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Hypothetical babymaking question
A coworker of mine just had a baby about a week ago, and was out the last few days suddenly. He came back today and told us that he found out his kid has cystic fibrosis.
QUESTION: Are you going to have pre-conception genetic testing done to see if you are a carrier of any recessive genes that can cause diseases like CF?
How about genetic testing after conception?
If you found out that you both carried a gene and therefore gave your child a 25% chance of a disease, would to continue forward?
If you found out about the disease when you were already pregnant, would you keep it? Give it up for adoption? Abort?
I'm not in a babymaking place, but this got me thinking today. I feel so bad for the parents. Obviously even genetic screenings aren't a guarantee and they didn't do them with no family history of CF I'm sure, but it just blindsides you. I really would like to do pre-conception genetic screenings...I like to know these things. Even if there's just a chance.
Re: Hypothetical babymaking question
Good questions.
No I do not plan on having pre-conception genetic testing, therefore I wouldn't know and yes I would keep on trying even if I did know.
If I found out during my pregnancy that something was wrong I would 100% keep my baby.
I have always wanted to be a mom, and cannot wait for that day. Hubs and I are not in any way ready for kids yet so we are not yet trying. But, I get my fill every day as I'm a pediatric occupational therapist and I work with children birth-three. That means I work with all of the wonderful babies that "aren't perfect." Everything happens for a reason, and if I am meant to have a child that has different abilities I will still love it and provide for it the best that I can.
The tests aren't always right. I work with many families who have either had tests that show major issues and the baby is fine, or the tests show that everything is great, and the baby is born with a lot going on. (I am not trying to be snarky so sorry if I sound like I am...this is just something that I feel very strongly about and I would never abort a baby just because something "might" be different about it).
I would possibly get tested for it either way.
Never would I consider an abortion...I'm completely against abortion in any and all situations.
TTC since Sept. 2011
DX: MFI
IUI#1 8/2012: BFN
IUI#2 9/2012: BFN
IUI#3 10/2012: BFN
IVF#1 (2 embryos transferred) 1/2013: BFN
IVF#2 (2 embryos transferred) 5/2013: BFP!!! EDD 1/24/14
Beta 1 (5/17) - 66.8 Beta 2 (5/21) - 341 Beta 3 (5/27) - 2771
1st u/s 6/7 - measuring right on track at 7 weeks with 144 bpm!
1/20/14 - Our sweet girl joined our family!
My Local Nestie Besties: JenniferLuvsCandy, MABride0808, thecuddleeffect, MrsHo1030
I don't plan I getting tested because I (naively) believe that nothing could be predicted in that. Of course, no one plans to have a baby with a genetic illness, but we both come from such healthy families I am just not worried about it.
I wouldn't abort a baby even if something were wrong with it, even though I completely support a woman's right to choose. I don't think anyone makes that decision lightly, whether they tell you about it or not, and it is absolutely none of my business what a woman wants to do with her own body, just as what I want to do with mine is my own.
But I, also, worked with lots of (medically and emotionally) imperfect kids and I actually feel that, because of this, I am better equipped than average to deal with their specific needs. I've actually talked to my husband about possibly adopting some kids with special needs in the future (probably emotional needs, not physical), but I'm not ready to be anyone's parent yet.
<a href="http://www.thenest.com/?utm_source=ticker&utm_medium=HTML&utm_campaign=tickers" title="D
Really any and all situations? What if your baby was deformed and would only live a month at most? I would rather terminate and be selfish b/c I think losing it while in the womb would be easier than holding it and losing it after it was a month old with a horrible life. I wouldn't be able to watch the baby die.
I hadn't really thought of getting tested. I don't think I would be against it and would consider testing when we came to that point.
My husband was genetically tested when we got engaged - it's a common thing for Jewish families of Eastern European descent since there are many genetic diseases carried in that community. He came up negative, which means our kids likely won't have any problems, but to tell you the truth I don't really know what we would do if he was positive. If we did try, I think if the baby tested positive for one of the diseases where it's likely to die a horrible death a few months after birth, I would probably have an abortion.
CLNDR, are you against abortion even if the mother's life is in danger? Just curious.
Yes...even then. It's not my job to choose when my baby should die. Yes, obviously that situation (deformed baby; living only a month) would be tough and I wouldn't want it to happen. However, if I'm pregnant and get told that, it doesn't matter. You never know what could happen...the doctors aren't always 100% right, and, even if they were, it's still not my right to decide when the baby will die.
Dandy, not sure about that one...I know in tubal pregnancies (I think that's what they're called) the chance of the mother living is, like, zero. I don't know how I feel about that, though. It's still not my or anyone else's job to decide when the baby should die. If you know for sure, though, that the mother is gonna die, then maybe....I really am uncertain on that one.
TTC since Sept. 2011
DX: MFI
IUI#1 8/2012: BFN
IUI#2 9/2012: BFN
IUI#3 10/2012: BFN
IVF#1 (2 embryos transferred) 1/2013: BFN
IVF#2 (2 embryos transferred) 5/2013: BFP!!! EDD 1/24/14
Beta 1 (5/17) - 66.8 Beta 2 (5/21) - 341 Beta 3 (5/27) - 2771
1st u/s 6/7 - measuring right on track at 7 weeks with 144 bpm!
1/20/14 - Our sweet girl joined our family!
My Local Nestie Besties: JenniferLuvsCandy, MABride0808, thecuddleeffect, MrsHo1030
I didn't really answer my question completely.
Yes, I probably will do genetic testing. I overplan everything else, why not this?
I won't do any testing after conception unless recommended by a doctor. Amnios are too risky to just do.
If I found out I was having a child that was severely malformed in some way, I would abort. And I would probably tell my family I had a miscarriage. How messed up is THAT?
If I found out that carrying the baby to term would cause death to me, I would absolutely abort. At that point, it's self-defense. Yea, I don't believe in murder, but if someone comes after me with a knife, I would knife them back.
Of course I've never been KU, so I have no idea if my thoughts would change when it's actually happening. I feel pretty strongly about these decisions.
If you KNEW in your first tri that your baby had CF - a disease that you can live with but will struggle though, and which has a life expectancy of like 36 - I wonder how many people would abort? I mean, that's no death sentence and medicine is increasing the life expectancy every day, but still to know that you will likely outlive your child and know that they will have to deal with that...that's rough.
We were just talking about this on another board and the responses are very interesting. It was in reaction to this article, based on research in the UK: [urlhttp://news.yahoo.com/s/afp/20091027/hl_afp/britainwomanhealthdowns_20091027162053[/url]
At the very end it says that 92% of people get abortions after finding out their child has tested positive for downs syndrome.
Personally, we won't be getting any genetic testing done (but this is because we ave no known reason to - like dandy said, for some groups it makes sense when there is a high risk). In that case the results of the test woudl influence my decision to get KU.
They do bloodwork automatically though to test for risk factors for certain illnesses, such as downs. Then you get the option of having more definitive tests done - I don't know what I'd do if the bloodwork comes back bad - if I had further testing done it would be to prepare myself.
If I had a child who: had an extremely short and painful life expectancy (guaranteed less than a 2-3 years); or if I was in extreme danger, I would probably abort.
If it was something like downs or CF then I would not abort. I think that with those diseases there is a lot of variability of severity and many people can live happy productive lives. So what if the aren't "perfect," who am I to decide who deserves to be part of this world.
Ditto, on all accounts. My husband and I have to undergo testing when we decide to start trying to have kids because he might be a carrier for Tay-Sachs. It's only an issue if we're both carriers. D, was your husband able to get insurance to cover it even though you weren't actively trying to have kids and without a referral from your OB/GYN? We were wondering about that, and my husband thinks that we have to wait until we can get that.
My husband actually read an article that mentioned an initiative in Philadelphia to promote genetic testing among young Jewish couples. It involved free genetic testing, and we happened to be going to Philadelphia, so we got it done then. I think there are other free genetic testing programs in areas with large Jewish populations. Ours was at the Albert Einstein Medical Center.
PS, He thought the whole process was so interesting he's thinking about specializing in genetic diseases! Everyone (and by everyone, i mean his dad, who seems to think the only specialty for his darling son is neurosurgery) keeps telling him "There's no money in that, don't do it" which is reeeeeally obnoxious.
DH will be getting tested for a genetic condition that runs in his family. He has a cousin that has lost every baby they have conceived because of it. If he is a carrier than I will have to get tested as well.
As far as abortion goes, I am 100% pro-choice and would get one myself in the right situation. I can't say right now whether or not I would get an abortion because of a disability that presented itself. That would be something I would have to decide in the moment.
Yeah, with the views you have it seems like that would be a tough decision. In a situation like that, the course of medical action would mean doing something that you know will save the baby but not the mother, and vice versa. You say it's not your place to decide when a baby should die, but is it your place to decide when a grown woman should die?
ETA I don't mean you, as in you. I mean you, as in, the person debating this in their head. It sounded a little accusatory after I reread it.
That's really interesting, I'll have to look into that - thanks!
And PS, everyone is telling my husband the same thing about going into psychiatry. I keep reminding him to just think to himself that they should STFU and he should do something that he's truly passionate about, because he doesn't want to end up hating his career. He's come to adopt the attitude that anyone can make a lot of money in any field, as long as they put in the hours and hard work.
First of all, thanks for being nice about your response. I kinda feared coming back into this thread...lol.
Second of all, I get what you're saying about deciding when a grown woman should die. However, there's never a 100% guarantee that anyone (mother or baby) is gonna die.
I still am honestly not sure what I would do if it were a situation in which the doctor was saying I was gonna die if we didn't abort the baby, though.
In any other situation, I know I am 100% against it.
TTC since Sept. 2011
DX: MFI
IUI#1 8/2012: BFN
IUI#2 9/2012: BFN
IUI#3 10/2012: BFN
IVF#1 (2 embryos transferred) 1/2013: BFN
IVF#2 (2 embryos transferred) 5/2013: BFP!!! EDD 1/24/14
Beta 1 (5/17) - 66.8 Beta 2 (5/21) - 341 Beta 3 (5/27) - 2771
1st u/s 6/7 - measuring right on track at 7 weeks with 144 bpm!
1/20/14 - Our sweet girl joined our family!
My Local Nestie Besties: JenniferLuvsCandy, MABride0808, thecuddleeffect, MrsHo1030
I actually hadn't thought about getting tested... the only diseases in my family are diabetes and heart disease, neither of which would prevent me having the kid, even if I knew they would have one, or both. I think I would probably get tested after conceiving, just to be prepared. In the case of Downs or CF, I would probably still have the child and raise it.
I grew up with a girl with Downs, who was also deaf and mentally deficient. (I used to baby sit her when we were both 15) I can't imagine that her mother would have had an abortion if she'd known... even though the daughter (now 30) will always need supervision and lived at home until recently. (She moved into a "home" where she is with other people with similar disabilities and has a job helping in the kitchen.)
I think that I would only get an abortion if I was in danger. It absolutely is a case of self-defense, if the baby is going to kill me, it loses its right to live in my eyes.
I'd like to say I would not abort for other disabilities, but I don't think I can really know what I would do until the situation arises. Selfishly, I would probably take my chances of conceiving again into account. I might be more likely to keep a child with problems if I knew I couldn't have another.
I would not give it up for adoption. I do think the kid has a right to try to survive, no matter what might be wrong, but I think giving up a kid with those kinds of problems is a bit like dropping a sick dog at the pound - odds of getting adopted are close to nil. I have a friend who adopted two kids, and he's said that he would not adopt a child with disabilities because he doesn't want the extra expense/stress. However, his children have the same mother, and he did say that if she had another he would also adopt that one, even if it was disabled, and even though he only wants two... because he wants his sons to know their siblings. But I think that that is a rare decision. I don't think most people would adopt a child with disabilities.
I have been lurking on here since I got married as I have been TTC and its interesting that you just posted this b/c I went to a Reproductive Endocrinologist yesterday and was asked if I wanted to do the test. I am not sure yet. I did find out that in the state of KS they automatically test newborns for it right after they are born. Not sure what I would do if I found out I was carrying a baby with issues. I would probably keep it as I am struggling with possible IF right now.
Seeing as I am pregnant, here are my thoughts:
We did not get genetic testing pre or post conception. There is no history of disabilities in our families. They do take about 6 vials of blood at your first appointment and do preliminary tests to check. You do have the choice of further testing though. Our reasons for not getting further testing is that there are many false positives out there. I didn't want to risk getting an amnio if something came back positive. Plus I wouldn't abort if something were wrong. It's my baby and I will love it no matter the outcome.
It is truly an individual choice and no matter what you choose, it is the right choice for you.
Great topic!
Very interesting responses. We got the screening at 12 weeks pregnant that does not involve any invasive procedure. They just tested my blood and did an ultrasound. But supposedly, that testing could have told us if there was anything abnormal with the babies. In all honesty, I just went to those appointments because there was a chance we could find out the baby's sex at that time.
I understand everyone's viewpoints, but kind of find it shocking and upsetting that just because a child isn't 100% 'perfect,' people would automatically abort. When I worked in non-profit, our biggest client was the ARC of Palm Beach County. It was a school where severely disabled children, meaning they couldn't walk or talk, came to learn and socialize. Just thinking about those kids now brings tears to my eyes. They were all so special, even though they were significantly disabled. They learned to control letters and speak through head motions in their wheelchairs and even put on a Nutcracker pageant! We had Goldie Hawn come to speak at a fundraiser for them and they put together an auditory card that told her that they loved her and thought she was so beautiful and nice etc...I think she cried for 10 minutes after listening to it.
My point is, just because the child isn't perfect by modern standards, does not mean they cannot lead happy lives. Yes, it would be a thousand times harder than having 'normal' children who don't need the specialized care, but those children are so, so sweet and I give them and their parents so much credit.?
We did not do any sort of genetic testing and probably won't do anything beyond what is normally done unless there is reason to believe there could be a problem. If there was a disability suspected we would still continue the pregnancy and raise our child.
While I'm not against abortion in every situation, I can't say I agree with it in this situation. A co-worker's sister was told a few months ago that her child could have down's syndrome and it was later born completely healthy. There's just no guarantee either way. I wouldn't want the child to be miserable or to suffer but as a long time Special Olympics volunteer, I know that many people with disabilities can lead happy and successful lives if given the right opportunities.
I personally am very torn on the subject and feel as though it would depend on the severity of the medical issue and the ability of a child to survive.
I would never abort for a survivable issue, but a close family friend of ours faced this issue and convinced me that sometimes abortion is more kind. They were told their daughter had severe health problems (i.e. a heart that didn't function, brain abnormalities, etc) and needed to be aborted. They decided it was up to God and went through with their pregnancy. Their child lived 6 months. During that six months, she underwent 13 separate, invasive surgeries. They genuinely feel that their daughter suffered from their decision and that they were selfish to keep her here, constantly on machines and under the knife.
I am completely aware that if she lived they would not have thought twice of all the surgeries, but it does make me realize there is a point to just let go. I also know i would be much more devestated by losing a child i had grown to love then to lose a child i never gave birth to. That is selfish on my part, but it would be hard to watch my baby slowly die.
Are you going to have pre-conception genetic testing done to see if you are a carrier of any recessive genes that can cause diseases like CF? No. There are no known diseases like that that run in our family.
How about genetic testing after conception? No. It wouldn't change the decision to carry the child to term, so why test. That said, there are markers for the biggest concern I have (Downs Sydrome. I had a cousin with it and am fast approaching 35...when risks of it go up.) I would still have the child, that wouldn't change, but I'd want to prepare myself for it. If it were a bigger issue, like something that could take the childs life before/during/soon after birth...I'd want to know...but I think I'd still carry the child to term and then do all I could to insure it did not suffer in the time it had on Earth. Most of the things I'd want to know about are things that can be at least flagged as possibilities during ultrasounds.
If you found out that you both carried a gene and therefore gave your child a 25% chance of a disease, would to continue forward? Depends what disease it was and how it could effect the childs quality of life. If it were something really bad, maybe we'd adopt.
If you found out about the disease when you were already pregnant, would you keep it? Give it up for adoption? Abort? I'd like to think that I would give the child a shot at life...but I CANNOT and WILL NOT judge anyone else for a decision they would make in those shoes. I truly hope I never am in the position where I have to make that call.
Since I know some pp broached the question of abortion if the mothers life was in danger...that I'd do...especially if we already had other kids.
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I've been thinking about the "what if the mother is in danger" scenario a little more and I have to say that I still wouldn't do it then.
I know most (if not all) of you think I'm crazy for that, but that's okay.
I'm a Christian, and I know that God is capable of anything, no matter what doctors tell the mother. Therefore, even if the mother is "going to die", God could perform a miracle and decide to save her. I say: try with everything you can to save both mother and baby. If one dies, then that's obviously what God wanted and that's all. Of course it's tough and I hope I'm never EVER in that situation and I feel so badly for those who are. I'm still against abortion, though.
TTC since Sept. 2011
DX: MFI
IUI#1 8/2012: BFN
IUI#2 9/2012: BFN
IUI#3 10/2012: BFN
IVF#1 (2 embryos transferred) 1/2013: BFN
IVF#2 (2 embryos transferred) 5/2013: BFP!!! EDD 1/24/14
Beta 1 (5/17) - 66.8 Beta 2 (5/21) - 341 Beta 3 (5/27) - 2771
1st u/s 6/7 - measuring right on track at 7 weeks with 144 bpm!
1/20/14 - Our sweet girl joined our family!
My Local Nestie Besties: JenniferLuvsCandy, MABride0808, thecuddleeffect, MrsHo1030