Genetics and deciding whether to have children

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  • 1 Post By Amneris

The title pretty much says it all. For anyone who knew they were a carrier for a syndrome, disorder or other genetic problem, how did that knowledge affect your decision on whether to have biological children? Did the severity of the problem -- mild, handicapping, treatable, etc. -- push you one way or the other?

Feel free to weigh in with hypotheticals.
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Depends on how 'bad' the syndrome/issue is.
I could never understand folks who take known chances
As for me, I know some, but not all, and decided the risk was worth it.
g/l!
I personally have come to the conclusion that I would not voluntarily choose to raise a "special needs" child whose special needs are severe, or with a serious health condition requiring frequent hospitalization, treatment, etc. Yes, I know my existing kids could get sick or develop an issue or have a condition I don't know about yet. There is always some risk involved with having kids. I guess the risk is acceptable to me that once my ultrasound suggests the child is healthy (and yes, I know ultrasound isn't perfect) I am comfortable birthing it. But if my ultrasound showed a significant defect, or if I knew I or my husband had a substantial risk of passing one on, I personally would seriously consider termination/ not getting pregnant in the first place. I just don't think I could emotionally handle that as well as raise my existing kids.

If I were willing to only have one child, I would be more inclined to have him/her regardless of their health as long as they wouldn't suffer, but once I had a healthy child here I knew I would not want one who was not healthy because it would steal from my son too much.

I think if in the worst-case scenario a child could still have a decent quality of life and communicate and participate in family activities and go to school and could someday live independently (or independently with support) and would not suffer pain, then I would be OK with having him/her. But I would not choose to have one who would be in constant or frequent pain, could not communicate and could not fully be part of the family.

There is pre-conception genetic diagnosis, testing etc. available now. I also know a couple who were carriers for Tay-Sachs who had some kind of sperm sorting done to eliminate the ones with the disease and had two healthy kids through IVF - very expensive and painful procedure, though, and I personally would never undertake that for any reason, but if you are not opposed to the idea, it's out there.

I guess I would ask myself WHY I am even considering biological children knowing the possible consequences. Is it THAT important to me to have a baby in my belly that I'm willing to risk that, even if the baby suffers all its life? I do wonder, like WileE, why people do that (though it isn't my life.) I also know a couple of women who had babies right after cancer treatment - one even went off her cancer drugs to conceive. Not my life, but I have to wonder if that's such a good idea. I get the insane drive to have kids because I had it and still do, but there are some circumstances where I think even I would have to put that aside and think beyond what I want. Even now, I would have another kid tomorrow if I were fertile, but I know it would be a really bad idea given where my life is at right now and the needs of my other two so I will make myself wait until there is better timing.
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Thanks for your responses. This next part might be a little lengthy.

I've known about health problems that run in my family -- diabetes, heart disease, etc. -- but as far as my weird health goes, I'd always been told I was normal or that the symptoms weren't harmful. Within the last year, however, I've learned that there is something wrong, beyond just an arrhythmia or two: I have something called POTS. It's not life-threatening, but it does hinder me a bit (I can't stand as long as a "normal" person, I can't be in the heat, I have to pace myself differently, some days I'm a little useless, etc.) -- but I can work with it, and most of the symptoms are manageable for me.

The specialists who diagnosed me think think my POTS is caused by a genetic collagen disorder, and I'm working on getting all my records to the geneticist's office so they can schedule me for an appointment. The genetic counselor I spoke with agrees that it sounds like the disorder and wants the doctor to see me to determine what type I might have, as there are many variants.

This is when I started realizing I might have to weigh my genetics a little more heavily. I've had a lot of joint pain since I was little, and I've been in physical therapy already for arthritis and myofascial issues. But even in one family, the severity can vary: My brother has dislocated both of his knees and had to have surgery to stabilize them. It can affect blood vessels, the heart and other organs, though we seem to be OK in those areas.

Even scarier right now is knowing there's a possibility, though it seems slim, that I have a more serious type of the disorder that can have major complications and shorten life spans. The genetics office said they'd rule this type out, and there are some indications that it could be in my family, so I'm -- understandably, I think -- a little on edge. I don't think I could have a biological child if I carried this type; it would be too dangerous for me, and I couldn't do that to my child. I'm holding on to the slim-possibility thing.

Even now, knowing I could be passing on a disorder that could cause my child pain and even something like POTS, which can also vary in its severity, makes me sad. I don't think my quality of life is poor by any means, though, and I expect I'll try for biological children if I do have a less serious form of the collagen disorder, but there's definitely more to consider now.

I'm also bummed because I so desperately wanted a home birth, and I'm going to be considered a high-risk pregnancy now, so it won't happen. That part's a little more selfish, but it's one of the parts of pregnancy I was really looking forward to.

(Off topic: I've learned so much from all of you on the P&P board. I've been lurking for a little while, and my views and knowledge about childbirth have been radically changed. I went from wanting a C-section to wanting a natural birth. Thank you for continuing to educate me.)
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Any research on folks that have POTS and what do they say?
I'm thinking they went forward, right?
As for your ideal pregnancy, yeah, I wanted that too, tho in the end my rugrat was more important.
I won't get into the logististics, tho could PM you them if you wanted.
Most important to me was that my kid was okay.
Kid at this point is smarter than me & hubby
Wile E, if you don't mind talking about it, I'd appreciate the PM.

