If you or someone close in your family had a debilitating genetic disorder...

[momeg]

...that you were fairly certain of passing onto your child, would you still choose to have children naturally?

[Viola]

Hard to say. My husband is a carrier for CF, which we found out when we both got tested. I didn't test positive for the most common mutation, which made my chances of having a child with CF like 1 in 980 or something like that. If I had turned out to be a carrier, I'm not sure what we would have done.

[Jessy1019]

It would depend. If it was something we could test for in utero, then we would have done that. Even without a family history, we planned to abort if the fetus showed any abnormalities, so I would have no problem having an abortion -- or two or three -- if that was what it took to have a healthy baby. If there was no way to test before birth and a high chance that the child would have a debilitating disorder, we would probably have chosen not to have children.

[VisionaryMom]

We have a genetic disorder that runs in my family. The chances of my child getting it was small, so it didn't stop us from having a baby. It's something you can see with an ultrasound, so we had extras done without any problems. If I thought my child were likely to have it, then there were other testing options I'd probably have chosen.

[angie7]

I have a very serious, life-threatning problem that they are not sure is genetic but believe it is and we chose to have children. I did a ton of research regarding what I have and children (not much out there since what I have is very rare) and we decided to take the risk. No one else in my family is known to have it although I wonder about my mom sometimes. There is no way to test for this in utero or even a genetic screening test. Now we just sit back and hope that our kids are okay.

I think it is a very personal decision, one that no one should be judged on until you are in their shoes.

[thebarkingbird]

that depends on a few things. autism , heavy duity mental illness, and juivinial RA run in my family. i never thought twice about having kids or having a second when DS was diagnosed with autism. all of those things exist on a spectrum and can either make self care impossible or merely make life a little rough from time to time.

if what i carried were a death sentience (short life painful death absent an act of god) i would not choose to conceive and that would be very very hard for me.

if i did not have the family or financial resources for needed therapy and help in care i might not choose to have children if there were a high likelihood of a child needing lifelong care or constant medical attention.

i do not know if i would have the emotional resources to parent a severely mentally retarded child so i would likely choos not to concieve if that wew a factor.

i have had a (home done herbal) abortion and a miscarriage. they were different experiences. one bummed me out and yet it made me feel free. when i lost a much hoped for baby, one i planned for and began to bond with i was depressed for much longer it was devastating. i can say almost for certain that i would choose to avoid conception rather than terminate upon test results because that would feel like so many miscarriages i can only imagine the tension and emotion in the months leading up to testing. hoping and then having to decide. i would find that to be simply too much. i would also have to endure those losses without family support. not my primary deterant but it's on the list.

i know it makes perfect sense to lower the odds of having a child w/ needs you may not be able to meet but ANY child can become a SN child in the blink of an eye.

[rightkindofme]

Originally Posted by momeg

...that you were fairly certain of passing onto your child, would you still choose to have children naturally?

My husband has Aspergers, which means we are much more likely to have an autistic child. We discussed very specifically how much care/financial involvement we could handle and decided to risk children.

Something more severe? I don't know. I suspect I wouldn't, but I also don't think this is the sort of decision I can judge someone else for making.

[SleepyMamaBear]

my husband, and his mother have(had for his mom) Marfans, not life threatening, but pretty sure it will be passed on.
his mom also died from Huntingtons Chorea, something that can be genetically passed on.
two of my uncles and now my aunt have MS, which can also potentially be passed on genetically.
we still chose to have our children.
we will cross that bridge when/if we get there.

[littleaugustbaby]

Depending on the disorder, yes I would.

[bri276]

it's a bit different, but I have a chromosome disorder- I am perfectly fine, but because of it, my daughter was born with multiple health issues and developmental delays. nothing severe (IMO), or life threatening, but certainly life-altering and challenging, required two surgeries, requires daily medication injections, various therapies. I didn't know about this before I had her.

I've had to think long and hard about whether or not to try for another "naturally". it's been.....extremely hard to watch my child suffer, to put it mildly. on the other hand, I certainly don't regret having her, and I wouldn't change that if I could. I would die if anything happened to her- but that's exactly the point.

Because I had no idea I was a carrier, I never felt one ounce of guilt. I have heard other parents describe guilt about their children's issues even when it's not genetic, and I can't relate to that at all, thankfully. I've watched her experience pain, and stress, and difficulties with a huge amount of empathy and heartbreak, but zero guilt, because there was no way for me to know I was chancing passing this on. If I had to see and live all I have over the past three years knowing that *I* rolled the dice, I don't know how I would've felt. Maybe regretful, maybe guilty, maybe not. I have very complicated and sometimes conflicting spiritual feelings about all of this, as well.

Basically, I have chosen, for the time, not to roll the dice and we're pursuing other options. But I just don't think there is a right or wrong answer. All I would say is make sure you have a contingency plan for any situation that occurs. Many times, prenatal CVS testing can show a result in the first trimester. There is also sometimes an option of in vitro fertilization using pre-implantation genetic testing on the embryos, or using donated eggs/sperm/embryos. There is a lot to think about. My heart goes out to anyone in this situation.

[momeg]

Thanks for all of the responses.

[angie7]

May I ask the reason you were asking? If you would rather not say on a public board and are dealing with this situation yourself, send me a pm, I'd be more then glad to talk with you about our decision and why we came to it.

[samstress]

if it was "fairly certain" that a "debilitating genetic disorder" was going to be passed on to my child, i probably would choose not to have any biological children. that said, i can't say for sure because i've never been in that position.

[momeg]

Thank you, angie7. This post was actually brought on by some news about a good friend of mine who has a partner with a serious illness that will probably claim her life. They are thinking of having children while she still can. I was just sort of trying to process the information. It's been weighing on my mind, I guess. I truly don't know how I would feel about it if it were me. It is such a heavy issue for so many reasons. Even if the child is healthy, the mother might now be around for very long.

But the desire to have a child is so strong sometimes...I know it was with me.

Thanks for sharing your story with me.

[rightkindofme]

Originally Posted by momeg

Thank you, angie7. This post was actually brought on by some news about a good friend of mine who has a partner with a serious illness that will probably claim her life. They are thinking of having children while she still can. I was just sort of trying to process the information. It's been weighing on my mind, I guess. I truly don't know how I would feel about it if it were me. It is such a heavy issue for so many reasons. Even if the child is healthy, the mother might now be around for very long.

But the desire to have a child is so strong sometimes...I know it was with me.

Thanks for sharing your story with me.

That's really hard. My husband and I have talked about how if we knew one of us was going to die we would want to hurry up the having a child process (uhm, you know... if I weren't already pregnant) because we would want a piece of the person to stay with us. But if it carried a risk that the child would be ill too? I don't know. I'm really sad about their situation and I don't know what I would do.

[AbbieB]

Speaking as a mother of a child with a genetic disorder...

I am statistically more likely to have another child with the same disorder. I think the numbers are something on the order of 1 in 100.

If I decide to have a third child I will do it naturally, after having made the decision that I would be OK to face the possibility of another child with a disability, no matter what that disability might be. It's the same decision I had to make before trying to conceive each of my other children. The only difference this time is I know exactly how painful some of the emotions are when you find out your new baby has something different going on.

There are NO grantees with conception. This has always been true. Two healthy parents does not automatically mean a healthy, genetically typical child. We all risk having a child with a genetic disorder.

This is a very personal question. So complex. There is definitely no right or wrong answer.

[SuzyLee]

Well, my H has NF1, a very common genetic condition (the most common actually, although most people have never heard of it). It can range from never diagnosed to it kills you from the cancer that you get. And there is no way to predict how severe a person will have it.

We had planned to go IVF, because although it is expensive, the cost for one surgery to remove a tumor (which my husband has a mild case and he has already had 2 tumors removed) will easily cost more than the IVF cost. So we figured IVF was not only better for the baby, but better for society's medical bill.

Well, oops, we got pg on our own. We did genetic testing at 12 weeks, thinking we might abort, but in the end even though the baby does have NF, we just couldn't terminate the pg.

We do still plan to do IVF for baby #2, some day (and I have an IUD so there will be no more oopsies)

[angie7]

Originally Posted by momeg

Thank you, angie7. This post was actually brought on by some news about a good friend of mine who has a partner with a serious illness that will probably claim her life. They are thinking of having children while she still can. I was just sort of trying to process the information. It's been weighing on my mind, I guess. I truly don't know how I would feel about it if it were me. It is such a heavy issue for so many reasons. Even if the child is healthy, the mother might now be around for very long.

But the desire to have a child is so strong sometimes...I know it was with me.

Thanks for sharing your story with me.

Thank you for sharing your friend's story. After facing what I have, I can completely understand how your friend feels. Its sorta like "it is better to have loved and lost, then to never have loved at all" This phrase can be used in this situation as well. I was told not to have children of my own b/c the risk of me dying or suffering severe consequences were very great. I was only 24 years old when I was dx. A year later, I just couldnt fathom the fact of no children. I always dreamed of being a mother and my dh and I decided that a family is what we wanted and we were willing to take the risk. I put my life and body on the line for a baby. Who knew we would get pregnant on the first try with TWINS! Pregnancy was rough, they were born early but healthy! I didnt suffer any lasting problems from the pregnancy. These are my last children, I would love to have more, but my health wont allow me to. We didnt do any type of testing on the twins when I was pregnant. We knew they were our babies no matter what was wrong with them. Now we just sit back and wait to see if they missed my possible genetic problems. So far so good

It is a very difficult decision to be in but until you are faced with your own mortality, who knows what you would do. The desire to have a baby is so very strong, even stronger when you're in a position like that. I will keep her in my thoughts.

[Phoenix~Mama]

I think it is something everyone has to decide on their own regarding their own personal comfort levels and that of their partners...

I have fibromyaliga... while not life threatening, it can be quite debilitating some days. Much research shows a high possibility that it can be hereditary. My Grandmother has it, my Mom has it, and I have it... but my two sisters do not.

I told this to my DP after showing him all the literature and a video I have on fibromyalgia and we decided to have children.

I'm living through it... yes sometimes it sucks, and I wouldn't wish the pain on anyone... but I also learned a lot from it and love and value life much differently now than before I became very ill.

We will just raise our children to be flexible and learn that sometimes they need to adapt to whatever God throws there way.

As I said it's not life threatening... so that plays a big part in the decision... but it's still hard knowing my child may have to live in pain as I do. But it's not the end of the world, and honestly I think it makes me a stronger person, and I would hope the best for my child as well.

[Demeter9]

Really depends.

I would be most concerned about disorders that would lead to a short painful life. Or a painful life. And disorders of profound brain dysfunction - not like autism or down syndrome where you really don't know how profound a problem might or might not be.

I have alcoholism and bipolar and depressive disorders in abundance in my family. I did not consider not having children based on that.