Ethical poll: Having kids with a genetic disorder

[Deleted]

I started watching a documentary about different families with Huntington's Disease. HD is a neurodegenerative disease that affects mood and behavior as well as coordination and gait. Patients generally decline to having dementia and can't take care of themselves and eventually pass a few years later. It's dominant, so if you have it, you have a 50% chance of passing it on to your kids. In addition, symptoms usually start to begin earlier and earlier as generations go on. So if your dad had symptoms at 45, you might get symptoms at 35 and so forth. 

A lot of family's don't know it runs in their family because symptoms don't manifest until about 35-45 years old, so they've already had kids and can't prevent passing it on. 

However, 1 of the families in this documentary knew the diagnosis. The father was starting to have symptoms. They decided to have kids. They had 1 boy and twin girls. The little boy got diagnosed with HD at 5 He eventually passed away a few years later, the dad with HD is still living, but symptoms are progressing. The mom is worried about 1 of the twin daughters because she has similar features that the dad and son that passed away had All the while she's taking care of her husband who isn't the same anymore and has already lost 1 son. So sad.

Anyway, I was surprised that they didn't think about having kids another route knowing the HD diagnosis and it's 50% chance of passing it on (At least that's what she said in the documentary, they wanted to just live their life and took the risk of having kids the "traditional" way). I can't judge since I've never been in the situation, but what are other people's thoughts in regards to Huntington's Disease specifically? My initial reaction is that if I were faced with that situation I would want to adopt or sperm donor or something else, but who knows. Such a devastating disease. 

[EmilieMadison]

I would adopt, or use a sperm/egg donor. I would not have a biological child if I knew that either my spouse or I had Huntingtons. No fucking way.

[wambam]

I would not do this.

[W.T.Faulkner]

If I had the means to adopt or to find a sperm donor, I would.

Those options are so prohibitively expensive for so many people, though.

[MWOS]

are you asking if someone would have kids with any genetic disorder or specifically Huntingtons?

never mind, it doesn't matter. this thread is just gonna end with me smashing my computer, so I'll just peace out now.

[fryjack2]

I've taken care of two kids with HD. Both boys in their late teens. It is an awful disease.

Would having children without some kind of medical intervention be something I would do? No. But I don't know their circumstances.

Maybe finances and time (might have been faster to have children on their own and they wanted the dad to experience parenthood as much as possible) were a factor. Maybe they are half glass full type of people and thought a 50% chance of a healthy baby was a good percentage.

[Deleted]

I think this is a hard thing for me to really judge or understand since I don't have kids and don't particularly want them. To me, it seems pretty simple to say "I'd just adopt or use a donor!" because I really can't identify with the desire to have biological kids.

I can't (personally) imagine choosing to have a 50% chance my kid would have a terrible disease and/or die though. I can barely handle the concept that my dogs will die one day, let alone my actual child. How awful.

[Deleted]

Mar 5, 2015 9:48:57 GMT -5 W.T.Faulkner said:

If I had the means to adopt or fo find a sperm donor, I would.

Those options are so prohibitively expensive for so many people, though.

That's a good point. 
I've always been interested in domestic adoption or foster to adoption, but never looked in to the cost.

I also have no clue how much it costs to get a sperm donor or the cost of the whole process. 

Definitely a complicated issue. 

[Deleted]

I would not, for selfish reasons. I would not set myself up to have a scenario where there's a 50% chance I would watch my child suffer and die.

ETA: I am not judging the parents who do have them, it's just not a choice I would make.

[hereigo]

Mar 5, 2015 9:47:14 GMT -5 EmilieMadison said:

I would adopt, or use a sperm/egg donor. I would not have a biological child if I knew that either my spouse or I had Huntingtons. No fucking way.

This.

[thinkofthesoldiers]

Mar 5, 2015 9:48:57 GMT -5 W.T.Faulkner said:

If I had the means to adopt or fo find a sperm donor, I would.

Those options are so prohibitively expensive for so many people, though.

But is it any less expensive or emotionally trying than watching your kid die?

[So_Fetch]

Huntingtons is such a scary disease. I think some people just ignore the lingering thought that they may carry it. They don't want to know and they don't want to deal with it. At least, that's my experience. It's hard because you walk around in fear when you're reminded, but there's also nothing you can really do about it. And that denial runs deep, affecting your ability to make a concious decision as to whether or not you have children.

[Deleted]

Mar 5, 2015 9:50:05 GMT -5 MWOS said:

are you asking if someone would have kids with any genetic disorder or specifically Huntingtons?

never mind, it doesn't matter. this thread is just gonna end with me smashing my computer, so I'll just peace out now.

Huntington's Disease. I was just wondering people's thoughts on the topic if they had the disease or their spouse had the disease and they wanted to have kids. 

[meganew]

That poor baby. No way would I choose to throw caution to the wind so I could experience something the "traditional" way. That seems to be placing a lot of weight on what you want and not what's best for your future kids.

[Captain Serious]

I would seriously reconsider if I wanted kids at all, of the prognoses was that I (or my spouse) would likely end up as a single parent. If, after seriously giving thought to whatever kinds of supports we had in place, we decided to have children anyway, there's no way in the world Is have 100% our biological children. There are just so many other options.

[Deleted]

Mar 5, 2015 9:50:30 GMT -5 fryjack2 said:

I've taken care of two kids with HD. Both boys in their late teens. It is an awful disease.

Would having children without some kind of medical intervention be something I would do? No. But I don't know their circumstances.

Maybe finances and time (might have been faster to have children on their own and they wanted the dad to experience parenthood as much as possible) were a factor. Maybe they are half glass full type of people and thought a 50% chance of a healthy baby was a good percentage.

That's so sad I'm sure it was an emotionally difficult job to be the care taker. 

I've only had an experience with adults with HD.  But watching the documentary with the preschool aged boy with it, made it even more sad, put it more in perspective for me. 

[fryjack2]

Every child that is born is going to die at some point. I would want the child I birth to have the best chance at living to be a senior citizen.

I don't think I personally could chance the odds with something like HD. Another genetic disease? Probably.

[Elsa]

If I knowingly carried a gene that gave me a 50% chance of having a child that would die young, I would choose another way of having a family. I don't know much about HD though- are child deaths common?
It would probably also give me pause if there was a 50% chance that my grown son or daughter would have HD. And tbh I would prob choose a different way to start a family.

But we have those means. I don't know how I feel about someone who wants a family, doesn't have the means to choose to do it in an alternative way. It's easy to say "well just don't have a family". But as someone who has spent a fortune on fertility treatments and is wanting another child, I understand that hole of not feeling like your family is complete.

[daisybuchannan]

One of my H's best friend from childhood's mom died of the disease. She and her husband had 4 (3 boys 1 girl) kids (my H's friend is one of them). None have been tested, but they are all in their early 30's to early 40's. One of the brothers started showing symptoms last year and was recently diagnosed. He is the only sibling without children. My H's friend has three, sister has 3, and the other brother has 2.

I'll be honest, I was surprised when my H told me that none of the siblings were tested before having their own biological children.

[Captain Serious]

Mar 5, 2015 9:51:15 GMT -5 @wandering said:

Mar 5, 2015 9:48:57 GMT -5 W.T.Faulkner said:

If I had the means to adopt or fo find a sperm donor, I would.

Those options are so prohibitively expensive for so many people, though.

That's a good point. 
I've always been interested in domestic adoption or foster to adoption, but never looked in to the cost.

I also have no clue how much it costs to get a sperm donor or the cost of the whole process. 

Definitely a complicated issue. 

I'm a firm believer that there's a way to adopt for any safe family that seriously wishes to adopt. Not all kinds of adoption are expensive, and while adoption comes with its own brand of difficulties not common in biological parenthood, it is also a wonderful way of forming a family.

[W.T.Faulkner]

Mar 5, 2015 9:51:35 GMT -5 thinkofthesoldiers said:

Mar 5, 2015 9:48:57 GMT -5 W.T.Faulkner said:

If I had the means to adopt or fo find a sperm donor, I would.

