Micro premies: Care and costs

[mirele]

And she doesn't even care if people see her collarbones when she holds her premie for the first time!

I'm sure the Frenches were too dazed to care at the time, but can you imagine the level of relief to know that a multi-million dollar NICU stay was only going to cost $400?

Yeah, I cost over $3,000 when I was born in 1960 (my siblings less than $100 each in 1961 and 1964) due to mom having pre-eclampsia at birth. Mom told me recently one of her girlfriends counted 60 places on her body where she'd been stuck with God knows what when the docs were saving her life. And my parents had insurance.

[2xx1xy1JD]

I was horrified by the idea of lifetime caps on coverage.

Is that something that's changing with Obamacare or not?

What's the point of insurance if it doesn't cover catastrophic expenses?

Anyway, I'm glad that Juniper beat the odds. It sounds like the author had a condition that was somewhat similar to what I had while preg with baby #2 (subchorionic hemorrhage), and it drove home just how much worse the outcome could have been.

[cjsmom]

Thank you so much for posting, what lovely people.

Those dammed Ninjas and their onions made it all the way to England too...

This. The ninjas made it to western Canada too. They're busy!

[shesinsane]

I was horrified by the idea of lifetime caps on coverage.

Is that something that's changing with Obamacare or not?

I believe so. Since I have a family member who was more than halfway toward her lifetime cap when she turned 7, elimination of lifetime caps and stopping that pre-existing condtion nonsense were very important to me with the Affordable Healthcare Act, and both got included in the bill.

What's the point of insurance if it doesn't cover catastrophic expenses?

Money. It's a great racket: people pay for health insurance in case they get sick, then when they do get sick, deny them coverage or drop them entirely. The insurance company gets to keep all the money collected in the past and doesn't have to pay out anything now or in the future. It's an insurance business, not an insurance charity. :(

[vetrik]

That was a good story - thanks for sharing.

One of my co-workers at my last job had a super-early micro-preemie like Juniper. I think she was 24 weeks 1 day, but her baby weighed less than a pound at birth. I'll never forget the shock of coming in to work and hearing the baby had been born months before she was even due. The baby was in the hospital for 7 months and her care exceeded $1.6 million. She did survive and came home, but she was not lucky enough to avoid the more severe long-term effects of prematurity.

Our local paper has done a multi-part series on her:

Part 1: http://res.providencejournal.com/hercules/extra/2008/preemies/stories/part_two/index.html

An update at age 2: http://res.providencejournal.com/hercules/extra/2008/preemies/stories/part_six/story6_d.html

[marmalade]

I wish that Josie was getting the follow-up that Juniper got.

She said Juniper goes for therapies 3 days a week, on average. I really don't think that's happening (or ever happened) with Josie. Considering her age and based on what we saw from Josie, it's amazing what the therapies can do. Juniper was born what, 2 weeks earlier than Josie but walked and talked sooner. Sure, the Duggars appear to have taken Josie in for some checkups (and made sure some were on camera to shut us up), but given how they were traveling at the time, I seriously doubt Josie got the interventions that Juniper and Samuel Pope received.

[mkitten]

This. The ninjas made it to western Canada too. They're busy!

The ninjas and their damned onions have made a trip to Pennsylvania... Damn them!

[Jana814]

She said Juniper goes for therapies 3 days a week, on average. I really don't think that's happening (or ever happened) with Josie. Considering her age and based on what we saw from Josie, it's amazing what the therapies can do. Juniper was born what, 2 weeks earlier than Josie but walked and talked sooner. Sure, the Duggars appear to have taken Josie in for some checkups (and made sure some were on camera to shut us up), but given how they were traveling at the time, I seriously doubt Josie got the interventions that Juniper and Samuel Pope received.

I just don't understand why the Duggars would not take Josie for the therepy that she needs. I think in some states u can a therpist to come to your house, if one is worried about flu season. Are they worried that if she is w/ other kids she will rather be w/ them then her siblings. (sounds more like and Maxwell thing)

[Aerial312]

That was a good story - thanks for sharing.

One of my co-workers at my last job had a super-early micro-preemie like Juniper. I think she was 24 weeks 1 day, but her baby weighed less than a pound at birth. I'll never forget the shock of coming in to work and hearing the baby had been born months before she was even due. The baby was in the hospital for 7 months and her care exceeded $1.6 million. She did survive and came home, but she was not lucky enough to avoid the more severe long-term effects of prematurity.

Our local paper has done a multi-part series on her:

Part 1: http://res.providencejournal.com/hercules/extra/2008/preemies/stories/part_two/index.html

An update at age 2: http://res.providencejournal.com/hercules/extra/2008/preemies/stories/part_six/story6_d.html

You're in my neck of the woods. I clicked to read the article and realized I'd read these articles when they came out in the Projo back in 2008.

[ILoveJellybeans]

I just don't understand why the Duggars would not take Josie for the therepy that she needs. I think in some states u can a therpist to come to your house, if one is worried about flu season. Are they worried that if she is w/ other kids she will rather be w/ them then her siblings. (sounds more like and Maxwell thing)

I think their reasoning for this is that if they show her going to therapy, she would seem like shes not the perfect precious new addition and doesnt fit the mould for the perfect happy family. Having a child with special needs due to the amount of pregnancies might also make people think that Michelle was being irresponsible by having so many, or criticize her for trying for another baby.

[Jana814]

Completely agree with your statement! But people really DON'T understand why they had some many kids, even before they had Josie!

[rhianna]

I am going to disagree with the general sentiment here and say I found in glurgy in the style of christian email-forwards. The most interesting part to me was the discussion of the financial costs. I am in favor of universal healthcare, but I will be honest and stay that I wouldn't be pleased with taxpayer money going towards multimillion dollar NICU stays for micropreemies.

I will also say that I am childless and happily so, and I truly do not even understand a little the pain/heartbreak associated with infertility, difficult pregnancies, miscarriage and other situations relating to fetuses/infants. I can however begin to understand the attachment a parent has to a child once it over the age of 1 or so. As children get older, I can conceptualize the feeling parents have for them better and better. I fully realize that most people are not like me, and public opinion will always be in favor of drastic interventions for preemies. Probably it is a good thing.

[Rowan]

I will be honest and stay that I wouldn't be pleased with taxpayer money going towards multimillion dollar NICU stays for micropreemies.

Our healthcare costs are disproportionately spent on the very old and the very young. Even after watching my grandma suffer for 2.5 years after a significant stroke, I'd rather the money be spent on the beginning of what has the chance of being a long life than at the end to extend the suffering of one that is nearly over.

[2xx1xy1JD]

I am going to disagree with the general sentiment here and say I found in glurgy in the style of christian email-forwards. The most interesting part to me was the discussion of the financial costs. I am in favor of universal healthcare, but I will be honest and stay that I wouldn't be pleased with taxpayer money going towards multimillion dollar NICU stays for micropreemies.

I will also say that I am childless and happily so, and I truly do not even understand a little the pain/heartbreak associated with infertility, difficult pregnancies, miscarriage and other situations relating to fetuses/infants. I can however begin to understand the attachment a parent has to a child once it over the age of 1 or so. As children get older, I can conceptualize the feeling parents have for them better and better. I fully realize that most people are not like me, and public opinion will always be in favor of drastic interventions for preemies. Probably it is a good thing.

As a Canadian, I'm perfectly fine with my tax dollars going to NICU stays. I know babies who were born very, very early, and I'm grateful that their families were not put in a position of having to face bankruptcy in order to save their lives. That's what universal government-funded healthcare is all about.

[CrazySister]

Something I find interesting in comparing this girl and Samuel Pope to Josie is that both Juniper & Sam have waaay less of the micro-preemie "look" than Josie has. Idk if it could be entirely from Sam & Juniper receiving better follow-up care (therapies, etc.) or if it's just...because, but it just strikes me as odd how micro-preemie-ish she still looks, even at three and Juniper was what, two weeks earlier? I'm probably being overly critical but something I've wondered.

[fundyfunland]

She said Juniper goes for therapies 3 days a week, on average. I really don't think that's happening (or ever happened) with Josie. Considering her age and based on what we saw from Josie, it's amazing what the therapies can do. Juniper was born what, 2 weeks earlier than Josie but walked and talked sooner. Sure, the Duggars appear to have taken Josie in for some checkups (and made sure some were on camera to shut us up), but given how they were traveling at the time, I seriously doubt Josie got the interventions that Juniper and Samuel Pope received.

Apparently, I'm an evil witch. I'll admit to feeling verklempt, but I didn't cry. :?

Anyway, this was an amazing story and brings up some excellent ethical issues to focus on in healthcare - ones, I couldn't answer for myself if it was happening to my own premie.

[slickcat79]

I am going to disagree with the general sentiment here and say I found in glurgy in the style of christian email-forwards. The most interesting part to me was the discussion of the financial costs. I am in favor of universal healthcare, but I will be honest and stay that I wouldn't be pleased with taxpayer money going towards multimillion dollar NICU stays for micropreemies.

I will also say that I am childless and happily so, and I truly do not even understand a little the pain/heartbreak associated with infertility, difficult pregnancies, miscarriage and other situations relating to fetuses/infants. I can however begin to understand the attachment a parent has to a child once it over the age of 1 or so. As children get older, I can conceptualize the feeling parents have for them better and better. I fully realize that most people are not like me, and public opinion will always be in favor of drastic interventions for preemies. Probably it is a good thing.

I actually found it to be the opposite of a christian email-forward. They said they couldn't be sure if it was god's intervention that saved their child or something in the baby's nature. They acknowledged every form of prayer that anyone prayed for them, and were willing to credit any or all gods that may have had something to do with Juniper's survival. They heaped praise on the doctors and nurses who treated her. When she was born, they didn't label her a precious gift or claim feelings of instant connection because, in their words, she barely even looked human. The family was extremely hesitant to put the label of "miracle" on their child, largely out of concern for the families of babies who did not survive. Now, whether they actually believe that or were just saying it for the media, I don't know, but certainly fundie types and many other christians in general would have ignored it completely BECAUSE JESUS.

I'm also happily childless and probably always will be. I don't even like kids, but I don't think I can try to determine when another person will become attached to their child. I've heard enough stories from various people to think that it's different for everyone. I understand there's a lot of discussion about medical intervention, how much is too much, when is the expense too great, etc. I don't think there's an easy answer, but I think the Frenches were straightforward in the fact that they struggled with that question.

I don't think that rich people are somehow more deserving of quality medical care by virtue of being rich, but the Frenches seem to be a fairly well-off couple. I think they, and Juniper by extension, will be in a good position to be able to "pay it forward" and the fact that they are not bankrupted by medical bills is a big reason why. I can't really understand the mother's struggles with infertility or feelings toward her child, but what she said struck a chord with me for some reason. I can't say for sure if what she wrote was completely truthful, but I felt like she knew how to say the right things.

[Coconut Flan]

I will be honest and stay that I wouldn't be pleased with taxpayer money going towards multimillion dollar NICU stays for micropreemies.

Might as well be displeased since being a micro-preemie is a qualification as a disability for Medicaid and thus eligible for taxpayer funded healthcare. Since the baby would be hospitalized since birth, the parents' income and resources don't count until the child goes home.

[gustava]

Might as well be displeased since being a micro-preemie is a qualification as a disability for Medicaid and thus eligible for taxpayer funded healthcare. Since the baby would be hospitalized since birth, the parents' income and resources don't count until the child goes home.

The cost aspect also interested me. The author pointed out that they have excellent insurance, with no lifetime cap. Another poster above noted that indeterminate stage when hospitals have some latitude about which preemies to attempt to save.

In addition, it is modern medical care that allows these micro-preemies to be born at all. The author was in and out of the hospital before Juniper arrived. Costs begin before birth.

[rhianna]

The cost aspect also interested me. The author pointed out that they have excellent insurance, with no lifetime cap. Another poster above noted that indeterminate stage when hospitals have some latitude about which preemies to attempt to save.

In addition, it is modern medical care that allows these micro-preemies to be born at all. The author was in and out of the hospital before Juniper arrived. Costs begin before birth.

It is definitely a difficult issue. I did think the article was interesting in pointing out how significant intervention in a micropreemie was more likely to result in good health for many years as compared to similarly expensive interventions in, say, an 80-year-old.

