FALS Dilemma: should I even try to get pregnant?

[brooksea]

I did not intend for this to be a back and forth.

But to jean--I did not know what I would get (human being-baby) ahead of time.

That is my point.

I only hope "wishing" that you can search your heart for the right answer. you will not find it here. you will find it within yourself.

 

[Al]

Just a random thought here but at 40 doesn't the child have higher odds of having Down's Syndrome than ALS? I am just trying to make the point that we have no idea what will happen down the road. There are risks with any pregnancy. Do what you think is right.!
Not what we think is right or wrong. Just asking the question here makes me think that you might not really want to.
AL.

 

[patricia1]

People at 40 usually get a amino to see if the baby has Downs because they want to know . I guess to make a discision whether to have it or not. And some people choice not to have the amino, So it is your choice and your choice only Go with your heart. It was just my opinion Pat

 

[Tom]

baby

Wishingonwind,
I've been reading all the posts to your questions and I must say that you have a difficult decision ahead of your family. Here's my two cents: I have a 13 year old son, and my wife and I had great difficulty getting him here. After several surgeries on my wife and no luck, we eventually had to go in-vitro. We knew there were possibilities that things could go wrong considering how many chemicals were used, etc., but we were willing to try nonetheless. My son is in the gifted program at school and my absolute joy. Now for the rest of the story: My mother in law was diagnosed with ALS about a year and a half ago, and is in a nursing home. My wife was diagnosed with MS about four years ago, but has been doing very well on Copaxone. Now, even if we'd known about all this before we had our boy, we'd have still done it anyway. I know there is a chance he could come down with a neurological disease based on family history, but that would not have stopped us from having him. Now I don't know whether or not you're church going folks or not, but I will say this. Much, much prayer went in before, during and after we had our boy, and I believe God gave him to us for a reason. I also believe there's a reason why these diseases have struck our family as well. I don't like it one bit, but I accept and trust in God to take us all through this. The Bible says we are not guaranteed tomorrow, and I would imagine that all who read this have had close calls during their lifetimes. So, after saying all this, I guess I might be a little biased considering what it took for us to get our son and seeing how difficult it was for my wife to want a child and not be able to have one. I would hope that if you decide to have another child, that you have one for the possibility of great things in his/her life, that regardless of length, it would be a lifetime filled with love and family. I wish you and your husband the best. From one 40 year old to another. Tom

 

[liz]

I hear you Liz ,but me personally will not intentionally have a baby knowing that baby may grow up and get ALS. Sorry that only my opinion. Pat

No problem, Pat. I think the varied responses here just underscores the complexity of the dilemma faced by folks from backgrounds with familial ALS as well as other serious hereditary diseases.

Liz

 

[patricia1]

Enough with this topic I am done with it Its to contriversal for me I have enough problems of my own.How are your feeling Liz havent heard from you lately I am about the same for 2 weeks Which I am happy about For a minute there I was getting more and more symptoms.I was getting scared..Pat

 

[CindyM]

Not to hijack this thread but I am glad your symptoms have settled down, Pat.

And I want to congratulate us all for having a reasoned and interesting discussion on what is a difficult and emotional topic. At the end of the day, Wishing, you do have to go with your heart, though. We will support you whichever way you decide. Cindy

 

[wishingonwind]

I really appreciate everyone taking the time to read and respond to my post, and your care, thoughtfulness, and support!

To respond to some of your questions/comments:

Re: Al's question about Downs Syndrome. My chances of having a baby with Downs are much lower than ALS, probably about 1-2%. I'm not terribly worried about that level of risk.

Lorie: Yes, my husband's father, grandfather, and great uncle appear to have had ALS.

Pat: I am sorry you are dealing with a lot and I wish you well. Thank you for clarifying your earlier post.

Tom: Thanks for sharing about your own family history, and spiritual strength. It meant a lot.

Cindy, I really appreciate you being explicit about letting me know I could find support here regardless of my decision.

Georgia: you ask an interesting question: of course I wouldn't want my husband to have never been born. And he's told me unequivocally that he is very glad he has gotten to live, like Liz, who posted similarly yesterday. That's part of why he really wants to have a child, because life is such a wonderful gift... And it's part of why my decision is so hard...

Many of you have suggested I look into my heart for the answer, like Jimercat. You are right! But I still value talking with others about this impossible situation who can understand. It's very, very helpful. So thank you again, all of you.

Still open to others' experiences on the topic--especially if you have been faced with this decision.

All the best to all of you. I hope you find much joy and strength, even as you deal with your hardest challenges.

 

[Londoner]

Hello,

Your post has prompted me to write as up till now I have been only a lurker.

Well what can I say? I am one of those people with a 25% chance of having the gene, eg in the same position as a child of yours is or would be.

How has this affected me? In all honesty, I feel immense anger towards my parents for having me despite the fact that like with your first child they were not aware of the familial ALS strain when I was borne. There is not a day that goes by without me worrying about this disease and I feel that it has in many ways ruined my life. I know this probably sounds dramatic and illogical but I am being 100% honest about how I feel and I think honesty is what you asked for?

Obviously I would never go as far as to say I wish I had never been born - I have a lovely partner and a good life - but had I never been born then I would never have know otherwise if you get me? I remember watching my grandmother die of this and feeling terrified (I was very young so it probably seemed even worse to me) and now after the deaths of another two relatives the dread is still there and every muscle twinge sets me off worrying.

This has also been quite damming for the family as a whole as people deal with the knowledge in different ways, therefore, there has been problems between those of us that have wanted to discuss it and those of us that have never uttered a word about it. Gene testing has been even more divisive and no-one has dared yet.

What I would say to you is please do not go ahead and have that child. I guess I am asking you to put yourself in the child's place - at worst he/she would have to watch their father and sibling go through this, all the time knowing that it may be in store for him and that is what is really hard to deal with. I know people look at it from the other angle saying 'well we could get cancer or MS or whatever' but that is not the same as 'knowing' that a deadly disease runs in the family. Also, really that is just asking for justification for having child eg doing what YOU want rather than thinking of the child.

Please understand this is not meant to offend, I know it must sound harsh and you are obviously a thoroughly nice person who is taking in informed opinions from a number of people. Just understand, from one who is in the position that your child would be, it is not something that I would wish on anyone else.

Just as a last point, have you considered adoption?

 

[captwilly]

At the risk of offending....

First let me say thank God that I dont have the delima that you do. Having said that let me make a couple of observations; you and your husband sound like the type of parents any child would be lucky to have, you must ask this question..would I love my child any less if he/she became ill? Can I deny the child life on what may come to pass/ or not? Who knows what the future holds? The life you bring into this world may be the one who finds a cure for this cursed disease.
There is no simple answer to your problem. My advice to youwould be to pray about it and then follow your heart. Hokey as it may sound to some, prayer does help, you may not always get what you pray for but you will always be heard.
I will ask for guidance on your behalf at the same I thank God for sparing me the problem that you have.
Remember that God will not require more of you than you and he can handle, and I do believe he grades on a curve.
Whatever choice you make I know if you listen to your heart it will be right for you, God bless you both.....wm

 

[wishingonwind]

Hi again everyone,

Thanks to the last two posters for your varying perspectives on my dilemma. It's been a really hard few days since posting my original post. This whole thing is so terrifying to me. I've decided not to try to get pregnant. I want to make it clear that I don't think this is the universal "right" answer to the question. I really think it's a personal choice and that no one has a right to judge another morally for having children in my situation. In fact, I admire people with the faith and courage to make a different choice. I think there's something really wonderful about trusting that whatever happens, there will be the strength to endure, that things are likely to turn out okay, that life is a gift and worth living even with very challenging circumstances.

But I have looked inside my heart, and thought about it a lot, and I have decided that the 50/50 risk we would be taking is just too big for me. I'm terrified of losing my husband in about ten years. It just makes me so sad to think that our time together will be so short (compared to the average lifespan of 77 yrs). I'm in tears as I write because I can't even imagine living without him. But as terrifying as that prospect is I'm even more worried my son losing his father as a child. I adore this person with every, single fiber of my being. I'm in a lot of pain just thinking about my son taking such a huge loss. Perhaps worst of all, if dad does have the gene, then my son faces a 50/50 chance. I can't even imagine telling him this. And given that I started late as a parent, I might not be around to know if he's okay, or to care for him if he's not. It's so hard to accept this reality! I'm not there yet. I also thought about how on earth I would care for two children if their father died, both financially and in terms of time and energy (a reason not to adopt). It seems like it would be much more manageable caring for one. And finally, gearing up for the possibility that my husband does carry the gene, it seems wise to put all our love and energy into the child we have, so that he has more inner resources to be strong in the event of this unimaginable tragedy. As it is we're spread pretty thin with work, school, and childcare. Having another child now would definitely impact the attention he gets (another reason not to adopt)

All these factors made us to decide to give up trying. I feel really, really down today. This is by far the hardest thing I've ever dealt with.

Best wishes to all of you.

 

[Saubier]

Dear Wishing,

Only males get FALS, females are carriers. You could get the book, Choosing the Sex of Your Baby, to assure you have a girl. (It works if you follow directions).

If you both want children, have girls. They will have difficult choices one day, but maybe there will be a cure then.

Pappy

 

[wishingonwind]

Saubier,

Thanks for your post. But this contradicts what I thought was true, that FALS affects males and females about equally. I'm fairly certain I've read posts on this board by women who inherited it and developed ALS. Others of you who know: is this correct?

 

[Jamiet]

I'm happy i got to live

Sorry,

I'm happy i got to live, no matter what i have. I've made two beautiful children and that was worth it, no matter what, they will enjoy life, no matter if it's 20, 30 40 or 80 years. Mine have a risk of problems, we all do.

Yours might have a higher risk. If i were you, i would get an expert opinion. If it's familial, you may be able to get tested?

Either way, i will support your decision, we are here for you no matter what, thick and thin.

 

[hboyajian]

I am going to speak to another part of this issue. It appears that part of the problem, the agony you and your husband are going through, is the not knowing and anxiety about what could happen in the future, to your husband, to you, and to the child you already have. At this point, your husband does not have ALS. Would it help you both if he got the genetic testing done? You have a 50 % chance of all your fears being relieved. If in fact he does have the ALS gene, it may manifest earlier or much later in his life. Would the worry about when be too much to bear. Maybe it would. I don't know. If you do choose to do this, be sure to get really good health insurance and life insurance beforehand.