Those options are so prohibitively expensive for so many people, though.

But is it any less expensive or emotionally trying than watching your kid die?

I can't even begin to understand what must be going through the mind of parents with this dilemma. If it were me I'd seek alternative options or forgo having children at all, but I'm not faced with the idea of early dementia and death in real life, just in this question. The family's thought process might be different; maybe they're religious, etc. 

[stellas]

I think I would adopt. Losing a child would be devastating.

[hopecounts]

We used Donor Eggs so I would absolutely opt for donor sperm/egg or adoption in that situation.
That said donor conception is not cheap and neither is adoption.
donor sperm is less expensive then donor eggs but neither is cheap, all of these options can run $12,000+ depending on the details.

[Deleted]

Mar 5, 2015 9:56:15 GMT -5 Elsa said:

If I knowingly carried a gene that gave me a 50% chance of having a child that would die young, I would choose another way of having a family. I don't know much about HD though- are child deaths common?
It would probably also give me pause if there was a 50% chance that my grown son or daughter would have HD. And tbh I would prob choose a different way to start a family.

But we have those means. I don't know how I feel about someone who wants a family, doesn't have the means to choose to do it in an alternative way. It's easy to say "well just don't have a family". But as someone who has spent a fortune on fertility treatments and is wanting another child, I understand that hole of not feeling like your family is complete.

I didn't think child deaths were common, but like I said above it is common for symptoms to start showing earlier and earlier as generations progress. However, I don't how common it is for it to skip to affecting toddlers. 

Obviously it makes sense evolutionarily speaking, but ugh, so sad. 

[shopgirl07]

No, I would not have biological children in this case. People with Huntington's suffer. No way I would throw caution to the wind.

[Captain Serious]

I know I'm the abnormality here, but if I'm going to parent a child with severe special needs, I prefer that child to be one that already exists and needs a family, rather than to create a child that may have those needs. I know there are other people who feel the strong need to procreate; I never did. I just wanted to parent.

[ax2]

.

[rugbywife]

Mar 5, 2015 9:49:08 GMT -5 TR said:

Isn't there something they can do to test the embryos when there's a genetic disorder? I guess that might be controversial and/or cost prohibitive for some people.

If I couldn't do that and had that kind of disorder, I would adopt or use a donor for whoever has the gene. No way would I knowingly take a 50% chance with something tht serious.

Yes, let's just say the cheque that was signed for the whole procedure, with no guarantees of anything (as is the way with IVF) was $26k.  *not my situation but someone I know well.

[Deleted]

Big hugs, ax2. You are very brave.

[underwaterrhymes]

This is a touchy subject for me.

I have a genetic disorder - Neurofibromatosis 1. It's dominant and I only discovered I have it 3 years ago due to self-diagnosis that was confirmed both with a clinical examination by a leading specialist and a blood test.

I'm the mildest case my doctor has ever seen and fortunately have none of the worst symptoms, including brain and spinal tumors, skin tumors, Lisch nodules, and - in some cases - cancer. I only have cafe au lait spots and inguinal and axillary freckling.

I got pregnant with K inadvertently and was incredibly anxious that he would have it, but although we are not certain as he's not been tested, he is symptom-free and appears not to have it. Eventually we'll do a blood test to confirm, but we're not in a rush.

This pregnancy was planned. We went back and forth over whether we wanted to adopt, do IVF / PGD, or take our chances and ultimately landed on the last one. We are older (I'm 40 and H is 38), and already have debt we're trying to pay off so the first two weren't financially feasible for us right now.

I'm comfortable with our decision. Although the disorder I have is variable and there is no guarantee that our child will be as mild as I am if he does have it, this is not generally a life-threatening disease. Additionally, the only other known family with my genetic misspelling only had cafe au laits, too. This might be irrational, but I'm hopeful that this means that there are many more people with NF-1 who are never diagnosed because there are certain misspellings that lead to milder presentations.

I do think that had my genetic disorder been one that IS life-threatening, we probably would have gone the IVF / PGD or adoption route, but I would never judge a family who didn't make that same decision.