Sigh...wife is about to have an abortion 12 week pregnancy but Trisomy 13 positive detection

KrazyK

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#41
So very sorry to hear of you and your wife's loss. In my prayers.
 

STS134

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#42
Also even though the infant survival can be up to a year (very low probability) the quality of life for that infant is just suffering and I wouldn't wish that on anyone.
Wow: futiletreatment.wordpress.com: Trisomy 13 | Futile Treatment and Newborn Infants

This article kind of reminds me of what happened when my grandmother was in a hospice. My father had power of attorney and she had basically become not very responsive, and was unable to eat or drink. Either my aunt or uncle (or both, I don't exactly remember) wanted the staff to give her fluid through an IV, but my father decided against doing this. He said, we have to do what's best for her, not what's best for the rest of us. Of course, we want her around for as long as possible, but she has no quality of life left, and all this would do is prolong the suffering.
 

tempnexus

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Wow: futiletreatment.wordpress.com: Trisomy 13 | Futile Treatment and Newborn Infants

This article kind of reminds me of what happened when my grandmother was in a hospice. My father had power of attorney and she had basically become not very responsive, and was unable to eat or drink. Either my aunt or uncle (or both, I don't exactly remember) wanted the staff to give her fluid through an IV, but my father decided against doing this. He said, we have to do what's best for her, not what's best for the rest of us. Of course, we want her around for as long as possible, but she has no quality of life left, and all this would do is prolong the suffering.
People often forget that portion of "do no harm" and the reason why some doctors leave out experimental treatment information for individuals who can not afford it. They have seen many families ruin their financial future attempting to pay for a treatment that has only 1% of success thus in the end prolonging the suffering of the patient and ruining future financial aspect of the surviving members. This is seen mostly in the oncology ward...thus most oncologists would opt for support therapy (pain killers and weed) for themselves if they were diagnosed with Stage III or above. (I've spoke to many of them). "Do not Harm" does not mean "Must help" it means....do the least amount of harm in order to provide a favorable outcome combined with favorable quality of life.

edit: Also, it's horrible to prolong the suffering of someone who can not communicate their intentions.
 
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ThreePedals6.2

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#44
Temp I wish you the best..I couldn't imagine going through this...multiple times at that..Stay strong.. Life seems to figure itself in the strangest/harshest ways.
 

STS134

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Temp I wish you the best..I couldn't imagine going through this...multiple times at that..Stay strong.. Life seems to figure itself in the strangest/harshest ways.
Yeah, I'm sure he'll eventually have a healthy baby, it just sometimes takes several tries. Miscarriages are pretty common; I'm not sure if anyone has exact statistics on this though (some don't get reported), but they're a LOT more common than most people think. Just T13 for example, has about a 1 in 10000 chance of occurring. Think about a stadium with 40000 people. Out of that number of babies born, 4 would have it. That's super high, when you consider that there's all the other trisomy disorders that have a chance of occurring too, as well as a whole bunch of other reasons that babies would not be healthy. And when you consider the chance of even T13 alone compared to our chances of actually hitting the jackpot in the lottery when we did the lottery pool, it's astronomically higher.
 

tempnexus

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Yeah, I'm sure he'll eventually have a healthy baby, it just sometimes takes several tries. Miscarriages are pretty common; I'm not sure if anyone has exact statistics on this though (some don't get reported), but they're a LOT more common than most people think. Just T13 for example, has about a 1 in 10000 chance of occurring. Think about a stadium with 40000 people. Out of that number of babies born, 4 would have it. That's super high, when you consider that there's all the other trisomy disorders that have a chance of occurring too, as well as a whole bunch of other reasons that babies would not be healthy. And when you consider the chance of even T13 alone compared to our chances of actually hitting the jackpot in the lottery when we did the lottery pool, it's astronomically higher.


I know but it seems like someone is playing a cruel joke on me...sure the 1st miscarriage is 50% chance the 2nd consecutive is 2% chance the 3rd consecutive is 1% all of them were less than 7 weeks thus the body has found a fetal chromosomal anomaly that was incompatible with life i.e. any T that's not 21, 18 and 13; so the body aborted the pregnancy (eons of evolution helps that). But now the 4th one finally had a heartbeat and it looked fine...the baby was identified to be a female XX chromosome but than during the testing it was found to have T13 gene...now the initial testing is just SCREENING it's not diagnostic....so those who ever find this post via google please follow up with a diagnostic test!!!! Talk to you genetic counselor before taking any action! We knew it was a screening test...which is taken from the placental cells circulating in the maternal blood...i.e. the cells are not directly from the baby, they are from the placenta, and thus placenta can have a disorder called mosaic Trisomy....i.e. there might be mutated cells on the placenta but not in the infant...that most likely occurs if the mother or the father had a benign (non expressed) trisomy disorder...however both my wife and I have gone through a thorough kerotypic screening after the 3rd pregnancy and we have been tested against 270+ chromosomal disorders....we both came out clean. Thus, the screening test of T13 during the blood work was more indicative to the fetus rather than the mother/father....i.e. if mother/father had dormant (non expressed) T21, 18 or 13 than there is a probability that the cells analyzed were from the parent and not the fetus.

