Joy & Austin 33: Pregnant Again

[JDuggs]

Joy posted that she (or Austin) has to give herself blood thinner injections. I didn’t watch her video for more details.

[Mama Mia]

53 minutes ago, JDuggs said:

Joy posted that she (or Austin) has to give herself blood thinner injections. I didn’t watch her video for more details.

Is this a recent condition that has become more common? Used to be unknown? There seem to be so many young pregnant women with blood disorders requiring treatment - but had never heard of it until a few years ago.  Has this always been a common cause of miscarriage and stillbirth, but they just didn’t know until recently? 

[justmy2cents]

Joy said that they didn’t check before since there was no reason to but now looking back this may have factored in the loss of Annabelle.  She has 2 blood clotting disorders.

[Mama Mia]

12 minutes ago, justmy2cents said:

Joy said that they didn’t check before since there was no reason to but now looking back this may have factored in the loss of Annabelle.  She has 2 blood clotting disorders.

I felt for her in that part of the video. It looked like finding all of this out, and the severity, was really hitting her. I have an acquaintance who lost a full-term baby recently, they didn’t know why and then testing revealed a blood clotting disorder. Tragic. Is this something they may start testing routinely for in the future? It seems like that could be really useful. Hope I’m not mis-stepping here.

[Giraffe]

19 minutes ago, Mama Mia said:

Is this something they may start testing routinely for in the future? It seems like that could be really useful.

It certainly sounds like it should be routine!

[Coconut Flan]

I have clotting problems that resulted in multiple miscarriages.  One of my daughters had two miscarriages and that's when we learned that ten years ago the standard of care was not to test until three consecutive miscarriages.  Based on my history, my daughter was able to get tested after two.  When Erin Bates Paine was first married, they didn't test until after three miscarriages.  It seemed overly cruel to wait that long, but if they test too early they can end up with more pregnant people on blood thinners than need to be.  Not everyone with the clotting disorders has the severity to be a major problem.

[SassyPants]

2 hours ago, Mama Mia said:

Is this a recent condition that has become more common? Used to be unknown? There seem to be so many young pregnant women with blood disorders requiring treatment - but had never heard of it until a few years ago.  Has this always been a common cause of miscarriage and stillbirth, but they just didn’t know until recently? 

I worked with someone 30 years ago who was diagnosed and needed blood thinners to maintain a pregnancy. She was diagnosed after having had 1 healthy baby. When they tried after that child she had 5 miscarriages and 1 stillborn before she was diagnosed. She went on to have 1 more healthy baby.

[QuiverFullofBooks]

It’s so obnoxious that they don’t test routinely, even at fertility clinics, and even for older women who don’t have time to have a couple of miscarriages before they get around to it.

[Keys]

3 hours ago, QuiverFullofBooks said:

It’s so obnoxious that they don’t test routinely, even at fertility clinics, and even for older women who don’t have time to have a couple of miscarriages before they get around to it.

I’m not sure what disorder she’s been diagnosed with (and not sure if the Bates girls have said the name of theirs either?), but there are several blood clotting disorders that can increase the chance of miscarriage, so it would be quite difficult and costly to test for all of them. One of them, APS, for instance, requires multiple steps in making a diagnosis (including a test where the blood is mixed with a snake venom - for real! This takes a while to come back and is quite costly. Then, you need 2 confirmatory tests after that, 12 weeks apart). I live in a country where the healthcare system is publicly funded, so unfortunately I can’t see the multitude of clotting disorder tests being implemented routinely for everyone despite how devastating the consequences can be for the unfortunate small percentage that are affected. 😞 With that being said, often there is a known family history with these things, which can help a lot in terms of testing and treatment.

As an aside, I am not a radiologist or an OBGYN, but I have a medical background and remember when Joy posted the ultrasound pic of Annabel. I remember thinking the photo looked abnormal with a very thick nuchal translucency, which is a marker for genetic abnormalities. I think there may have been a discussion about it here (or maybe Reddit? I’m not sure now). Take with a grain of salt because I am not an expert by any means and multiple images are taken with a nuchal translucency scan. And completely regardless of the reason, a loss is a loss and is entirely heartbreaking and unfair. 

[Cam]

14 hours ago, Mama Mia said:

I felt for her in that part of the video. It looked like finding all of this out, and the severity, was really hitting her. 

I cannot imagine the difficulty of learning this while pregnant, but I don’t understand the need for the immediacy of telling a viewing public. I am one who needs time to absorb and process serious matters on a personal and private level before sharing the information with others. 

Edited November 6, 2022 by Cam

[Coconut Flan]

Joy may have been quite relieved to have something to blame for Annabel's death.  It's far too easy to blame yourself and in fundie circles probably even easier.

