you had the HD gene? Putting aside the fact that you're already pregnant, if you want to have children then this choice may be one that you'd have to face anyways, at some time in the future. I think that's where the genetics counsellors would be able to really help see a path through this.


:hugs:

[MissMay81]

Thank you for your replies and kind thoughts. I've decided it is best I listen to your advice and go to a genetics counsellor and speak to them about the whole situation and what may be best to do.

I didn't know amnios can be done so early, I'll probably have to talk to them about that too.

Chickadee ~ I did want kids, but since I found out I was positive for the gene, I haven't wanted to at all. It's amazing how something you really want can change so quickly. But now, it seems like I'd love to have it.

Again, thanks for all of your thoughts and advice, it's been great to read such lovely support. :)

[4OnEarth1InHeaven]

:hugs: It is great you are not rushing into a decision, you are making the right choice by speaking to a genetics team and seeking an amnio. I hope you get the answers you want and need. :hugs: Best of luck to you.
And just know no matter what decision you make you will find support here. :yes:

[SomewhereOverTheRainbow]

Wow, what a horrible decision to have to make. :( I think you will be doing the right thing, visiting a genetic counsellor to see what your options are.
To me, it doesn't sound like you want to have a termination, so if you do decide to have the bub there are many positives....

In 30-40 years time it is likely that there would be new treatments and outlooks for people with this condition? Maybe there would even be a cure?
Also, if your bub did have the condition he or she would probably still have many many years of good health and a good quality of life etc.... something that can't be guaranteed of course, but then when can it be guaranteed? You could have a child without HD who has other problems that manifest later in life etc... you just can't be sure what will or won't happen regardless of what the amnio says.

I can't imagine having to make the choice you have to. :hugs: But at the same time I also wonder how many diseases etc we all carry genetically that can't be picked up through testing yet? Life is just too full of uncertainties IYKWIM?

Good luck with whatever you decide. :hugs:

[julietv8]

Sending my support for you, I hope that the outcome is positive and that you get the medical and emotional help that you need to make this decision.

:hugs::hugs:

[mum_I'm_hungry]

Hi, I hope you are doing okay :hugs: I was just reading an article in a newspaper and thought of you. There is an ethics counselling charity called the St James Ethics Centre where you can discuss ethical dilemmas anonymously, confidentially and for free. The number is 1800 672 303 :hugs:

[MissMay81]

Hi Ladies, thank you all for your replies, again.

But unfortunately I found my baby had died at an ultrasound a couple of days ago. :(

As sad as it is, I am slightly glad *only slightly* I now don't have to think about or consider terminating as I didn't want to in the first place, even though I thought it would be best had it had the disorder.

Thank you all again for your kind thoughts and comments. I am overwhelmed. It helped me a lot while I was having trouble making a decision.

Thank you all :hugs:

Jo x

[angel_cakesau]

so sad your baby didnt make it maybe bub had something wrong so sorry for your loss and hope in the future if you decide to try again that it all works out for you hun chin up :) xoxo:hugs::hugs::hugs:

[kiki07]

Oh honey, i am sorry you have lost your bub. You might still find talking to a genetic counsellor at this time helps you. Take the time to heal.

When you are ready to start a family, there are options to have a child that will not have HD that don't involve terminating an affected bub. It is known as PGD IVF (pre-implantation genetic diagnosis). The genetic counsellor can give you details.

[julietv8]

I'm so sorry for your loss. :hugs: