FALS Dilemma: should I even try to get pregnant?

[wishingonwind]

Hi everyone,

I'm new here and am posting because I am facing what feels like the most agonizing dilemma I've ever known. This seems like a wonderful support group and an appropriate group to turn to for feedback and thoughts from folks who may understand my dilemma (all too well, unfortunately). Sorry for the length of this message, but I want to lay it out fully for any of you who feel moved to respond.

My husband's family has a history of ALS that indicates FALS. We have one darling child who was born before we knew the implications of the disease (that my husband has a 50/50 chance of developing ALS, and that if he does carry the gene our child/ren are facing the same predicament). For a couple of years we've really, really want to have another child, and we've been trying to get pregnant again, off and on, without success yet. A few months ago, I learned the frightening implications of this disease, however, and now wonder if it's the right thing to do.

On the one hand, I'm terrified by the high likelihood that our child/ren will lose their father young, which seems to me like a serious tragedy, no matter how upbeat we try to frame it (we got to spend this time with him, we really enjoyed the time together, everyone passes, it's natural, etc.). That strikes me as an exceptionally traumatic experience for a young person to go through. AND, if our children do lose their father, then they too face the 50/50 odds of a much shorter life than average. One voice in my head says it's morally wrong to subject another human knowingly to those odds (for me-- not to morally judge anyone else), and that I might never forgive myself if I had another child now and all of this happened.

On the other hand, we love each other tremendously and have this overwhelming desire to help create another life together. We love our precious three year old more than words could ever say, and there is so much joy in our lives together. We want to expand this, build on it. We have so much love in our hearts for this potential person, and want her/him in our lives! We also think that in the forty-fifty years it would take for our child/ren to get the disease (average), a cure is not unlikely to be discovered, or better treatments anyway. So even if my husband does carry the gene, and we lose him, I have hope that it wouldn't be a sentence to early death. My husband doesn't have the same misgivings. He wants another child, thinks nothing in life is certain anyway, and doesn't dread the possibilities like I do. Most of the handful of friends I've spoken to think I should probably do it. I don't to live my life in and make my decisions out of fear. And if my husband doesn't get ALS (an nothing else gets him early), then I might never forgive myself for NOT having another child...

I don't think there's a right or wrong answer, and I'm torn both directions in a serious way. Even counseling sessions didn't get me closer to deciding. But I need to make a decision that's right for me and my family. And I need to do it quick, since I'm forty and feel like I don't have a month to wait if I decide to go through with it. I am hoping that others of you who have faced this decision, or thought about it or otherwise have insight, can post about that process and your thoughts. I would be very grateful.

Thanks so much for your support to folks struggling with this illness!

[wishingonwind]

Hi again,

One more thing: we've decided not to do genetic testing, because the tests available are inconclusive for most people w/FALS (only catch about 20% of carriers, those with the SOD1 mutation). We're also concerned about what testing might mean for our insurance...

Thanks for reading!

[wishingonwind]

Annemarie,

So sorry to hear about your situation. I hope you find some relief from the sleeplessness and anxiety you're experiencing!

In answer to your question about family history. My husband's father, grandfather, and great uncle, appear to have died from ALS, plus a great aunt with suspicious neurological disease before they knew much about ALS. We haven't gotten many details because my husband's father's family was mostly not a part of his life, and now his grandmother has dimentia and can't give us the history. We're pretty certain of the diagnosis though.

Thanks for your post!

[jimercat]

Pretend you did not KNOW!!!

But, since you do, you have to decide how strong you are. Can you take care of or do you have the resources to take care of two children while your husband has ALS and then can you take care of a child or two that has/have ALS? Of course that would be worse case scenario.

Look, everyday people are faced with tragedy in their lives. Some come through better for it and some don't. Which are you? You know in your heart.

We adopted our son from a known addict, but it did not stop us. We did not know what would be in store for us after he was born, nor did we care. We just knew that we were lucky enough to have an opportunity to provide a loving home to someone that probably would never make it. He was born without complications, but had neurosurgery at 3 months, we made it through. He is now a wonderful seven year old full of life and laughter.

To make a decision based on what MIGHT happen, well we would have never adopted our son. Our lives would not be as blessed as they are now, even with ALS!!!

So: PRETEND YOU DID NOT KNOW...