Edited November 6, 2022 by Coconut Flan

[SassyPants]

I just find it interesting that the Duggar and Bates G2 females have had so many reproductive issues while their mothers each had 19 kids. Yes, both woman had some issues, especially with the later in life pregnancies (not uncommon by the way), but they each ended up with 19, seemingly healthy children. It really is unfathomable. All the married female Duggar (née) have had a loss, plus between the families there are multiple woman with a clotting disorder.

[Coconut Flan]

The Bates' daughters clotting disorders are not really a surprise.  Gil's sister has at least one clotting disorder.

[Idlewild]

It does seem like the 4 married Duggar sisters are ramping up their SM presence to create more content for their monetised efforts. Maybe they realise the JB gravy train is well and truly over (it has been for a while for Jill) and despite what their patriarchal belief system says, their husbands don’t make enough for the lifestyle they enjoy. 
If Joy feels the need to share, for whatever reason, I’m glad she’s showing science and medicine are the solution.

[AprilQuilt]

3 hours ago, SassyPants said:

I just find it interesting that the Duggar and Bates G2 females have had so many reproductive issues while their mothers each had 19 kids. Yes, both woman had some issues, especially with the later in life pregnancies (not uncommon by the way), but they each ended up with 19, seemingly healthy children. It really is unfathomable. All the married female Duggar (née) have had a loss, plus between the families there are multiple woman with a clotting disorder.

But both their mothers are total outliers in terms of fertility. Plus they've contributed only 50% of the daughters' genes, so not all the daughters will be 'built' like them necessarily. The Bates and Duggar girls probably more accurately represent the sort of reproductive issues people may typically face - 1 in 4 pregnancies ends in miscarriage, for example, so one would expect there to be losses, and given that clotting disorders are genetic, if one daughter has it then others are likely to as well. Michelle and Kelly are remarkable for their consistent close spacing and few losses (I know K had more than M) over decades.

Also worth bearing in mind that the Bates and Duggar girls tend to marry young and try for babies straight away, which a large proportion of young women these days don't prioritise. So any fertility issues are much more likely to be investigated or discovered compared to a population of women who don't try to conceive until their 30s, or who consider their families complete after one or two children. These people are always trying for babies and are less likely to limit their family size, and so if they have fertility problems they tend to notice them quite quickly. If you're not trying you're unlikely to find out about problems.

[indianabones]

20 hours ago, Keys said:

I am not a radiologist or an OBGYN, but I have a medical background and remember when Joy posted the ultrasound pic of Annabel. I remember thinking the photo looked abnormal with a very thick nuchal translucency, which is a marker for genetic abnormalities. I think there may have been a discussion about it here (or maybe Reddit? I’m not sure now).

There were at least two sonographers who commented on that photo on Instagram saying the same thing. I think we did discuss it here.

[Keys]

10 hours ago, AprilQuilt said:

But both their mothers are total outliers in terms of fertility. Plus they've contributed only 50% of the daughters' genes, so not all the daughters will be 'built' like them necessarily. The Bates and Duggar girls probably more accurately represent the sort of reproductive issues people may typically face - 1 in 4 pregnancies ends in miscarriage, for example, so one would expect there to be losses, and given that clotting disorders are genetic, if one daughter has it then others are likely to as well. Michelle and Kelly are remarkable for their consistent close spacing and few losses (I know K had more than M) over decades.

Also worth bearing in mind that the Bates and Duggar girls tend to marry young and try for babies straight away, which a large proportion of young women these days don't prioritise. So any fertility issues are much more likely to be investigated or discovered compared to a population of women who don't try to conceive until their 30s, or who consider their families complete after one or two children. These people are always trying for babies and are less likely to limit their family size, and so if they have fertility problems they tend to notice them quite quickly. If you're not trying you're unlikely to find out about problems.

Yes, I agree with everything you’ve said, and especially the bolded - the risk of various pregnancy complications increases with short inter-pregnancy intervals, so it’s quite remarkable that they didn’t have more issues with SO many pregnancies back to back like that. 

 

4 hours ago, indianabones said:

There were at least two sonographers who commented on that photo on Instagram saying the same thing. I think we did discuss it here.

Interesting. I was just a lurker here back then and do vaguely remember that conversation. I know not everyone opts for the genetic testing/NT scan in pregnancy, and that they may have gone to a “just for fun” ultrasound place for that scan and it may not have part of her actual prenatal care or reviewed by a radiologist or OBGYN. We don’t have those types of places here, so I’m not sure if the techs there would say if they saw something abnormal? I feel for them, as I think sometimes having a definitive answer allows for more closure, but that’s of course not always possible. 

[Smash!]

On 10/28/2022 at 4:18 AM, Cults-r-us said:

Looks like the Chewelry might be cheaper at Amazon.

I love all the knowledge of FJ! I might just have found a substitute for biting my inner lips 😁

[Thumper]

I was tested for it after 2 miscarriages. Even with insurance it was still a solid grand worth of bloodwork. (They did other tests too like checking my vitamin D and thyroid).