However, 26 billion dollars is a lot of money, and healthcare like any other good is not infinite and must be rationed. Particularly as not all interventions are associated with improved outcomes (http://www.medscape.com/viewarticle/775770). The United States has a high rate of preterm births compared to Europe; possibly it would be better to use those funds to improve prenatal care such that preterm births are less frequent. This is an article which discusses the costs and benefits of NICU stays in aggregate: http://virtualmentor.ama-assn.org/2008/ ... -0810.html

The NHS in the UK only spends 1 billion pounds a year on premature births. There population is one fifth the size of ours, but they spend 16 times less on NICU stays.It would be interesting to study what they do differently. http://www.telegraph.co.uk/health/healt ... -year.html

All that being said,26 billion dollars is a small amount of total healthcare expenditure in the US. I would rather that 26 billion be spent on NICU stays than military expansion, among other things.

[veron1que]

Our healthcare costs are disproportionately spent on the very old and the very young. Even after watching my grandma suffer for 2.5 years after a significant stroke, I'd rather the money be spent on the beginning of what has the chance of being a long life than at the end to extend the suffering of one that is nearly over.

I'm with Rhianna on this one. A little heartless, but I disagree with public funds being spent on micropreemies. Just because we are able to intervene, doesn't mean we should. This isn't to say that a parent shouldn't be able to make that call, because their medical decisions are theirs not mine. I just think there are far too many people in the middle of their lives struggling with health conditions and not receiving treatment, while a micropreemie is eligible for millions in treatment. I also think we spend too much on the dying, and that society it too focused on keeping the suffering alive (I'm a strong advocate of assisted suicide, again, it's all about personal choice).

In any case, I'm glad to see that Juniper has two loving parents who are advocating for her and working to give her the best quality of life possible.

[roddma]

So interesting to read an honest account of a micro premmie. The Duggars always like to claim they want to be an example to people but the way they showed Josie's story made it seem so easy. We got the story of the perforated intestines while in hospital and the drama after release, when she had to be readmitted. Other than that, I think they just showed the positive. I am sure Josie's story was far more like Juniper's and we just didn't see it. I am glad the Frenches shared their story, as I now feel I have a much better understanding of what it is lie for those struggling with a micro.

I agree. I also think the Duggars are still n denial about Josie. After her vitla signs droped, they carried thousands of miles away like she is normal.

Even if I was childless by chice, it would be unfair IMO to deny these babies that never asked to be here coverage. Josie couldn't help she had parents that refused to quit having babies. Maybe there could be a cap on coverage but denial just seems wrong.

[lilith]

I would much rather see public funds spent on saving premature babies than extending the lives and suffering of people at the end of their lives with no hope for a decent quality of life.

I'm in no way advocating denying healthcare to anyone, but more and more expensive interventions are being used when palliative care would often be a kinder option for both the patient and their families.

My ex husbands father had been terribly ill for years with emphysema, dementia and heart disease. When he was well he expressed his wish not to be revived if it was ever necessary, and once the hospital asked us and his wife and we told them that his and our wish was that he not be revived.

They revived him anyway, and he lived in a nursing home for a further three years with no ability to do anything at all and in a horribly scared and confused state. It cost a fortune and prolonged the suffering of him and of his family. That story is becoming more and more common as our population ages and medicine advances enough to keep those people alive but not to keep them functioning and happy.

Medicine is an area where more can always be spent, but with limited funds I would prefer resources be prioritised for those with hope for a happy life before them.

[Witsec7]

If there is public funding for both extraordinary end of life care as well as public funding for premies and micro premies it should still be a family or individuals choice as to what measures are to be taken. I'm not opposed to a futile care review, but I do believe in individuals being able to make informed private medical decisions.

[lilith]

If there is public funding for both extraordinary end of life care as well as public funding for premies and micro premies it should still be a family or individuals choice as to what measures are to be taken. I'm not opposed to a futile care review, but I do believe in individuals being able to make informed private medical decisions.

I absolutely agree.

My issue (highly personalised, I know), is with the care becoming routine and being given even against the express wishes of the family and the individual involved.