Abby's "Struggle" with infertility

[valsa]

I've watched in horror when people say such things to women who have just lost a pregnancy and...it's rather like being in a funeral when someone goes up to the grieving spouse and says "well, Jesus needed him in heaven". It's just salt in a wound.

Yeah, I fail to see how essentially saying "Don't worry, s/he/it was probably defective!" is very beneficial.

[mockingbird]

I'm sure that the week you spent on autosomal recessive genes was educational, but CF is not one of those "severe genetic defects" that the body would recognize as deleterious.

I'm not trying to split hairs, but your generalization is not valid. We don't have a lot of advocacy, so I make it my job to make sure that people have the right information when it comes to CF.

Just going off what SnarkyKitty said, there are some genetic disorders where having two of the defective gene is a so-called "lethal" combination. For example, achondroplasia is an autosomal dominant disorder in which one copy of the achondroplasia gene causes the disease, but having two copies results in too much damage and my understanding is that this is a situation that *would* cause a miscarriage. However, none of the CF genes are known to cause this phenomenon. In the case of CF, two of the CF gene would simply cause CF. Not every woman who has a miscarriage is going to have genetic testing, so you might not know the individual cause of a miscarriage, but it's also not necessarily true that there is *no* way to study this - we do know about the "behavior" of many genetic disorders to identify many gene combinations that could cause a miscarriage (of course there may be others), and which would not.

ETA: I changed some of my wording because I thought it sounded too clinical... I am not trying to be insensitive to women on here who have suffered miscarriages, but to explain the phenomenon that bekkah seems to have misunderstood. I agree that saying your baby would have been too sick to live anyway is cold comfort, at best.

[Jinger Jar]

Yeah, I fail to see how essentially saying "Don't worry, s/he/it was probably defective!" is very beneficial.

It's right up there with, "Don't worry, you can always get pregnant again." :(

[slickcat79]

I sort of get what you are talking about Slickcat, like that even though the odds stay the same with each child, statistically its unlikely to have 5 children that dont have CF (without any form of genetic testing).

Like rolling a dice, you have a 1 in 6 chance of rolling a 6 every single time, but it would be incredibly unlikely for you to roll the same number 5 times in a row, even if the odds dont change, because its as likely for the other options to be chosen randomly. I remember us learning something like that in school, calculating the odds of a certain result when its repeated several times.

Yes, this. EACH pregnancy has a 75% of not having CF, but 2 (or 3 or 4 or 5) pregnancies TOGETHER have a smaller chance. It has nothing to do with anything specific to CF, it's just simple statistics. If Abigail and her husband are both carriers, the chances of them having 5 children without CF are 23.7% because you're not looking at each pregnancy individually but all of them cumulatively.

[anjulibai]

Yes, this. EACH pregnancy has a 75% of not having CF, but 2 (or 3 or 4 or 5) pregnancies TOGETHER have a smaller chance. It has nothing to do with anything specific to CF, it's just simple statistics. If Abigail and her husband are both carriers, the chances of them having 5 children without CF are 23.7% because you're not looking at each pregnancy individually but all of them cumulatively.

ITA. I'm taking stats right now, and we just did a unit on this exact type of problem. You have the math correct. While each pregnancy has a 1 in 4 chance of producing a child with the disorder, as the number of pregnancies increase, the chance of no child inheriting the disorder will decrease.

[flyawaystray]

Which makes me believe she's not a carrier, or she's been incredibly lucky. I pointed out originally that the math doesn't make sense when it comes to her kids all not having CF.

[desertvixen]

I see there's a music video and Girl Scout cookie sales stats up, but no response to Brenda.

[chaotic life]

My son's birthmother was at child #6 last I heard, all with the same mother and father. My son was her second and her only to have CF. Somehow, none of the four that came after him got it. It was still devestating for him, and in fact killed him.

I know a family who had 8 kids, CF wasn't detected until the 8th child and then it was discovered that four of the children had CF.

I know another family with 8 kids. The last two were a different father. Last kid showed CF. Several years later, two of the half siblings showed some signs and mom had them tested. She was a bizarre statistic that she married TWO men who were carriers and had three children with it.

