"Open to life, even with [CF]" - Catholic mommy blog

[Stephanie66]

She's against socialized medicine, a very interesting position, considering Rees will be kicked off of his parents' insurance in 8 years, no matter what. (And, prior to Obamacare/ACA, would have been kicked off at 21, no matter what, and...private insurance? Yeah, right.)

She is concerned that socialized medicine won't cover the very expensive medication (that he is now getting in a trial phase, so apparently it isn't covered by her insurance now) that her kids may benefit from. So, to sum it up, the entire nation should be deprived health care because potentially, her two children might not be able to afford medication, not yet available, otherwise.

I understand looking out for your kids first and foremost. I also believe that society at large SHOULD pay for her kids' medical bills, EVEN THOUGH she chose to roll the dice and risked kids who would have expensive medical bills. (Well, she probably didn't know with Rees, and got lucky until the baby.) I believe this because I want her kids to have the best lives possible and, like her, I believe their lives are worth living. And I am not a Christian.

ETA: I actually agree with my crazy-ass Congresswoman Michele Bachmann on one thing. I do agree that insurance companies should be allowed to make agreements to cover dependent children up to whatever age they want. If they agree to cover kids until they are 45, they should be able to do that. Insurance laws actually LIMIT coverage in this regard. Since it is a contract, they should be able to do (in this regard) whatever they want.

[chaotic life]

A lot of CF parents are concerned about socialized medicine not covering the experimental medications and Kaladeyco. They rarely understand that ACA is NOT socialized medicine. That said, the UK has steadfastly refused to cover Kaladeyco. Their review boards have looked carefully and the impact Kaladeyco has had on FEV has NOT been proven to increase longevity. However, since it was passed so quickly as an orphan drug, we really don't know the risks of it yet. The first EARLY problem is that they are finding that young children on Kaladeyco are developing CATARACTS.

I don't know what my opinion on Kaladeyco is. I'm not convinced it alone is the miracle people are holding out for it to be, and I think there is a big mistake that most of the research is now channeled this direction and not into more maintenance medications that are needed TODAY. I don't think the UK is necessarily wrong in their position either though. Kaladeyco alone is only proven to make much difference in ONE very rare mutation of CF. It's already well established that it needs to be in combination with something else if there's any chance that a medical halt to the disease progression is going to make any difference at all.

[Curious]

There's a comment from someone who has the goal of bringing down FJ. She is totally consulting a lawyer to sue us for copyright infringement.

northerncffamily.blogspot.ca/2013/10/autumn-wrap.html?m=1

That's just HGR spreading her anal pain all over the internet since we caught her breaking the rules here and took action. :roll:

[Stephanie66]

A lot of CF parents are concerned about socialized medicine not covering the experimental medications and Kaladeyco. They rarely understand that ACA is NOT socialized medicine. That said, the UK has steadfastly refused to cover Kaladeyco. Their review boards have looked carefully and the impact Kaladeyco has had on FEV has NOT been proven to increase longevity. However, since it was passed so quickly as an orphan drug, we really don't know the risks of it yet. The first EARLY problem is that they are finding that young children on Kaladeyco are developing CATARACTS.

I don't know what my opinion on Kaladeyco is. I'm not convinced it alone is the miracle people are holding out for it to be, and I think there is a big mistake that most of the research is now channeled this direction and not into more maintenance medications that are needed TODAY. I don't think the UK is necessarily wrong in their position either though. Kaladeyco alone is only proven to make much difference in ONE very rare mutation of CF. It's already well established that it needs to be in combination with something else if there's any chance that a medical halt to the disease progression is going to make any difference at all.

But Obamacare/ACA benefits them. They can't keep their kids on their insurance forever, and eventually, they will have to buy their own or be on an employer's health plan. BECAUSE of ACA, her children's CF WILL be covered, period.

The drugs aren't covered by any insurance at this point, and there is no guarantee they will be covered by private insurance.

I reread her comment...she is afraid researchers won't be paid if we go to socialized medicine. I don't know where she gets this from? (Along with that they won't cover Kaladeyco) If there is money to be made, there will be research done, publicly funded or not. Research is slow going...it takes a long time. Hopefully, by the time her daughter is Rees' age, it will be more treatable.

And I hope they don't have any more. They obviously love their kids and they seem like great parents, but sometimes great parents step outside of themselves and look at it from their kids' perspective. Yes, I am sure their kids were glad they were born. And yes, I am sure their kids with CF would rather have not been born with CF.

[pikapika]

Is your Hispanic heritage connected to New Mexico? The reason I ask is because some Hispanics in New Mexico have French Canadian heritage due to a period in which French trappers were marrying Hispanic women in New Mexico.

Hi lilwriter, no it is not, I was born and raised in Mexico. Interestingly in my moms region there was a legend of French soldiers hiding in the region after they lost the Cinco de Mayo battle and that they settled there after not finding their battalions and not being able to return to France. So I guess I am proof it was not a legend!

[wtylcf]

I am distantly related to a Quiverfull family of 10 children, of whom 3 have CF. I follow some of the family members on facebook. The eldest CF child, a woman in her mid 20s, just gave birth a few weeks ago - at home, WITH NO MIDWIFE. (ETA - not sure how I accidentally submitted at this point). Obviously she got tons of shit from doctors when she showed up at the hospital, but was completely belligerent about her actions. It's a crazy amount of risk, in my opinion. Complications happen even in healthy pregnancies, let alone in someone with a degenerative disease. But she was very, very proud of her actions and was lucky enough that things went smoothly. It's odd that she seems open to other progressive ideas - for example, supporting gay marriage, and talking down "female modesty" as BS in terms of a godly aspiration. But when it comes to medical treatments, she's 100% "the body is meant to give birth," and "resist the establishment" and "don't listen to medical professionals if you don't want to." Yikes.

The family has made a big deal about trying to treat CF with alternative therapies in addition to doing whatever doctors deem medically necessary for their kids. Their main goal is trying to avoid reaching the point of hospitalization, because in hospitals, the risk of catching another virus or infection is greater. (Ultimately, this is something that is out of the patient's control - if you have awful pneumonia, you're not going to ride it out at home if you have CF, right?) While I really don't agree with their take on this in general, these young women are ultimately responsible for how they feel they should manage their own diseases. It could be that they are simply very lucky (probably), or have a less severe mutation, but all 3 are in their early to mid 20s and between them, only one has been hospitalized in the past two years. I hope their good health continues; that's all I can say.

[Jana814]

I am distantly related to a Quiverfull family of 10 children, of whom 3 have CF. I follow some of the family members on facebook. The eldest CF child, a woman in her early 20s, just gave birth a few weeks ago - at home, WITH NO MIDWIFE.

Oh my!! I have no words!!

[Peas n carrots]

When Rees’ healing did not occur, the parents were led to believe that something was wrong with their prayers, their faith, their worship, or even with their trust in God. The leaders of the sect convinced the distraught couple they must be harboring a “secret sin†and that they “didn’t love God enough, didn’t love others enough, didn’t sing enough, and didn’t speak in tongues enough.â€

Ugh, so they change one brand of fundie Christianity for another to fit their lives? Although I still think Catholicism is a modicum better than fundie Pentecostal (every time I think of Pentecostals now I imagine Xgay Greg rolling around in the aisles of the Church say "shambala lala")

“No one is guaranteed anything in life,†they say. They tell people that CF is manageable and that there are ways to keep CF kids healthy.

Ok, I call bullshit here. CF is NEVER a picnic from what I've learned here on FJ. They make it sound like it's no biggie, like the kid has a cold.

They also point out that a child with health problems, like a Tiny Tim, brings out the best in people. “They have ‘something’ you can’t put your finger on. They tend to be wiser. They charge into life, full-force. They make the world a better place and they want to be here.â€

My eyes nearly rolled out of my head reading this one. HELLO, your child is a person who has hopes, fears, great qualities and flaws. I'm sure your child would much, much rather be healthy than be a martyr.

You think HGR would quit being so butthurt. She was agreed to the TOS and violated them. Most people move on with their lives. I'm just annoyed that she is making up shit as I don't think anyone here was making fun of this family.

[nelliebelle1197]

Agreed. I've got an autoimmune disease that has a possible genetic component (I have zero family history, however, so...luck of the draw, I guess?) and it's classified as moderate/severe. According to the literature, I've got a 10% chance of passing it on to future offspring. So, while I was previously planning on definitely having kids, I've got to keep the autoimmune disease in mind. (although if my future kid has it, hypothetically I'd be able to spot the early symptoms better maybe?)

If it makes you feel any better, my mom is a walking autoimmune disease (she has 5). I just had a complete workup for them and the specialist says literate now really puts the inheritable risks overall at 5%....

[lilwriter85]

Hi lilwriter, no it is not, I was born and raised in Mexico. Interestingly in my moms region there was a legend of French soldiers hiding in the region after they lost the Cinco de Mayo battle and that they settled there after not finding their battalions and not being able to return to France. So I guess I am proof it was not a legend!

Oh ok that is interesting. Several years back, there was report about some Hispanics in New Mexico having a genetic mutation linked to their French heritage.

[keepercjr]

I am distantly related to a Quiverfull family of 10 children, of whom 3 have CF. I follow some of the family members on facebook. The eldest CF child, a woman in her mid 20s, just gave birth a few weeks ago - at home, WITH NO MIDWIFE. (ETA - not sure how I accidentally submitted at this point). Obviously she got tons of shit from doctors when she showed up at the hospital, but was completely belligerent about her actions. It's a crazy amount of risk, in my opinion. Complications happen even in healthy pregnancies, let alone in someone with a degenerative disease. But she was very, very proud of her actions and was lucky enough that things went smoothly. It's odd that she seems open to other progressive ideas - for example, supporting gay marriage, and talking down "female modesty" as BS in terms of a godly aspiration. But when it comes to medical treatments, she's 100% "the body is meant to give birth," and "resist the establishment" and "don't listen to medical professionals if you don't want to." Yikes.

The family has made a big deal about trying to treat CF with alternative therapies in addition to doing whatever doctors deem medically necessary for their kids. Their main goal is trying to avoid reaching the point of hospitalization, because in hospitals, the risk of catching another virus or infection is greater. (Ultimately, this is something that is out of the patient's control - if you have awful pneumonia, you're not going to ride it out at home if you have CF, right?) While I really don't agree with their take on this in general, these young women are ultimately responsible for how they feel they should manage their own diseases. It could be that they are simply very lucky (probably), or have a less severe mutation, but all 3 are in their early to mid 20s and between them, only one has been hospitalized in the past two years. I hope their good health continues; that's all I can say.

I have CF and had a home birth (midwife assisted) with my 2nd child. From talking to other mothers with CF it seems to be (as it was in my case) that CF rarely if at all impacts *birth* (pregnancy can be another story though many of us do fine). So her having a home birth is no biggie in my mind but doing it alone is a bit of a question mark. As for going in the hospital - many people with CF elect to do home IVs. If we are not *too* sick or have a partner or parent who can take care of us then we can just stay at home and get the same drugs. If you are super sick or your you only have medicare (which does not cover home IVs) then you go in the hospital (or maybe you just want to be in the hospital instead of at home since sometimes we can get more rest in the hospital especially if there are lots of responsibilities at home). Right now I am not feeling too well and even had my husband stay home from work the other day to help take care of the kids and home so I could rest. I have an appointment this coming week with my CF docs and fully expect some kind of antibiotic, either oral or IV to be prescribed. But unless I am extremely ill I am not going anywhere near a hospital!

[PurpleSheepleEater]

I know of a family who had more children after having a CF child. It makes no sense to me at all, definitely not a decision I could make. If I had a horrible genetic issue I wouldn't have children of my own either. I know others see it differently but to me it's just passing heartache down to some future generation.

The family in the OP, with the "suffering for God" mentality. Just so wrong to make that determination for your child! Go on and make yourself suffer all you want but to knowingly create a life that will be full of illness and pain? I just don't get it.

[mockingbird]

I agree that this couple is being irresponsible, but I'm just curious about where the "not having kids because of genetic reason" lines get drawn.

Well, I definitely think that decision belongs to the parents... what bothers me about this family is like so many others, how cavalier they seem about CF. Keepercjr's parents' decision to have another kid, on the other hand, seems to have been made after a lot of thought and with the full understanding of the risks. I can see how it would be worth it to try for another child fully understanding the risks... but this family just keeping going without seemingly any thought at all to their future children's health with their comments about how "CF is no big deal!!11!" and "Our CF children are special angels who bring wisdom to the world!!1!" is what made me post the blog here.

Chaotic life, I think you make a great point about still having some focus on "management" drugs while we wait for the miracle cures. I think that would also be a wise way to go... we cannot forget about everyone still waiting while we take the time to develop the Miracle Drug. Also, is there even a way to prove Kalydeco or any drug in the orphan drug pathway improves longevity yet? It's all a big risk, right, because it probably hasn't been out long enough to know that?

Any time you push something out early there is going to be a huge chance of unknown risks and I'm really sorry to hear Kalydeco has been causing something as bad as cataracts. I was one of the first people to survive long-term after a bone marrow transplant and while there in that situation they could predict some of the main risks, I have had a lot of very severe late side effects. I'm part of a long-term study and I'm glad that data from my experience has been used to improve bone marrow transplants... people who get them now do not have as many risks as I did, although they are still very dangerous (eta: in that you are still at a huge risk of infection while waiting for the new bone marrow/stem cells to "take" and there's not much you can do to prevent that besides isolation/infection control). Anyway, based on that experience I don't think it was wrong to push it through the orphan drug pipeline as sometimes there are few options for life-saving treatment and it does become worth that huge risk - as long as patients/parents fully understand that they are heading into the "unknown". I can see where the unknown risks has made the UK seriously hedge on this drug - but I actually do know someone pretty well who is taking Kalydeco and seeing them do so well, I don't see why they shouldn't have the opportunity to try it. (I haven't really talked about this because I don't think it's my place to share this person's story... they do have the rare mutation that Kalydeco is specific for.) I know it's hard to get "designer drugs" covered, in general, though.

[wtylcf]

I have CF and had a home birth (midwife assisted) with my 2nd child. From talking to other mothers with CF it seems to be (as it was in my case) that CF rarely if at all impacts *birth* (pregnancy can be another story though many of us do fine). So her having a home birth is no biggie in my mind but doing it alone is a bit of a question mark. As for going in the hospital - many people with CF elect to do home IVs. If we are not *too* sick or have a partner or parent who can take care of us then we can just stay at home and get the same drugs. If you are super sick or your you only have medicare (which does not cover home IVs) then you go in the hospital (or maybe you just want to be in the hospital instead of at home since sometimes we can get more rest in the hospital especially if there are lots of responsibilities at home). Right now I am not feeling too well and even had my husband stay home from work the other day to help take care of the kids and home so I could rest. I have an appointment this coming week with my CF docs and fully expect some kind of antibiotic, either oral or IV to be prescribed. But unless I am extremely ill I am not going anywhere near a hospital!

Your take on the matter sounds completely reasonable. I wasn't careful enough to say that my disagreement with the family's attitude was towards their overall anti-establishment take on medical advice, not their opinions on hospital stays. I completely agree that that aspect seems totally common-sense. Of course, if there's a method of receiving the same care you'd get in the hospital that you can safely administer at home, it's way better to go that route and avoid the risk of catching something else in the hospital. I have more of a problem with the fact that the woman skipped out of her induction appointment and then gave birth at home, unassisted. Eeep. My guess was that she was not allowed to have a midwife by her GP because it was considered too risky; she was meeting with a high-risk pregnancy specialist throughout her pregnancy if I recall correctly. That said, it's really not my place to tell her how to live her life or what's best for her own health. I do realize that, had I grown up with this medical condition, and had I experienced great results by avoiding hospitals, not complying with doctor's orders, and taking a whack of herbal supplements, perhaps I'd have a contrary opinion on listening to doctors. (I'm referring to my distant relative here, not you, keepercjr, just for the record :)).

[lilwriter85]

That has to be HomeGirlRuby. We usually don't snark on children here. And most people here don't actually comment on the blogs.

There is occasional snark on kids here. But I think sometimes certain comments about children are viewed as snark by others. I remember in a Zsu thread, there were comments about the boys' suits being too big and people wondered why Zsu doesn't fix them up a bit and I remember poster was saying that we were snarking on the kids.

I agree, most people here don't comment on the blogs and sometimes when FJers comment on blogs the bloggers don't let them go through. With Lori "Nitwit" Alexander, she had blog entries that get historical details wrong and she will not allow comments correcting her.

[Kailash]

I honestly have no clue how parents can be so cavalier about their kids having to go through such awful health problems. It's hard enough when your kid falls down and scrapes a knee and cries, let alone having to go through constant major medical crises. I couldn't do it to my kid. I couldn't. If I knew that I was a carrier for anything major that could be passed on, we'd go the IVF route and select for the embryos who had no chance of carrying on whatever we didn't want passed. Because I couldn't live with myself if I knowingly played Russian Roulette with my children's health and futures.

And as for people who are like, "Oh, it's in God's hands, blah blah blah," isn't it strange how God seems to pass these things on in a Mendelian fashion? That God plays by the rules of statistics? No one sees any bit of weirdness in that at all, or...?

I agree. There is no way I would willingly have a child knowing that they would suffer a terrible disease. I couldn't do it. It seems very selfish to me for this family to keep having children. How are they able to attend to the needs of all of them especially when 2 have serious diseases?