(no offense meant jmho)

[patricia1]

Pretending you dont know in MY opinion is selfish. ALS is not nor can it be compared to a child with a parent with drug addiction Until you walk in someones shoe with ALS you wouldnt want anyone you love to be predisposed to ALS. There are children waiting everyday to be adopted and you both sound like you will be wonderful parents. Hopefully your first child will continue to remain healty But to try for a baby Knowing he or she may end up with ALS an UNCUREABLE AND DEADLY disease would be irrisonsible. SOrry if thats not what everyone want to hear . And my God bless your child and husband and keep them free of ALS . Pat

[jimercat]

Pat, you have completely missed my point!


Yes ALS should not be wished upon anyone. But FALS is not a certainty. Should you deny someone a life that they may find perfectly acceptable and that in the future may be able to live well beyond our scope of knowledge at this time. Sorry I offended anyone.

Hanging a decision on what Might happen would limit a lot on what this family might have in the future.

Again, sorry if I offended.

And by the way yes there are thousands of children out there waiting to be adopted, but how many are actually adopted? The ones that have problems, that come from druggies, that have emotional or physical problems??? No comparison?

I gotta go get my son from school. check you later.

Please anyone else want to chime in on my response? I'd like to see the error of my ways on this.

As I stated in my first post no offense was intended.

[wishingonwind]

Thanks everyone for responding so far. I just want to respond to to jimercat to say that you did not offend me in the least. I asked people to respond to my post if moved, and your post seemed honest and given in a spirit of helpfulness and kindness.

[liz]

I'm glad my parents had me and that I have this life even though I got ALS at 42.

Liz

[patricia1]

I'm glad my parents had me and that I have this life even though I got ALS at 42.

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

[jean]

Everyone is going to feel differently when confronted with the choice of bearing a child who might develop ALS. I know that I couldn't do it , as I would find it difficult to watch a child of mine suffering a disease like ALS and with odds of 50/50 , the chance would be too strong for me to go ahead. It is an awful position to be in and you have a very difficult decision to make. Unforunately , we can express our opinions , but you are the only person to make the final choice. Whatever you decide , I wish you all the best.
Jean

[jimercat]

Yes jean I agree and that was what was intended in my first post. only she knows in her own heart. I've been to the children's hospital where the kids there are already quads and helpless. Yet their parents are steadfast in their care. Yes it is a heavy, heavy burden. But when you talk to the parents they light up about their child, like nothing in the world is wrong. And the children...they are happy to be there. The other parents were so supportive.

Perhaps I should not have responded as my PAL does not have FAL that we know of. I just know what I have seen with my own eyes. And what I feel for my own son. He could've been deformed, mentally retarded, going thru withdrawals I would've still taken him to my heart. He almost died at 3 months because of something the birthmother did to try to abort on her own during the pregnancy. He survived. And if he would've been damaged mentally, so be it. I would deal.

What I am trying to say is I knew beforehand that this baby could have all sorts of possible problems, because I knew about the birthmothers problems. But we chose to go for it.

Ok I keep getting interrupted. I hope I make sense on this issue.

Wishingonwind...I know I do not stand in your shoes. Look into your heart.

[jean]

Jimercat , I admire your care , compassion and love , but being confronted with a child already born with problems is not the same as deciding to bring one into the world who you know has a 50% chance of condeming to an awful disease. i don't think I could live with the idea that I had knowingly chosen to take the chance.I also think there is the opportunity to stop a familial disease in its tracks , by choosing not to have the child. it's the hardest thing in the world to do , but if i felt it would stop future generations from getting the disease , it is a sacrifice worth making . But , as i said before , what I would do is my own choice and i know we all have different views, which is why our advice has to be limited and the final decision has to be right for the person having to make it! Wishingon wind, you have my deepest sympathy in having to make such a decision.
Jean

[wishingonwind]

Thanks again, all, for the honest feedback and I look forward to hearing more folks weigh in on this difficult dilemma. I do want to clarify that at this point, our children only have a 25% chance of getting als, since it is unknown if my husband carries the gene. While this is still very high, I have to say it seems very different for me than 50% (e.g., I would stress more about my son if I knew his risk was 50/50 than I do now, since I can say he's three times more likely NOT to get it than get it, which helps since I'm a worrier and there's nothing I can do about it now anyway). And again, isn't very likely that a cure or effective treatments will come down the pike fairly soon? Maybe I'm just looking for justification to go ahead with this very dearly held plan that we've had for years...

[georgia]

Might get cancer, Parkinsons, MS or something else but unless we think of letting a family tree stop because of MIGHTS go ahead and try only God knows for sure. Would you have wanted your husband not to be born because his father and grandfather had ALS?

[Lorie]

Did one of your husband's parents have ALS? How many people in his family have had it?

I don't really know which is worse, knowing you have a Familial History with ALS or Sporatic. My brother is Sporatic. If my brother would have had children they would have been at a 50/50 odd to. But I guess children wasn't in the plans for him. But I can tell you, I think he wishes he did. He didn't know he was going to get this disease. Like All.


Lorie

[jimercat]

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]

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]

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]

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.

[wishingonwind]

Hboyajian,

Thanks for the suggestion of genetic testing. As I said in my earlier post, the test only identifies 20% of FALS cases, so a negative would by no means allay our fears -- and it would almost certainly make my husband uninsurable. That's why for now we aren't going to take it... It's quite unreliable.

I think for now our focus needs to be on preparing for and accepting that my husband may get this disease in the not-too-distant future, hoping to be spared, and enjoying our time together!

take care.

[hboyajian]

Dear Wishing, I do apologize. Somehow I didn't catch that statistic about the test for FALS. You are dealing with these difficult issues in a very thoughtful manner, and you are doing the best you can to give your family all your love now while you are together. I respect that. Holly

[Saubier]

But this contradicts what I thought was true, that FALS affects males and females about equally.

The SOD1 gene is on the Y chromosome. Women have two of them and the other one takes over for the defective one. Men only have one, so they have no fallback position.

Pappy

[John1]

...I think for now our focus needs to be on preparing for and accepting that my husband may get this disease in the not-too-distant future, hoping to be spared, and enjoying our time together!

take care.Dear Wishing,

Nothing presently is known to slow down the disease once started, with the possible exception of Rilutek. But a very large study of Vitamin E usage showed a dramatically lower incidence of ALS than among those who who took Vitamin E regularly compared to those who didn't. If I thought I might carry a FALS gene, I would certainly take Vitamin E daily in the hope that it would at least delay the onset, perhaps to a time when there is a real therapeutic.

John

[Peg B]

Hi,

I just want to add my two cents worth. We waited 8 years before deciding it was OK to have a child. The world itself felt threantening. Besides we could think of no good reason to have a kid except we wanted one, OK two or three. We had two girls. I guess one of the deciding factors was we could not control life anyway. My best friend and sister was killed a month after her 22 birthday and 3 months before graduating from college. She was killed by a drunk driver. My 3 other sisters all got cancer. The oldest one died of it 12 years later. Two are still survivors. My mother and all of her sibs (4) died of one form of cancer or another and in two cases, my mom and her sister, each had two different kinds of cancer. My oldest cousin died of cancer like her mom. It runs in the family. I have been diagnosed with ALS but might have MMN. We do not have control over any of this. But I would not change one moment of love for and with my sisters. I would much rather have had them to lose than not to have them at all. All we can do is cherish who we have for as long as we have them. God Bless you in your joy and in your pain. Peace be with you. Peg

[jcarnahan]

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


I wish that this was true, but it is not. Our family has been plagued by FALS. The chance is alot less in girls, but yes, it is quite possible.

[CindyM]

Hello jcarnahan, I see this is your first post. I am glad you decided to join us. I am also sorry that FALS runs in your family. You must have quite a lot of stories to tell and experiences to share! Welcome! Cindy

[jcarnahan]

Thank you cindy. I have been lurking for quite some time. My BIL is the 6th person that we know of on my hubbby's side to develop FALS. He has been rapidly progressing in a very short period of time, he is 33. It is possible that hubby's cousin is also now symptomatic, he is 26 and is going for further evaluation. We have two girls (we did not understand what ALS/FALS was before starting our own family) and therefore we also have alot of concern.

[jean]

Just a comment on FALS. There are various types , but the majority
are not sex-linked, but Autosomal dominant conditions , which means that ALS can occur equally in both sexes. Without knowing 100% that your family has a sex-linked variety, knowing the sex of the unborn child isn't a guarantee of the next generation being spared from possible ALS. Some families have an x-linked form and others have autosomal recessive forms, so there is a mixed bag out there!
jean