[CanadianMamam]

I had two miscarriages in 4 months periods after the second one, I had to go to the ER for complications and they did some testing and found out I had a silent infection that was causing the miscarriages. But there was no reason to test ahead of time. 

[neuroticcat]

I have Factor V Leiden and MTHFR mutation (which are both blood clotting disorders) and have to do injections in pregnancy. I had one miscarriage but a close relative had an unexplained serious DVT. For that reason, I was on bloodthinners for all but one of my pregnancies. Without the family history, it would have required 3+ miscarriages to get tested. There is so much more known about the disorders than there was even when I was first diagnosed 15 years ago. I also think the internet is the great equalizer. Women in pregnancy groups learn and educate their doctors, TBH.

I once asked my OB why it wasn't just part of standard prenatal bloodwork. She said $ (of course) but also because it's not like being on blood thinners are without risk during pregnancy. There are bleeding complications, osteoporosis risks, and it complicates delivery. Not all women with blood clotting disorders will experience pregnancy loss (sometimes it's different factors combined or risk increases with age) and some blood clotting disorders are relatively common (for instance mine in US is 1 in 20 Caucasians and 1 in 100 African Americans) - so they don't necessarily want to just default to thinners. However, it sucks that the only rubric is multiple losses. 

My guess with the Bates/Duggars is that the women inherited the mutations from their fathers or their mutations were such that whatever contributing factors the younger generation are experiencing weren't present (an additional gene mutations, for instance). 

 

[Bluebirdbluebell]

So far Joy is the only Duggar to have these kinds of issues that we know of.  There are fives Bates women (Michael, Erin, Tori, Carlin, and Josie) with the family clotting disorder, but Joy is the only of her sisters with it so far. 

[just_ordinary]

Additionally, if you experience early miscarriages it’s not exactly easy to find out what the actual reason was. Early losses are shockingly common and only since we test earlier even know about them so often. I got two babes and two losses but it’s not clear if my clotting disorder has anything to do with it and if the blood thinners actually helped or not. I got on them immediately because of my family history and it was really more for my own benefit. Science never sleeps though and I think now they would try me without a bit longer.

And yes, testing just because is a bit of a slippery slope. I can think of a couple more tests that everyone should have regularly (and I don’t mean every five years) because we could detect so much which would benefit from early detection and treatment. What should be incorporated and what not?

Also here it was a nightmare getting a hold of the blood thinners provided through your insurance (they often pay only from selected Pharma companies and even in those contexts there are sometimes restrictions which package / dosage combination you can get. For example-3x10 is ok but not 1x10 +1x20 for one dosage but it’s different for a higher dosage formula and again different if it’s another brand), it was almost a full time job to get it in time with multiple re-writings of the prescriptions from one brand to another and back. There was a massive shortage in the pandemic, don’t know if that’s still the case. So big amounts got scooped up by hospitals or held back for them or certain conditions were people’s life dependent on getting them.

[neuroticcat]

Oh my goodness, yes. Getting the prescriptions was a nightmare. When I first was diagnosed it was before the medicine was generic, and it was something like 1K a month for the injections. I was fortunate that I could use HSA to pay for it. 

Later, it was available generic, but a huge pain to get it - they only release it in small amounts so you have to constantly call in refills. Sometimes it's only mail in with refrigerated delivery. It was a pain.

[OyToTheVey]

On 11/9/2022 at 5:51 AM, just_ordinary said:

Additionally, if you experience early miscarriages it’s not exactly easy to find out what the actual reason was. Early losses are shockingly common and only since we test earlier even know about them so often. I got two babes and two losses but it’s not clear if my clotting disorder has anything to do with it and if the blood thinners actually helped or not. I got on them immediately because of my family history and it was really more for my own benefit. Science never sleeps though and I think now they would try me without a bit longer.

And yes, testing just because is a bit of a slippery slope. I can think of a couple more tests that everyone should have regularly (and I don’t mean every five years) because we could detect so much which would benefit from early detection and treatment. What should be incorporated and what not?

Also here it was a nightmare getting a hold of the blood thinners provided through your insurance (they often pay only from selected Pharma companies and even in those contexts there are sometimes restrictions which package / dosage combination you can get. For example-3x10 is ok but not 1x10 +1x20 for one dosage but it’s different for a higher dosage formula and again different if it’s another brand), it was almost a full time job to get it in time with multiple re-writings of the prescriptions from one brand to another and back. There was a massive shortage in the pandemic, don’t know if that’s still the case. So big amounts got scooped up by hospitals or held back for them or certain conditions were people’s life dependent on getting them.

I work in a pharma related industry. I always tell people to go to a doctor that has affliations with a giant hospital. It really helps when there's shortages or need prior approvals from insurance.