A bit off topic perhaps, but related since it illustrates my point: Last night a child I was babysitting vomited all over himself in the car and my daughter freaked out. When I stopped the car she got out and refused to come anywhere near the car. (We were in a fast food parking lot.) Since I wouldn't leave the sick child, she was left to tend to herself the entire time I cleaned up the little boy and the car. I ended up calling my sister to come pick up my daughter because she wouldn't get back in the car. (She wouldn't get within 3 car widths of it.) I felt completely overwhelmed and like a mom failure because it was impossible for me to tend to both kids at once.

This family has 2 kids with serious diseases, and 2 parents. If each sick child gets one parent to themselves, it leaves no parent for the other kids. If one parent stays with the healthy child, only one sick child has a parent present. And it's entirely possible they'll have another child with CF. Completely selfish and unacceptable in my opinion.

[halfheartedheroine]

If it makes you feel any better, my mom is a walking autoimmune disease (she has 5). I just had a complete workup for them and the specialist says literate now really puts the inheritable risks overall at 5%....

That does, actually, thank you! Hope you and your mom are doing well

[Stephanie66]

I wonder if a part of her went into some sort of "God loves me and will not allow another child to get CF" denial of sorts when they had FIVE in a row without the disease? They didn't test Adah immediately at birth, but rather waited until she showed signs of the disease. That, to me anyway, shows a disconnect.

I sort-of get not doing prenatal testing (although she IS in her 40s, so there are things besides CF to consider. I know she wouldn't abort, but it might be nice to be prepared. A child with Down's and CF would be especially challenging) but I don't get not testing at birth. Why would they wait on that?

ETA: I guess Rees (ugh, that spelling) wasn't diagnosed until he was 8 months old, and she seems to believe she has magical breast milk.

[Boogalou]

I wonder if a part of her went into some sort of "God loves me and will not allow another child to get CF" denial of sorts when they had FIVE in a row without the disease? They didn't test Adah immediately at birth, but rather waited until she showed signs of the disease. That, to me anyway, shows a disconnect.

I sort-of get not doing prenatal testing (although she IS in her 40s, so there are things besides CF to consider. I know she wouldn't abort, but it might be nice to be prepared. A child with Down's and CF would be especially challenging) but I don't get not testing at birth. Why would they wait on that?

ETA: I guess Rees (ugh, that spelling) wasn't diagnosed until he was 8 months old, and she seems to believe she has magical breast milk.

I knew someone once who was Catholic and pregnant who wouldn't get prenatal testing done because they were not going to abort no matter what and there are some risks involved in getting it done and she did not think the risks were worth a few months prior knowledge. Maybe that was their thinking?

[keepercjr]

This family has 2 kids with serious diseases, and 2 parents. If each sick child gets one parent to themselves, it leaves no parent for the other kids. If one parent stays with the healthy child, only one sick child has a parent present. And it's entirely possible they'll have another child with CF. Completely selfish and unacceptable in my opinion.

I can say that since my brother was the "sicker one" he got a lot more attention than I did and when he was sick in the hospital I hardly saw my mom except for our evening visits. As an adult I don't fault her at all but as a child I felt left out and that he always got attention. He was also younger than me so I'm sure that played a part. Those parents out there with multiple kids with the disease I just don't know how they do it. It has to be emotionally exhausting and the other children in the family can suffer even if they understand.

As for not doing prenatal testing - I hope she is at least getting a late ultrasound so they can check the baby's intestines to see if s/he will need surgery after birth. And I really don't get not testing each child after birth! You know you have a 1/4 chance of having a kid with the disease and the earlier the intervention the better! Waiting till they show symptoms means they are losing health!!

[Minerva]

Glad I'm not the only person who's noticed the dehumanizing way with which the pro-life movement often treats people with disabilities. Positive stereotypes are still stereotypes.

Did anyone notice whether the quip about Pentecostalism was included in the Life Site "News" post? I don't particularly want to give their website an extra hit. I wouldn't be surprised by them implicitly endorsing Catholicism...

[HomegirlRuby]

There is occasional snark on kids here. But I think sometimes certain comments about children are viewed as snark by others. I remember in a Zsu thread, there were comments about the boys' suits being too big and people wondered why Zsu doesn't fix them up a bit and I remember poster was saying that we were snarking on the kids.

I agree, most people here don't comment on the blogs and sometimes when FJers comment on blogs the bloggers don't let them go through. With Lori "Nitwit" Alexander, she had blog entries that get historical details wrong and she will not allow comments correcting her.

And the whole "you guys needed to make a rule that says you can't speculate on a CHILDS sexuality" thing...