[browngrl]

not sure how pertinent this is to this thread but I find it to be a major medical turning point (and fascinating to boot): cell free fetal dna testing will soon be possible (right now doing only certain genetic diseases - depends where you live in the world - much more established in Europe/England compared to Canada) to sequence the fetal genome by doing a blood test on the mom (in the first trimester - so if termination is elected it can be done early on) - so it will be possible to test for multiple genetic abnormalities with none of the amnio/CVS testing risks

sorry for the derail - I get all geeky about science stuff and forget myself

[Vex]

Thanks for posting that, Lilah. I am also impressed by the awesome truthiness in the post. Very politely worded, though.

[meda]

not sure how pertinent this is to this thread but I find it to be a major medical turning point (and fascinating to boot): cell free fetal dna testing will soon be possible (right now doing only certain genetic diseases - depends where you live in the world - much more established in Europe/England compared to Canada) to sequence the fetal genome by doing a blood test on the mom (in the first trimester - so if termination is elected it can be done early on) - so it will be possible to test for multiple genetic abnormalities with none of the amnio/CVS testing risks

Just to continue the off topic a bit: I was offered this by the geneticist we met with about prenatal testing (Im in the US, it's not covered by most insurance plans yet) He felt that it had great potential, but as you said, it's limited to certain diseases right now. In my case there was also increased risk of a false positive, so we just went with the amnio. I think it looks like a really positive, less invasive option for women.

[browngrl]

Just to continue the off topic a bit: I was offered this by the geneticist we met with about prenatal testing (Im in the US, it's not covered by most insurance plans yet) He felt that it had great potential, but as you said, it's limited to certain diseases right now. In my case there was also increased risk of a false positive, so we just went with the amnio. I think it looks like a really positive, less invasive option for women.

I just went to a conference on this very topic and the false positive rate is absurdly low - so low that I've pulled up some papers (not read yet though) to see if I believe it - time will tell but man oh man this is cool stuff

[lilith]

I just went to a conference on this very topic and the false positive rate is absurdly low - so low that I've pulled up some papers (not read yet though) to see if I believe it - time will tell but man oh man this is cool stuff

That's wonderful, I've had an amnio and they aren't fun.

[meda]

I just went to a conference on this very topic and the false positive rate is absurdly low - so low that I've pulled up some papers (not read yet though) to see if I believe it - time will tell but man oh man this is cool stuff

The false positive is very low, I had a weird situation with a vanishing twin at 9 weeks, so apparently that can mess with the results.

[2xx1xy1JD]

I may very well be preaching to the choir but...women who have suffered a miscarriage 1-usually already know that and 2-really don't need to hear that.

I've watched in horror when people say such things to women who have just lost a pregnancy and...it's rather like being in a funeral when someone goes up to the grieving spouse and says "well, Jesus needed him in heaven". It's just salt in a wound.

Thank you.

When I had my first miscarriage, I actually didn't realize that many result from chromosomal problems (ie. the chromosomes failed to divide and replicate properly, which is different from an issue with a defective recessive gene like CF) until I did some research. It didn't make the loss any less painful. The only upshot was that some of my "irrational" guilt went away. [i put "irrational" in quotes because while I knew perfectly well that I had done everything that I could to have a healthy pregnancy, there was a constant societal message that pregnant women had to constantly be on guard against screwing up their pregnancy, but in 1998, before everyone was online, there was very little public discussion of miscarriage. It was like a shameful secret. In that climate, I had no idea that it was possible for a healthy 26 yr old woman who had followed all the rules to still end up with a miscarriage that was totally out of my control.]

[desertvixen]

Still no reply from Abigail on Brenda's comment.

Jennie, however, thinks the commenters are big meanies:

I continue to feel the need to deflect these horrible comments. They are brutal, attempting to tear your innermost being apart from the tiny bit they know of you. Using objectively cruel terms such as: narcissistic, self-obsessed, rageful, hypocrite, self-aggrandizing, drama queen.