There are plenty of people with both POTS and Ehlers-Danlos Syndrome (the collagen/connective-tissue disorder) who have children -- even those with the dangerous/potentially fatal type of EDS. I think I can say I'm unlikely to have biological children if that's the type of EDS that runs in my family. Something like 25 percent of those patients have a serious complication by the time they're 20, with almost all guaranteed to have at least one at some point. I couldn't do that to my children.

The part I find promising is that even though EDS is genetic, it seems that it hasn't affected people in the family too negatively, as I'm the first one in the family to really pursue a diagnosis -- and only because I ended up being diagnosed with POTS first. Even with my brother's dislocations, the doctors never mentioned anything. We've always just lived with it, but somehow knowing it's genetic makes it a little scarier when I think about having kids.
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Last edited by Befrizzled; 08-03-2011 at 03:00 PM.
It is a very personal choice. my friend has two sons with E-D syndrome. She did not know until after the second was around two. Her first had some issues that they relayed to him being preterm. It was also found that she has it also. Which is why she had her first son early and was dilating at 20 weeks with her second. She just found out all of this around 6 months ago, but from what she is mentioning, with the two boys and appointments and issues they are having, I am thinking she is done having children due to the risk of passing it on again.

My son was born with a Chd. The exact cause is not known, but so far a lot of research leans towards genetics. Statistically speaking, I have an 8% chance of having another hlhs baby and a 22% chance of having another heart baby in general. We have continued to have children, and our daughter is totally heart healthy. The babe I am currently pregnant with is heart healthy so far but we will not know for sure until baby is born.

I also have an autoimmune disease called ankolosing spondilosis It is genetic, and my father has it too. I will have the kids tested if they show signs of it, but again I am not too worried. I am glad they will be able to get help sooner than my dad and I did. He was 50 before they dx'd him and I was in my late 20's.



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Thanks for answering, Deezee. I remember when your other children were born, and I was hoping you'd post. I didn't know you were expecting again -- congrats!

Do you know what variant of EDS your friend has and/or what problems her children are having? If you don't want to talk in detail about someone else's health, I completely understand.
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I didn't know you were expecting again either, deezee - congrats!
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Thanks! I am not sure if the exact kind they have. I know both boys have had to have numerous dr.s appointments to get all organs checked out. The one does have issues with textures and food. He is also going to need braces on his legs. Both have gross motor issues. One also has issues where his joints dislocate all the time (even when coloring). She had issues even carrying the pregnancy's full term. Never made it with the first (like I said he was early). She was dilating fast at 20 weeks with her second and was on bedrest the entire pregnancy. Also, she was very sick the whole time. Her eds was not dxed until after he boys though.



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Wile E, if you don't mind talking about it, I'd appreciate the PM.

There are plenty of people with both POTS and Ehlers-Danlos Syndrome (the collagen/connective-tissue disorder) who have children -- even those with the dangerous/potentially fatal type of EDS. I think I can say I'm unlikely to have biological children if that's the type of EDS that runs in my family. Something like 25 percent of those patients have a serious complication by the time they're 20, with almost all guaranteed to have at least one at some point. I couldn't do that to my children.

The part I find promising is that even though EDS is genetic, it seems that it hasn't affected people in the family too negatively, as I'm the first one in the family to really pursue a diagnosis -- and only because I ended up being diagnosed with POTS first. Even with my brother's dislocations, the doctors never mentioned anything. We've always just lived with it, but somehow knowing it's genetic makes it a little scarier when I think about having kids.
Originally Posted by Befrizzled
Try not to worry too much
Sorry, I've been on vaca, but will get w/ you soon!
Thanks! I am not sure if the exact kind they have. I know both boys have had to have numerous dr.s appointments to get all organs checked out. The one does have issues with textures and food. He is also going to need braces on his legs. Both have gross motor issues. One also has issues where his joints dislocate all the time (even when coloring). She had issues even carrying the pregnancy's full term. Never made it with the first (like I said he was early). She was dilating fast at 20 weeks with her second and was on bedrest the entire pregnancy. Also, she was very sick the whole time. Her eds was not dxed until after he boys though.
Originally Posted by deezee02
This is what terrifies me. As far as I can tell, no one in my family is that bad -- I don't know what side it comes from because there are hints of it on both sides, and my relationship with one side is complicated, so I can't ask. It sounds like your friend and her kids are hypermobile or classical. Vascular has less hypermobility but a bigger risk of organ rupture, though the other types can come with heart problems, such as mitral valve prolapse. Textures and food sounds like more of something along like the lines of an autism spectrum disorder; I don't think that has anything to with EDS, unless the trouble is a GI/digestion thing.
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No rush, Wile E.
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It is due to gi issues from his eds, not sensory. They thought sensory until his dx.



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It is due to gi issues from his eds, not sensory. They thought sensory until his dx.
Originally Posted by deezee02
Interesting. I have trouble with some foods, but that's after eating them -- digestion, etc. I haven't heard of an EDS GI issue manifesting as something that elicits a reaction before (attempted) digestion, at least in a way that could be interpreted as a sensory issue.


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