However, as stated above, we were both genetically "clean" thus the probability of the test being from the baby jumped to 90%....however, it's still a screening test and not a diagnostic test. Thus, we waited another week for Choronic Villus Sampling (CVS) results to come back to confirm the diagnosis along with Ultrasound to look for fetal abnormalities. Both of those tests came out positive...it's only than that we decided that termination is the option we will be forced to take. So anyone else who has similar diagnosis....please make certain to follow all test procedures and not just the blood work screening!

Edit: As stated in the prior post...I am just glad that we live in the time where such testing at such early pregnancy stage is possible....of course I would love to live in a time where such testing is possible followed by reversible procedure...but alas. I mean I can't imagine living 20 years earlier where such tests did not exist (it started in 2006) and be forced with facing a full term birth that was only viable for few days and then be forced to bury the child...after having my wife spend months in pregnancy, prepping the baby shower and the maternity room.

Edit 2: I am kind of certain that I ****ed myself genetically based on my work....I will try IVF and see if my sperm is just ****ed. Oh well...one more thing to give for my country.
 
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Eloi

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#47
@tempnexus ,
seriously impressive knowledge ...soon we will
have to add Dr Tempnexus...laughing is a good way to heal .
 

GotWake

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#48
Man, I hate to hear it. Our first was a miscarriage and it devastated us. I know the helpless feeling is killing you. Stay strong.
 

STS134

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#49
I know but it seems like someone is playing a cruel joke on me...sure the 1st miscarriage is 50% chance the 2nd consecutive is 2% chance the 3rd consecutive is 1%
Wow, so the probability of a miscarriage isn't independent for each pregnancy? That's very interesting and surprising. Otherwise I'd expect 50%, 25%, 12.5% as the probabilities for consecutive ones. But to get THAT distribution, the probability has to be 50% (1st), 4% (2nd), 50% (3rd).
 

Jag42

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#50
@tempnexus Thoughts and prayers for you and your wife. Safe travels to South Texas. If you come to New Braunfels, give me a shout.
I'm here for you.
 

dchemist

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#52
Thinking of you today. Praying
x2.
You want to fix something? Be that emotional pillar for that beautiful wife of yours. We'll be here to give you support. Extra prayers for you buddy!

Posted from my Pixel 2 using the RDF Mobile App!
 

Jaguar

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#53
Unlike Trisomy 21 DS, T18 and/or T13 are incompatible with life....i.e. baby doesn't live beyond a few days on avg.
Also, my wife is at 12 week any additional week increases risk to the mother during the abortion process. Thus, I would rather choose my wife to live so we can try again than hope for something that is now less than 0.1% from being false positive.
@tempnexus I am so sorry to hear about this, and wish you and your wife long term success in having children of your own in the future. I'm sure this is massively devastating, and you need just as much support as she does.

It is never an easy decision to make, and I'm sure you both made the absolute best decisions you could. Nobody can judge you for that, you will do what is best for the survival for those you love, period.

It infuriates me to think about how many people in this community would condemn you for those decisions, in fact some would probably call you some pretty horrible names. Some think you shouldn't even have the option to make those decisions, regardless of what the outcome is (as you've seen). Their opinion is not worth your time, effort, or energy. Ignore that low frequency noise and focus on the good in your life, the good of your wife, and keep your head held high.

I truly pray for your success, and may you both heal quickly.
 

tempnexus

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#54
Wow, so the probability of a miscarriage isn't independent for each pregnancy? That's very interesting and surprising. Otherwise I'd expect 50%, 25%, 12.5% as the probabilities for consecutive ones. But to get THAT distribution, the probability has to be 50% (1st), 4% (2nd), 50% (3rd).
Yeah I was also surprised by that but apperanatly according to ACOG the numbers are better than 50% for healthy and tha
Thinking of you today. Praying
Thanks about to drive to preop. Then oo at 1400.... hopefully it will go well for the wife and no complications since it's too hard to find a new wife and too much paperwork.
 

Deacon

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Wow, so the probability of a miscarriage isn't independent for each pregnancy? That's very interesting and surprising.
Yeah, the gambler’s fallacy doesn’t apply here because these are not new rolls of the roulette wheel with no other factors or influencing variables between rolls. Genetics, environment, nutrition, age, all kinds of factors are persistent from one to the next. Sadly that means if you got one the odds are much higher that you’ll get another than they were before you ever got pregnant.

It’s by no means any kind of certainty. Just the odds based on the data. I’ve had family members have healthy, happy babies after an initial miscarriage, while others were never successful, and after they decided they didn’t want to go through it anymore they turned to adoption instead and have a healthy, happy family that way.

Human reproduction can be tricky, and it was such a taboo topic for so long that people still don’t really know and understand it that well and definitely don’t like to talk about it publicly very often.
 

cbbr

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#57
I’ve had family members have healthy, happy babies after an initial miscarriage, while others were never successful, and after they decided they didn’t want to go through it anymore they turned to adoption instead and have a healthy, happy family that way.

Human reproduction can be tricky, and it was such a taboo topic for so long that people still don’t really know and understand it that well and definitely don’t like to talk about it publicly very often.

We have 3 healthy kids and batted .500 with the misses in between. Its crazy. It was amazing to me how many friends that I have that had the same type of story. Once you "join the club" it becomes a lot less taboo.
 

STS134

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@tempnexus I am so sorry to hear about this, and wish you and your wife long term success in having children of your own in the future. I'm sure this is massively devastating, and you need just as much support as she does.

It is never an easy decision to make, and I'm sure you both made the absolute best decisions you could. Nobody can judge you for that, you will do what is best for the survival for those you love, period.

It infuriates me to think about how many people in this community would condemn you for those decisions, in fact some would probably call you some pretty horrible names. Some think you shouldn't even have the option to make those decisions, regardless of what the outcome is (as you've seen). Their opinion is not worth your time, effort, or energy. Ignore that low frequency noise and focus on the good in your life, the good of your wife, and keep your head held high.

I truly pray for your success, and may you both heal quickly.
Well I certainly support @tempnexus' decision and I hope everyone else does too. It can't be easy to go through this, but it's unfortunately just part of life.

Yeah, the gambler’s fallacy doesn’t apply here because these are not new rolls of the roulette wheel with no other factors or influencing variables between rolls. Genetics, environment, nutrition, age, all kinds of factors are persistent from one to the next. Sadly that means if you got one the odds are much higher that you’ll get another than they were before you ever got pregnant.

It’s by no means any kind of certainty. Just the odds based on the data. I’ve had family members have healthy, happy babies after an initial miscarriage, while others were never successful, and after they decided they didn’t want to go through it anymore they turned to adoption instead and have a healthy, happy family that way.

Human reproduction can be tricky, and it was such a taboo topic for so long that people still don’t really know and understand it that well and definitely don’t like to talk about it publicly very often.
But this IS conditional probability here. Say A is the event that you have a (first) miscarriage, and B is the chance that you have a (second) miscarriage. Then what tempnexus said is that P(A) = 50%. P(B | A) = 2% and thus, the probability that B occurs, given that A has already occurred, is 4%. Of course this says nothing about P(B) in the case that A does not occur. And then, more strangely, say C is the chance of a (third) miscarriage. Then we know that P(C | (A and B)) = 1%. I'll have to look at my probabilities theorems that I haven't used since I was in school to analyze the numbers but it seems on the surface like P(B) has a much lower chance of occurring if A DOES occur, but then P(C) is relatively very likely to occur if A and B already occurred, which is strange.

We have 3 healthy kids and batted .500 with the misses in between. Its crazy. It was amazing to me how many friends that I have that had the same type of story. Once you "join the club" it becomes a lot less taboo.
I suspect that there was never evolutionary pressure to make most fetuses be perfect, so long as imperfect ones are flushed from the body in early stages. I think the fact that T21 (and to a lesser extent, T13 and a few others) are actually survivable until birth and sometimes longer, is an evolutionary mistake in fact. It makes no sense for a woman's body to spend so many resources on producing a kid who ultimately either won't live a full life and definitely won't be able to reproduce, so anyone who has genetic code that aborts T21 and T13 babies earlier should have an evolutionary advantage over the rest of the population (if there is a famine, that woman would be more likely to survive it).
 
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Kennyc56

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May God bless and be with you and your wife! I'm very sorry for your loss.
 
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Deacon

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But this IS conditional probability here. Say A is the event that you have a (first) miscarriage, and B is the chance that you have a (second) miscarriage. Then what tempnexus said is that P(A) = 50%. P(B | A) = 2% and thus, the probability that B occurs, given that A has already occurred, is 4%. Of course this says nothing about P(B) in the case that A does not occur. And then, more strangely, say C is the chance of a (third) miscarriage. Then we know that P(C | (A and B)) = 1%. I'll have to look at my probabilities theorems that I haven't used since I was in school to analyze the numbers but it seems on the surface like P(B) has a much lower chance of occurring if A DOES occur, but then P(C) is relatively very likely to occur if A and B already occurred, which is strange.
I don’t know this area of math well at all. I don’t rally think the risk of any given woman’s first pregnancy resulting in a miscarriage is actually 50%. That seems much higher than I would expect, but what do I know? Maybe @tempnexus can clarify what he meant. I’m guessing he was talking about a very specific scenario.