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 but depending on which option it doesn't necessarily catch everything (PGD only tests for the biggies DS/trisomies/etc) CGD tests for more but requires a lot of effort/time/money.
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.
Post by TrudyCampbell on Mar 5, 2015 10:15:05 GMT -5
Those odds are too great for me. There's no way I'd risk passing it on.
My daughter has a rare genetic disorder (not inherited from us, not HD and nothing fatal) and it breaks my heart that she will have to make these kinds of decisions one day. I am so hopeful that reproductive medicine is advancing everyday so hopefully in 25 years there will be many more options for everyone in this situation.
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 37), 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 me if he does have it, this is not 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.
J has NF1, too. We plan to reach him about it and counsel him to see a geneticist before making any reproductive decisions. I see a huge difference between this and a life-threatening illness, to the point that J didn't even occur to me when I answered this question.
It's their choice. I have nothing but the deepest compassion for those who are faced with making it.
I also agree with this.
While it seems an easy choice for me, reproductive choices are not easy for everyone, and I am a strong believer that we must allow the CHOICE to remain the couple's/individual's no matter what. It becomes a horrible slippery slope otherwise.
Post by underwaterrhymes on Mar 5, 2015 10:28:21 GMT -5
I've worked extensively with families who have children with life-threatening diseases, including one that is a horrific and fatal genetic disorder.
With this particular disease, most people don't know they're carriers until they have a child with the disease and some didn't find out until they had two or more children with the disease.
Once they know both parents are carriers, many make the decision to either stop having children altogether or to pursue IVG / PGD or adoption.
Some, however, make the decision to have more children, even knowing that their first had this disease. And they did it because of the love and laughter that their children brought into their lives. They definitely have experienced the pain associated with the disease, but they've also had so much joy too.
That's where I think a lot of people are coming from and why, although I might make a different decision, I can't fault someone for going this route.
Post by NothingWrongwithOhio on Mar 5, 2015 10:31:43 GMT -5
I was never into having children in the first place, and my family has a long history of adoption (including me) so maybe it's easier to answer that question.
First off, after I found out I was pregnant, I had to get a boat load of testing done (adopted, no family history). Turns out, I'm a carrier for CF. In the time between my results coming back and waiting for H's subsequent test results, we had decided that if the baby had CF we would terminate the pregnancy. Luckily, H is not a carrier, so we didn't even have to proceed to fetal testing.
But if we were both carriers and H decided he DESPERATELY needed to be a father, I imagine we would have gone the adoption route, the same for any genetic disease with that type of outcome.
My bf's good friend's father had HD, he passed away. I'm not sure if he knew he had it before they had children but her sister had the juvenile version, she passed away last year. She was 26. Bf's friend is a carrier but hasn't shown symptoms yet, she's 33. They had one child. Their daughter thankfully isn't a carrier and they aren't having any more children. I feel like this must have been such a hard decision whether to have children or not. I don't judge them but I can't imagine the relief they must feel that their daughter isn't a carrier.
ETA-I'm not really sure what the point of sharing their story is, just I guess you don't what you are going to do unless you are faced with the decision.
Some, however, make the decision to have more children, even knowing that their first had this disease. And they did it because of the love and laughter that their children brought into their lives. They definitely have experienced the pain associated with the disease, but they've also had so much joy too.
That makes sense that they would want to think about the joy instead of the pain of the child. I'm usually an optimistic/glass half full kind of person, so I do get that to an extent.
I'm sure it's an emotional roller coaster for adults with HD making these decisions.
DH's cancer was caused by a genetic mutation that has a 50% chance of being passed on and 77% of carriers will have a tumor before age 50. That plus the fact that his cancer is incurable means we're not having any children, biological or through other methods.
I going to chalk this up to decisions I am lucky not to have had to make. We have two kids and thought about a third, but time and perspective have made me so glad we are done. Having a healthy child is such a gamble when you think of all the things that could go another direction. Not out of the woods, obviously, but we are soooo grateful for how things are currently;)
Having kids is pretty selfish. Having genetic kids, when there are kids out there who need homes is selfish, too. I just can't get on board for judging how people have their kids because it is shades of gray on selfishness.
Knowing myself and my husband and how we felt before having kids, a genetic disorder with such a high rate of probability would have probably taken biological kids off the table. It is what it is.
We discuss lots of difficult topics here, I don't see why this one should be off limits. HD is so horrible and always fatal:( For this specific disease I would likely not have bio children.
I tried to make the title clear so that if people were sensitive they didn't have to read it.
I know just last week there was a post about sexual abuse and many other difficult topics over the years.
I didn't mean to hurt anyone's feelings and I hope those that shared their stories didn't feel like any of us who haven't been in the exact situation were judging them.
And with regard to genetic testing, I recently took a swab test that checks for a variety of issues. I'm excited to see the results bc I have been curious about health issues with which I may be pre dispositioned. I checked initially because there is a specific gene I am curious about, but this supposedly gives you a ton a data. I paid for it OOP.
Do you have a list of disorders that it tests? How long before your results? I'm just curious and would love to read about it.
I'm sure waiting in anticipation is the worse, hope you find out soon.
Post by mrsukyankee on Mar 5, 2015 11:00:40 GMT -5
When I was doing IVF, I went to the clinic that was known for doing genetic testing and could actually test the eggs/sperm before insertion. I would have totally gotten this done if IVF had worked for me.
It's an emotional topic - and understandably so - but I didn't see anyone say that we shouldn't discuss it.
There were 2 or 3 people above saying they didn't like this thread. I think that's what mofongo was referring to.
I think it's okay to not like this thread, though, right? I mean, it's a really sad thing to think about.
But I also think that those of us who have direct connections with genetic disorders either because we have one or our kids do have understandable gut reactions to this.
When I asked people's opinions maybe a year or so ago what they would do in my shoes, most people said they wouldn't have biological kids. I respected their opinions (and was actually originally headed that route) even if it's ultimately the route we didn't take. It was a very thoughtful conversation and I appreciated everyone's input.
The only response that bothered me was the person who said that if she were me she would do an amnio and then abort if the child had NF-1. Which is absolutely her decision to make (I'm pro-choice), but that would not be the route we'd take with this disorder being that most people with the disorder do have very full, lengthy, and happy lives.
Oh, and Sue told me that I was crazy for having kids this old. LOL.
What documentary is this? I'm interested in watching it.
My grandma (mom's mom) passed away from HD. Her mother did also. I don't remember a time that my nanny wasn't sick with it. She was diagnosed shortly after I was born. When I was in junior high she was wheel chair bound. By high school she was bedridden. She passed away from freshman year in college.
My mom has never been tested, she's in her 50's now and has no symptoms. Sadly, her brother started showing symptoms within the last few years and was recently diagnosed. It's heartbreaking. He's single, has 2 grown daughters and 3 grandchildren. A lot of the responsibility of taking care of him (now and in the future when he can't care for himself) has fallen on my mom. I asked her the other day if his daughters had been tested. She said that C (the oldest one and the one with her own children) had looked into it, but was told she was not mentally stable enough to be tested. I guess they don't think she could handle the results if they showed she is a carrier. I had a large range of emotions when I found that out.
Back to your original question - when I was married and trying to get pregnant, I honestly didn't even consider getting tested or HD being in my family at all. Probably some denial. I'm divorced now and childless. And plan to remain childless for many reasons. Since my mom is as old as she is and hasn't shown signs, the possibility that my brother and I are carriers is impossible (from my understanding). But I will admit, it did weigh into my decision to remain childless. It's an awful, awful, awful disease. I do not believe that my brother and his wife were tested before having their first child.
This is so hard. I have the 50% chance of having HD. It's been mostly a secret in my family, as my dad killed him himself when I was just ten. My mom always told me he was just mentally ill. As a teenager I connected with my estranged uncle who was actively dying from HD. I was there in his final days. I became very serious about my health and saw several doctors at Rutger's U to determine my future. They wouldn't do it because I was too young. I was obsessed and anxious and reckless. My brother was completely unsupportive.
I met my husband and I guess I put it out of my mind. I got pregnant (accidentally). I told all of my doctors about my history. It probably just ended up as a note in my file. I got pregnant again. Life with my children is wonderful.
There are few days that I don't feel guilt or anxiety about our futures. I guess I'm being deliberately ignorant not trying to get tested again for my children. But I'm really not sure if I could handle a positive diagnosis because of my babies and my brother and his baby.
Post by whiskeyandwine on Mar 5, 2015 11:25:10 GMT -5
I think everybody jumping to, "I'd adopt" hasn't really looked into adopting. It's a hard, long, expensive process that isn't going to be made any easier by one parent having a fatal disorder.
There was a case where a woman's husband had HD and died and then their two sons also had it. This is terrible, but she eventually shot them because she just could not take it anymore. Watching them suffer, knowing what was ahead for them and as their care giver, her. IT was just awful.
Lurker posting: My mom has HD and I wanted to know FOR SURE I wouldn't pass it on if we had children. I tested negative 5 years ago, and it is still a mind fuck. My moms disease is absolutely horrible. I grew up thinking I had it, every emotional change, every leg or arm twitch made me more and more sure. I've gone through so much counseling to get over my issues and my guilt for not having it (like I had a choice). I thought we would be ready for children right away after my diagnosis. But I realized that I had to find myself first, I've been so buried in the HD mindset that I forgot who I was.
It's rare that a child that is HD positive will exhibit symptoms so early, it does happen but it's rare. HD usually shows up in middle age. (30-50) My mom was in her mid 30's. And it gets stronger with each generation. My sister might be early 30's if she has it. I can see a lot more young people showing symptoms of this trend continues.
My cousin got pregnant and then tested positive. I can't blame her for wanting to live as normal of a life as possible. She feels fine now, so she wants to live it up while she can. I am torn. She just had another baby. It's just so hard. I hope to God that she and those kids have a good support system. I know how ugly it can get and I hope that it isn't like that for her.
DH's cancer was caused by a genetic mutation that has a 50% chance of being passed on and 77% of carriers will have a tumor before age 50. That plus the fact that his cancer is incurable means we're not having any children, biological or through other methods.
What documentary is this? I'm interested in watching it.
My grandma (mom's mom) passed away from HD. Her mother did also. I don't remember a time that my nanny wasn't sick with it. She was diagnosed shortly after I was born. When I was in junior high she was wheel chair bound. By high school she was bedridden. She passed away from freshman year in college.
My mom has never been tested, she's in her 50's now and has no symptoms. Sadly, her brother started showing symptoms within the last few years and was recently diagnosed. It's heartbreaking. He's single, has 2 grown daughters and 3 grandchildren. A lot of the responsibility of taking care of him (now and in the future when he can't care for himself) has fallen on my mom. I asked her the other day if his daughters had been tested. She said that C (the oldest one and the one with her own children) had looked into it, but was told she was not mentally stable enough to be tested. I guess they don't think she could handle the results if they showed she is a carrier. I had a large range of emotions when I found that out.
Back to your original question - when I was married and trying to get pregnant, I honestly didn't even consider getting tested or HD being in my family at all. Probably some denial. I'm divorced now and childless. And plan to remain childless for many reasons. Since my mom is as old as she is and hasn't shown signs, the possibility that my brother and I are carriers is impossible (from my understanding). But I will admit, it did weigh into my decision to remain childless. It's an awful, awful, awful disease. I do not believe that my brother and his wife were tested before having their first child.
Can you elaborate on this? My grandmother was diagnosed with HD in her mid 70s. My mom has not been tested yet to my knowledge but is in her late 50s and shows no signs of having it.
I think everybody jumping to, "I'd adopt" hasn't really looked into adopting. It's a hard, long, expensive process that isn't going to be made any easier by one parent having a fatal disorder.
I saw this on the app "recent threads" and had to jump in because this is true. In my adoption experience with domestic infant adoption, having a fatal genetic disorder would mean you may not be able to adopt. Hubs and I both have medical conditions and had to get extra dr notes on top of what was already required saying they don't shorten our expected life span or our ability to care for a baby.