I have a life threatening disease

Cherish - posted on 02/26/2011 ( 14 moms have responded )

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MY mom passed from Huntington and as did my grandma my uncle and great uncle. There is a 50/50 chance that anyone on my moms side of the family will get it.And I knew this. when I was 19 I got pregnant with my beautiful 2 and a half year old daughter mystique. I know I should have probably should have gotten tested before I decided to get pregnant, but I was terrified to know. Because once you know that you know you only have a short time to live and who wants to watch as there clock ticks by. And it makes me very sad to know now that my daughter will have to watch me die while she watches. Huntington is a very horrible brain disorder. At the end my mom was on feeding tubes on oxygen couldn't walk talk or do anything for herself. She passed because she kept on ripping her feeding tubes out.At the end she only weighed 80 pounds.She was only 38 and my little bros were only 9 and 11 when she passed.And it kills me knowing my daughter will have to suffer by watching me suffer. And because I have it theres a 50/50 chance that she might have it as well.And it would kill me if I gave it to her

And so my question is would you get tested before you decided to have a baby

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Mrs. - posted on 02/26/2011

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This is a hard one, the most difficult I think. I've had to deal with my own non-fatal chronic diseases for years and never thought I was going to have children, even if the docs turned out wrong about my barrenness, because I didn't want to pass it on to a child. So, I could say I understand but I don't quite because suffering for an unlimited amount of time is not the same as a limited time and then leaving too soon.

That being said, we never know how long we have here. I know it's a cliche but is something my chronic disease councillors told me to remember. There are many wonderful lives that have been lived that have been shorter than average.

One of the things that touched me the most when my ex of 8 years, who nursed me through the worst times, and I broke up was something he said. He said that he would have never appreciated his health or life as much as he did after knowing me. He said I made him never able to take his good health for granted - permanently.

Your life, your mother's life and your child's life are of as much influence and value to the people you encounter as those without fatal diseases - sometimes more because of the impact of your experiences.

I doubt you blame your own mother for bringing you into the world....I doubt your child will have those feelings either.

So, my answer is - I guess I would get tested because I'd rather know about my health and prolong it by any means medically that I could. However, I don't know if it would stop me from having a child...because that's my life experience and in your child's lifetime, maybe even yours, there is a chance that this horrible disease will be managed and/or cured.

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I probably wouldn't have gotten the testing done until after my child was born. I have always had this need to have at least 1 child after that i would be getting the testing done so i know for sure and can start planning for the future. I would also like to know so that if i did have it i could put in 200% to living life and showing my daughter what a beautiful world it can be.

Sandra - posted on 02/27/2011

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I woul get tested now being over 30, but am not sure if I would have done it in my 20s!
I can for sure say that because my mother, grandmother and cousin all had breast cancer and my mother refused to have the test done to see if she carrys the gene. And because of that I can not get it tested. I would want to know for myself, because I am one that likes to push stuff like that to the side and knowing I had it would hopefully make me more careful and even responsible!
I hope you will find the strengh to enjoy the time you have. On the "bright side" you can make arrangements for after your time is up! You can prepare your daughter and maybe even pick someone to help her deal with all that when the time is here! God bless you!

Iridescent - posted on 02/27/2011

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I don't know. Getting tested gives you an outlook for your life, but it also takes away possibilities. You live different before knowing something like this than you do after.

You may have passed this to your baby, yes. And it's horribly sad that she will likely go through the same thing you did, watching the end of your mother's life. But you also gave your baby life! She would not be alive now otherwise. And maybe she doesn't have it; maybe she will help find a cure for it. Who knows? This is a loss of quite a bit, but not of hope. You value your daughter and I'm sure will do more with her than many parents ever do, and you're not about to take your relationship for granted.

[deleted account]

I don't think I would want to know, but I can't say for sure. I'm so sorry you have to deal w/ this. :(

Tara - posted on 02/27/2011

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I'm sorry for your loss and for your diagnosis, I probably would have been tested and opted not to have children if i tested positive. But that is neither here nor there for you, you need to be there for your child through this as much as possible, you need to prepare her as your illness progresses and you need to help her process her feelings. I would start with some counselling for both her and yourself, to talk about your fears, for her to talk about her feelings etc.
Good Luck and maybe she will not carry this gene, maybe she will be luckier than you that way. And if she does, maybe just maybe science will find a cure or a management system before she gets ill.

Queen - posted on 02/27/2011

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I prob wouldn't because some scarey things we rather not know so as humans we PUT OFF finding out. I have been dealing with teeth probs cuz I've been affraid to go to the dentist (i know not the same thing). We all have our fears and sometimes its easier to not know if our fears are real or not. Don't feel guilty about waiting but do make sure your daughter gets reguarly tested for it. (Id say once a year) Make sure you have things set up as far as who will be your daughters care takers in the event of your death. Now that you know you need to spend as much time with her as possible and make all the important arrangements to ensure she has a good life. God Bless you and I will keep you in my prayers.

Bonnie - posted on 02/27/2011

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Yes, I likely would get tested before having a baby. It has always been my dream to have kids though, so I would probably have kids anyway. I know it sounds kind of selfish, but life is always a risk with a lot of what we do. I don't feel anyone should just stop living and do what they want because of something potentially happening.

[deleted account]

Its a very personal decision i feel Cherish.No way of going about it is wrong i also feel.I am so sorry you have to deal with this.Your daughter is a gift and will love you forever and i dont think she could ever feel bad about you giving her life and choosing not to be tested.I can hear from your post how much you loved your mother and i feel your daughter will feel that towards you no matter what.

Louise - posted on 02/27/2011

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I think I would of decided to be tested because there is a chance you do not have this disease. Then you would of waited your whole life waiting for the worst to happen. I think you have been through hell watching your mum die and the thought that you could be facing the same must be over bearing. Wouldn't you like to know so that you can put things in place if the worst is diagnosed. you have your daughter so it is to late for the decision to not have children. I think if I were in your shoes I would have my daughter tested to so that you can prepare her for the future or live a worry free life. No point on looking back now you have to deal with the future so meet it head on. I send a big hug for you and your daughter and hope that you get a negative result so that you can live your life worry free.

Nikki - posted on 02/26/2011

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I am very sorry for what you have been through, life can be sad sometimes. My first reaction is to say no I wouldn't get tested, because even without a life threatening disease there are no guarantees in life, I could be hit by a bus tomorrow. Anything could happen and I wouldn't want to restrict my life because of something that could be. The medical world has come so far in even the past 10 years, who's to say there won't be treatments or even a cure. Just because you are given a terminal illness doesn't mean you should start living like you are already dead.

Sharon - posted on 02/26/2011

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Yes I would get tested BEFORE having a baby.

No I would not have a baby if I carried the gene. OR depending on the disease I'd have selective egg harvesting/embryo harvesting done.

♏*PHOENIX*♏ - posted on 02/26/2011

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I can understand how you feel,
Cancer runs remapped in my family on my moms side and she has been battling it for almost 10years, out of me and my 3sisters the odds of one of us getting cancer is great, and if not us then one of our children.

Sorry about your mother

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