Hi guys, I'm Sarah. I'm a 25 year old from New Zealand and I just thought I would share my journey so far.
Grandma was the first known person in our family with HD. Symptomatic at age 65 and died at 79 as a vegetable. Very quick progression for the last 5 years, and a CAG the same as mine and my mothers at 42 repeats. She also lived her life encompassed by alcoholism and mental illness.
Mother took a different route, living a clean healthy lifestyle and has now reached 56 with typical symptoms of old age which is is difficult to associate with HD. And for the most part she appears absolutely fine.
My partner and I naturally conceived 2 1/2 years ago and have a georgeous HD free son. We were lucky. Since then we spent a lot of time trying to extend our family through ivf (pgd) and after a year and a half of being unsuccessful I fell pregnant naturally. I am now 14 weeks with an HD baby CAG 42. Termination is booked for 04/04/14.
This was the most excruciating decision I have ever made and I will forever live with guilt and regret for ruining a life. But it would have been ruined eventually anyway. I couldn't bear to see my mums downfall knowing that my daughter would have to suffer the same fate.
I just want anyone else in my situation to exhaust every effort in conceiving via IVF before following me down this route. Patience is key.

My heart prays for you in what must have been a very difficult decision.

patty c Wrote:
-------------------------------------------------------
> My heart prays for you in what must have been a
> very difficult decision.



Ditto.

Pete

Hi Sarah

Firstly, my sincerest condolences to you and your family. I hope that you are all coping as well as can be expected.

I decided to reply to your post after basically searching the Internet for anything or anyone that could relate to my own story, which is so similar to your own... My father inlaw has Huntington's so when my husband and I decided to start a family we knew we wanted a HD free baby. We made a decision to get pregnant naturally and have the baby tested. At this point my husband didn't know his status so a positive result would diagnose him too. Luckily our baby was negative. Our beautiful son was born 18 months ago and brings us so much joy every day. We fell pregnant again and received results on Friday that the baby is positive, and therefore so is my husband. I am booked in tonight for a D&C. I feel devastated. I want this baby so much as I feel like our family is incomplete and yet I know in my heart that its the right thing to do. (Just to add, it's the right thing for us, whatever options others take need to be right for them. I don't judge and ask not to be judged).

Basically I just wanted to reach out to someone else in my situation. We haven't told anyone else so our only support is each other at the moment. I hope you have a strong support network.

All the best. Take care of yourself.

Molly and Sarah, I am so sorry that things did not work out as you had hoped. I will be thinking about you.

Molly I really feel for you I know how hard that decision is to make. You're so brave.
Tell me how it all went?
Basically, I couldn't go through with the procedure. It has been postponed till this Friday, pending our decision. We are in the process of gaining as much information and insight as possible, and are in contact with opposing sides, the scientific side very for keeping the baby, while the genetic side is very for supporting a decision to terminate. I want this baby, like you, our family is incomplete. I'm starting to believe that any life is better than no life at all, especially with my family's history of very late onset.
I fell like medical technology is progressing at an alarming rate. A cure is a huge 'what if', but then again, so is everything in life.
My partner and I are on different pages at this stage and I will terminate if I don't have his support, as hard as it will be to live with my regret, I couldn't do it without his support.

I wish you all the best Molly and contact me whenever you wish.

Sarah X

Sarah + Molly:

My thoughts are with you both. My husband and I were in a complex spot not dissimilar to yours.

Let me know if either of you need a phone call or a private message.

Last night we terminated the pregnancy. I'm not even sure if I've really processed it yet.... We are coping ok at the moment. We had a long wait in hospital before the procedure, but we kept distracted. I was determined not to cry for fear of not stopping. But as soon as they wheeled me away from my husband I lost it. And as soon as I woke I was distraught. But I feel surprisingly ok today, both physically and emotionally. I feel relief. I do feel guilt. But I am definitely going to be ok.

It is such a tough and complicated decision and I'm not sure if we will ever know if we did the 'right' thing, or if there even is a 'right' thing here.

I will be thinking of you, Sarah, as you make this decision. I went through all the same thoughts you mentioned above.... There are so many things to consider. And I think whatever choice you make there will unfortunately be guilt associated with it. All the best to you and your family.
Please ask if you have any questions about the procedure or recovery, or anything else.

Thanks for sharing this Molly. Very sorry to hear about how things didn't work out how you wished. I feel you made a good decission.

I'm so sorry that you have had to make such difficult decisions. My heart breaks for what you must be going through. I'm praying for you and your family.

I'm proud of you Molly, you're a stronger woman than me. Hope your recovery is going as well as can be expected. And it's true, there can't possibly be a 'right' thing to do in this situation, we can all only go by what is right for us and our families. Any choice we make will be surrounded by negativity by different parties, and everyone has an opinion.

Just an update: my partner and I have made the decision to keep the child. We both felt an intense wave of relief after making this decision and coming to terms with it. It's not going to be a very enjoyable chat somewhere down the line but we are determine to stay strong and united and provide all the support needed. I have always said I'd rather be alive and have HD than not be alive at all, I can only hope my child will feel the same.

Please no negative responses, the decision has already been made.

Sarah

No negativity from me. I'm so happy for you and your husband, Sarah. Congratulations!! I wish you every happiness.

I've had an unfortunate roller coaster of emotions the past few days. A cruel combination of pregnancy hormones and just generally being emotionally wrecked. I'm sure there will be light at the end of the tunnel and I will feel normal again... Hopefully soon....

All the best to you and your family. I have to admit being envious because I want another a baby so much but hopefully my time will come....

Wow, a lot of happy and sad... but they say you can't have one without the other!

I say congratulations to all of you who make these most difficult choices.

Whether you choose to continue or terminate, it is the "right" decision because you made it!

All the best

Talk about difficult decisions......you both had them to make. My heart goes out to both families and I hope you both do well with your decisions. Try to keep in mind the decision has been made and all you need to do now is move forward for the future. Look for the bright spots.

Mike

@Sarahkay25 Congratulations!!! I'm wishing you a happy and healthy nine months!!!! I had my baby naturally knowing that I was HD positive. She is so amazing. My princess is four now. What a blessing. She is the reason I get up in the morning and put a smile on my face. Children are precious.

My father had such guilt when he found out the he was HD positive. He felt that it was all his fault that I was HD positive. But I told him that I have lived my life ( although like with everyone with up's and down's) I don't regret my life. And if the only way that I can have this life is to live with this illness, then I'm hanging on with both hands.

I hope that this special time as you wait for your baby, brings you and your husband even closer together.

I'm so sorry that you've both had very difficult and heartwrenching decisions to make. Molly, my heart goes out to you at this time, and pray for comfort for you

Molly there will be light, that's for sure! I like what 'Mikee' has said here about moving forward for the future. Let your body heal itself keep focused on achieving a happy healthy non HD baby in the future. If IVF is accessible for you I highly recommend going down that route.

Thank you all for your support and well wishes over the past two weeks which has by far been the most mentally exhausting and trying time for my partner and I. It's really very appreciated.

We are looking forward to our first grandchild latter this month. My son has no idea if he has the gene nor the baby of course. We do look forward to seeing him although distance is an issue but we can deal with it. I feel there will be treatment in the not so distant future but it's anyone's guess.

Everyone has decisions to make and their reasons. Keep this in mind as you go forward.

Before this disease I couldn't imagine what it was like for a person disabled by any illness. It's a different story when you have to walk the walk.

Good Luck,

Mike