I don't let anyone talk to me that way. Though couched in seemingly prayerful, gentle language, it is abusive. An appropriate way to call out a problem is to describe the offensive action. It is never okay to assume you know the innerworkings of another. Good therapists know not to do this and so do those who really love us.

My next thought is: you must be doing something really right to engender this much(spiritual?) attack.

As a trained therapist, who has actually diagnosed clients with narcissism, I don't see any of that in play here.

[Shirley MacLaine]

An appropriate way to call out a problem is to describe the offensive action.

Which... was exactly what happened!

[Jinger Jar]

Still no reply from Abigail on Brenda's comment.

Jennie, however, thinks the commenters are big meanies:

If Jennie holds any kind of professional licensure in clinical psychology, I will eat my computer.

[slickcat79]

If Jennie holds any kind of professional licensure in clinical psychology, I will eat my computer.

[LilMissMetaphor]

It is never okay to assume you know the innerworkings of another.

Well, unless you're a colonoscopist, I guess.

[chaotic life]

As a trained therapist, she would lose her license for diagnosing people. Only a DOCTOR can make an actual diagnosis, Psychiatrist or Psychologist but niether would refer to themselveas as a "trained therapist." Geesh, she doesn't even say she's a licensed theapist, so she's probably of the caliber of a lay leader with Marriage Builders or Celebrate Recovery.

[Jinger Jar]

As a trained therapist, she would lose her license for diagnosing people. Only a DOCTOR can make an actual diagnosis, Psychiatrist or Psychologist but niether would refer to themselveas as a "trained therapist." Geesh, she doesn't even say she's a licensed theapist, so she's probably of the caliber of a lay leader with Marriage Builders or Celebrate Recovery.

MFTs and LCSWs can diagnose Axis I disorders, but they cannot diagnose Axis II disorders. But I doubt Jennie knows that. ;)

[OkToBeTakei]

MFTs and LCSWs can diagnose Axis I disorders, but they cannot diagnose Axis II disorders. But I doubt Jennie knows that. ;)

If you require a therapist of any sort and seek it out yourself after possibly going down the normal route of conventional medicine ie. Your GP or another practitioner. WHICH is not always I admit the best way to seek therapy as they are in no way always knowledgable or sympathetic. BUT if failing that you cannot find an accredited therapist. You then find one who went online or had an urge to reach out and do some kind of 8 week counselling course in order to 'help' and charge money for it. Chances are you are looking for someone to affirm what you think is wrong with you. This is called a self fulfilling prophecy and people love to charge you mega for that.

[desertvixen]

Still no answer... However, Little JoAnn (who I believe sent them a big care package of food after the infamous "swim meet splurge" = "total poverty and bare cupboards" incident) also thinks we are big meanies. I'm in bold, she's in delusion:

I second what Jennie said. If I had time to look into why the heck they have responded/commented the way they are about your posts, I am sure I would find the wound that is making them lash out, so.

Most of us call it 'rationality'.

But, I don't have this kind of time right now so all I can say to them is: stop.go.surf on the internet somewhere else and find another blog that doesn't make you think/react in such a crazied, judgemental way.

Abby's our girl...and her blog is truly unique and inspiring...

Your feedback on the otherhand sounds bizarre and dare I say narcissistic. Go away big green monsters...you guys are scary Catholic gals who really need to do a bit of volunteer work with the poor and vulnerable. You sound like you are living way too much in your heads and trying to make your overthinking reality something others want to hear about.

I don't know that Brenda is Catholic...

The truth is we don't want to hear about your analysis of Abigail...we want to hear about Abigail's journey.

Next time any of you crazies post, I am ignoring your feedback. You guys are stinkers, pure and simple.

Awwww...

Love doesn't gush forth from your blog comments at all.

Meanwhile love gushes forth from Abigail even when she isn't trying.

[Rowan]

Still no answer... However, Little JoAnn (who I believe sent them a big care package of food after the infamous "swim meet splurge" = "total poverty and bare cupboards" incident) also thinks we are big meanies. I'm in bold, she's in delusion:

She might want to get that looked at. :whistle: