Sunday, January 3, 2010

Should the Cost of Saving a Preemie...

Should the cost of saving a preemie dictate the minimum gestation that a preemie can be resuscitated?

This is such an emotionally charged topic but one that I find very interesting when you take your own personal situation out of your emotions and try to look at it from every angle.

An article in Politics Daily, written by Joann M. Weiner, brings up this subject (in relation to health care reform).

In her article she writes (of an article in the New York Times)...

Writing in The New York Times, Jane Brody told a very compassionate story of an 11-year-old girl who was born after just 25 weeks gestation, weighing only 13.5 ounces, but who is now, amazingly, an accomplished writer and illustrator. Brody did not cite the costs of the child's neonatal intensive care, other than to say that the infant spent the first five months of her life in a Falls Church, Va., hospital. (It is difficult to find data on such costs; one hospital in Rhode Island estimated the daily expense at around $2,000, which means that a five-month stay would cost upwards of $300,000.) The Times article concludes with a comment by Dr. Michele Walsh, a neonatologist in Cleveland, who says that although it is expensive to maintain "million-dollar babies," it becomes very cost-effective over time: "There is a return on investment when they get out into the work force and pay taxes."

That last sentence... that's where I'm stuck. Really stuck.

First off... the cost of raising a preemie can be far more costly than the NICU bill. I know of families who have hit their life time insurance cap before their child was 5. That would have been us had my husband not changed jobs (a job change made necessary because of our insurance issues). Preemies, post NICU, have years worth of specialist visits, therapies, tests, labs, equipment, hospital stays, shots (shall we discuss how expensive RSV injections are), mental health specialists (which is not well covered by insurance and largely paid for by parents) and medications.

Paige is now 11 (born at 25.5 weeks weighing 1 lb 12 oz). I cannot even begin to estimate that cost for our situation but I can tell you that it has exceeded the cost of her NICU bill. For many years she never went a week without seeing a specialist or therapist. After age 5 the weeks turned into months but she still never went more than a few months without having something jabbed into her to run some test. This went on for many years. So, when looking at the cost of prematurity on society, let's not stop adding it all up when they leave the NICU.

(On a side note... On New Years Eve I was sitting at my computer trying to think of something witty to write as my status update on Facebook when it hit me... Paige had not seen any medical specialists in 2009. None. I couldn't believe it. I got up from my computer and combed through the calendar... She saw her pediatrician once (regular kid stuff), had her teeth cleaned twice (regular kid stuff) and had both flu vaccinations (regular kid stuff). That's it. Oh boy did I ever cry. My poor child had endured 11 years worth of appointments (labs, visits, tests, etc) and finally had a break. Although she still has regular appointments with various mental health specialists... there were no medical doctors in her life for an entire year. I know it won't last (as puberty can bring back some of the issues that have subsided) but it was worth celebrating.)

Secondly, what about all of the preemies who will never work? Since the above quoted neonatologist can justify the dollars spent as an investment... where is the return on the investment then?

And to answer my own question... the cost of saving a preemie has never been a deciding factor to me when discussing resuscitation limits based on gestation. But I've been left with a few questions rattling around in my brain now that deserve further consideration.

(I'm going to open up the comments to allow anonymous comments)

38 comments:

Anonymous said...

I think this is a very important question to think about in the light of the health care debate currently ongoing in the US. I don't think cost should be an issue in deciding who to save, but I do think we need to be realistic about who will pay and how it will be covered. My friend is totally psyched by the elimination of the lifetime cap and the preexisting condition clause, since this may let him change jobs and maintain insurance for his 23-weeker (now 4, but with issues). I strongly support some kind of government-run program that will cover extreme catastrophic cases at the minimum (like a preemie birth or expensive rare cancer). There already is such a program for kidney transplant/dialysis patients in place, so it is not like this isn't possible.

Where I went to college, the University used to self-insure for health. This enabled them to provide their mostly 17-24 year old students with great coverage, including preventative care, drug coverage, physical therapy, and mental health services because most of this cohort is healthy. Unfortunately, they had one preemie born to a student, which bankrupted the insurance system. So between my freshman and sophomore years, we went from great coverage to "we'll think about covering you if you get hit by a truck" when the University switched to a private insurer at the same cost per student as the previous great coverage. I don't blame the preemie, his parents, or the University. It just saddens me that this kind of thing happens. (See http://www.progressivefox.com/?p=721 for an even worse version of this).

I just don't think it is possible to have both universally available care AND an entirely private insurance system. And I don't think it is morally right for a country as rich as ours not to have universally available health care.

Anonymous said...

I found that article(I read the full version from the NYTimes site) very sugar coated, like most of the rest of those types of articles. Forgive my jaded response, but, I feel that the health care industry will never come forward and REALLY clue people in on what happens with the majority of kids, and what about those who fell through the cracks? I don't know if my preemie will ever move out on her own, she will probably work, but who knows what kind of job, and would she be able to handle a full time position with her issues (mental & physical)? I don't know if you can ever put a price on this mainly because of the varied results...there can be full-term babies born with anomolies and be worse off than a 24 weeker..
As it is, I plan to have my preemie living with me indefinately, I don't see any hope in that changing for her, unless something miraculous happens.

Donna said...

I know for me, I was overseas when my daughter was born at 34 weeks at 3lbs 2oz. My entire hospital bill in a private hospital for c-section, a 2 week stay prior to the section and 1 week after was all of $3,000 yes, you read correctly three thousand. Here in the states it would have been 10 times that much. Add in the additional 4 more weeks that she stayed in the hospital in the NICU and the cost would have been beyond that. I don't know what her cost was at the secondary hospital as we were in the military at the time, so it was all covered.... I would have hated to have seen that bill!

tbonegrl said...

Our total bill for our 32 weeker twins who stayed a mere 4 weeks was 300,000. That doesn't touch on the amount of money the insurance has payed for 2 years of Synagis, doctors visits not only to specialists, but for an increased number of pedi visits due to a compromised immune system, and the intense therapy they have and will continue to have. The therapy's been footed by the county MRDD system. In a month they will start public special needs preschool, finded also by taxpayers.

I cannot put a price on resuscitation. For me, it's always been more about viability than cost. But my own children are examples of how even a 32 weeker can strain the system.

medrecgal said...

Cost should not "dictate" anything. If cost was at the forefront of whether or not preemies should be saved, we'd lose an awful lot of potential and far too many lives. (That could very well be happening, actually.) There are many other factors that influence the survival of a preemie beyond gestational age, and cost should never be a primary consideration (a secondary or tertiary one, perhaps, but never a deciding factor). There are many older preemies who have life-long issues that can be incredibly expensive over time. (I turned out to be one of them, though I was over 18 when they realized it.)

Who knows which babies will grow into productive citizens (i.e., that "return on investment") and which will be drawing from the social systems (and sometimes both, oddly enough)? There's no surefire way to tell that when a preemie is born; so to me that argument about cost at the NICU level seems at least somewhat wrongheaded.

I know of many people who didn't start off life as preemies who draw far more money from our various social systems than some preemies I know (myself included), which says to me that there should not be a cutoff point based on the cost of saving their life. What we really need are better systems in place to contain costs, as well as improvements in neonatal morbidity and mortality. But those things would require a complete overhaul in the way our healthcare system operates, and I don't see that happening in ways that would be productive or lasting.

* Love that side note, BTW! That's fantastic!

Kate K. said...

Cost is a subject that should be debated openly, but in my opinion, I don't think that it should be the determining factor on whether or not to "save" micropreemies. I believe that there are circumstances where the humane thing to do is provide comfort care. But there are many circumstances where I think that the neonate should be given assistance to survive.

It is complicated, that's for sure. I think that a lot of debate focuses on whether or not you think a fetus is "human" and once born early, at which point you think that the neonate has rights.

I think that one thing that really needs to be considered (and I know that this is a sensitive issue for many people) is whether or not it is ethical and justified to attempt to have children when one's body may not be a suitable "pod" (for lack of a better term). Once a woman is pregnant, I think that there is an obligation to the fetus after 3 weeks (when the brain starts developing) to ensure that a baby will be born as safely as possible. That 3 week mark is the line in moral sand that I've drawn for myself b/c I associate the brain with the soul. I recognize certain circumstances where a safe pregnancy might not be possible. If medical circumstances arise where the life of the mother is at risk, one has to take that into account b/c the baby isn't going to survive w/o the mother.

Where I think that cost should reasonably be considered (along with morality) is when a woman's body is a known risk. As NICU expenses are astronomical, is it fair to the community to bear the burden of those costs when the pregnancy could have been prevented (cost question)? Is it fair to attempt a pregnancy when one knows that one could be putting the future child in difficult circumstances involved with long term complications from prematurity (moral question)?

I'm not sure what the line should be for not attempting future pregnancies if one has a bad track record (e.g., has already had a preemie). Probably over the summer, I plan to see a high risk OB to assess my risk of having another micropreemie. If the risk is too high, we will unfortunately not be making a second attempt. What my husband and I haven't done yet, and we need to, is to define "high risk."

Anonymous said...

How are we to determine who is suitable for pregnancy??

My sister has only half a uterus. While there is a risk of a premature baby, MANY women with only half a uterus have given birth to healthy, full term babies. Some women who have children don't even realize they have half a uterus until they have surgery for something else. Should she be denied the ability to get pregnant or maternity insurance based on her medical condition?

Also, wouldn't the majority of women who have premature babies be considered high risk and therefore deemed unsuitable for future pregnancies? Minus a few circumstances (car crash, illness, etc) isn't having a premature baby just another way of your body trying to miscarriage?

Either way, it's the roll of the dice. Healthy women have premature babies and women with known risks have healthy babies. There is no formula. (in my opinion)

For us, after going into labor with my twins at 25 weeks, we have decided that we are done having children. No more rolling of the dice for us. That being said, knowing what I know now, I don't think I would roll the dice if I had a known medical condition that may cause a premature baby. But who am I to deny my sister's desire to get pregnant? Who's to say she won't be lucky?

Another question one could ask then would be if a woman who is known for giving birth to babies who are born addicts and/or taken away from her by Family Services, should she be labeled as unsuitable for pregnancy too? Children who are born addicts and/or endure abuse and neglect also put a major strain on our health care system.

The same goes for people who adopt. Some babies/children have issues such as RAD and can cost those parents a lot of money to help their child.

And what about women who smoke? Or parents who gave birth to a full term child with a major medical issue? My neighbor's first child had a serious genetic heart issue. She still decided to try again and guess what?? Yup, baby number two has the same serious issue.

Annie said...

I've always been interested to read your considerations about when to try to save preemies based on other considerations, but I would love to read your thoughts on the money side of thing. I am always so hesitant to even go near using terms like "investment" with lives, but when it comes down to it, we do live on a planet with finite resources and I think realistically at some point, at least sometimes, you really do need to have someone who can "put a cost on human life".
You must be so glad about Paige's year!

terri w/2 said...

This is an interesting debate - mainly because for us, the NICU cost 3 and 5 month hospitalizations for our twins, pales in comparison to the cost beyond the NICU stay.

Here's where the money went:
- repeat hospitalizations for shunt malfuncitions, seizures, orthopaedic, psych hospitalization, specialists
- therapies - OT, PT, speech, hydrotherapy, hyperbarics
- traveling, hotels, special equipment, special vechicles, specially built wheel-chair accessible home
- respite care, home health care
- loss of income (completely) of one parent
- eventual divorce due to high stress of caring for 2 children with significant issues

What planet does that neonatologist quoted in the article live in? So a few micro preemies will actually someday be employable - neither of mine will. And so one day in his vision some preeimes will be employable? What about all the parents who have lost their employability due to having to stay home and care for these children? Even Manpower who follows employment trends calls mothers of children with severe disabilities "the hard-to-employ".

Jennifer said...

From what previous commenters have posted about ongoing expenses exceeding the NICU cost, it seems $1,000,000 is not an unreasonable estimate. Even assuming for the sake of argument that most preemies will be employable, very few people pay that much in taxes over the course of their lives.

Whether we're talking about private insurance or a government-run program, the basic problem is the same: there is a finite amount of money available, and the only way to get more is either by raising rates (or taxes), or cutting other services. Dollar for dollar, eliminating NICU care entirely and redirecting that money to preventative care and treatment for other conditions would save far more lives. That doesn't mean it's morally correct to do that, but it's something to consider - particularly for those who think it's a good idea to put the government in charge of decisions like that.

Helen Harrison said...

It has been estimated by follow-up professionals in the Netherlands, who get much better outcomes than we do in the US, that about 40% of preemies born between 26 and 32 weeks gestation will not live independently as adults. (Walther et al. Early Human Development 2000). This research is still on-going with docs following the preemies till age 30 to see if the predictions are correct.

Meanwhile, the NICHD in the US is showing about an 80% or higher ( depending on definitions and specific gestational ages) in 2 year olds born at 26 weeks or less. Almost all impairments noted at this age are likely to lead to a future of dependence and/or high-cost medical needs. (Gargas et al., Pediatrics 2009) (Hintz and Kendrick, NICHD data presented at SPR 2009).

I'm not sure what anyone should do with this data, and would hate to see mandatory cut offs or government decision making. Instead, I think parents and patients should be given full, honest information to make decisions for themselves and their families.

When this is done among critically ill adults, the vast majority decline expensive high-tech care, even when potentially life-saving.

I think an informed and empowered public can make wise choices, especially since the most financially costly care is also the sort that is likely to be highly "costly" in human terms such as pain, disability, and suffering.

I also think the profit motives for hospitals and doctors to encourage "costly" care should be greatly curtailed, so that such care isn't pushed on unwitting/unwilling patients and their families.

The Hillbergs said...

I believe its going to be a question of rationing of resources. Right now, in the healthcare crisis, everyone believes they have the right to as much medical care as possible. But we already see that that cannot be -- for instance, organ transplant. There is a limiting resource in, say for instance, Hearts. so, not everyone who NEEDS a new heart can have one. People smarter than I are the ones who figure out the criteria for being granted this medical procedure. Its kind of the same in the NICU (and most other health care areas) - except the limiting resource is money. Some people don't think that should be a limiter - since heck, can't we just print some more up? But, it really is the limiter - and in the future - especially with all this 'healthcare reform' -- there will have to be people who decide how much is too much to spend on NICU care... that's what i think anyway!

Anonymous said...

I don't think cost should be the sole criterion for determining treatment. MY DD was one of 3 preemies from our small town at the big city hospital at the same time. It so happened that all 3 babies were about 29 weeks. My DD spent longer in the NICU than either of the others. I am confident that she is now doing better than either of the others (all nearly 9). So, she cost most in the NICU, but is costing the least now. Of course, it remains to be seen just how productive a tax payer she'll be...

On the other hand, cost does have to figure in the discussion somewhere, as the $ is not endless. I sure don't have the answers, but I wish it were possible to put at least a *few* strictures on who could get pregnant. Anon 10:40 pointed out that healthy women can have preemies and high risk women can have full term babies - very true. However, what about people like the mom on one preemie forum I used to belong to who had 4 preemies. Not a one of them had made it past 27 weeks, and at least a couple were 25 weekers. All were singletons, btw. At some point, somebody *should* start suspecting a pattern that is draining medical resources. As for the women with a history of producing drug addicted babies? He%# yes, she should be prevented from having more babies, and I believe in some cases women have been court
ordered not to get pregnant.


Paula

Helen Harrison said...

To Paula,

I totally agree with you that people at high risk for repeated prematurity (addicts for example) should be strongly discouraged from pregnancy.

But, this would, logically, have to hold true not only for impoverished drug addicts, but also middle-class women who avail themselves of fertility treatment or who wait till late middle age before attempting pregnancy.

I have been told by OB/Gyns and Neonatologists (also epidemiologists) that the main cause of the recent increased rate in prematurity is not illicit- drug addicted mothers, but those who are users of such drugs as clomid and pergonal (ovulation enhancers). I would also add docs who implant more then one or two embryos, in IVH, and who make a fortune on giving multiple pregnancies to uninformed couples.

I would hope that some sort of universal health care coverage would help rein in such irresponsible high-risk pregnancies.

Anonymous said...

Helen - I should have been clearer in my first post. The woman to whom I referred with the 4 extremely early preemies was not a drug addict; just an average middle class woman. So, yes, there are two socioeconomic groups referred to in my post. I don't blame just the low-income drug addicted mother for misusing medical resources.

Paula

Helen Harrison said...

Paula, I want to emphasize that I am totally with you on this!

I hope that, under a more rational system of healthcare, we can encourage responsible family planning decisions across the socio-economic board.

terri w/2 said...

As an aside, in light of the discussion on whether or not to limit those "at risk" from having children (or more children). .

Nadya Suleman was in the news this week - or more specifically, a segment on one of the news programs about the fertility doc who got her pregnant with her 14 children over the years. .apparently he is being investigated for his apparent negligence in the Suleman case and is facing sanctioning. .

When Nadya Suleman was asked what she thought about her Dr. being punished she said (and I'm quoting loosely) that she was sad to hear that because who would she go to should she decide to have more children??

Jennifer said...

Thinking about it more, I've realized that whether a preemie will grow up to pay the 'usual' amount of taxes is irrelevant, because (even excluding medical expenses) they'll still use the same taxpayer-funded services as everyone else - police, fire, schools, etc. Every preemie would have to grow up to pay $1 million or so in ADDITIONAL taxes (compared to the average taxpayer) for it to be worth it from a financial standpoint. I don't know if that's ever happened, but I know it doesn't happen often.

In real life, the decision-maker is the one who's footing the bill. Who has the right to determine who's 'fit' to get pregnant? Whoever's financing the consequences, that's who. If the government pays for it, then they have every right to restrict it. That's one of the reasons many people don't like the idea of socialized healthcare.

Helen,

Why do you think universal health care would decrease that sort of irresponsible behavior? Most people who do it now are paying cash for it. I would hope it wouldn't be covered under universal health care, but if it was, it would make Clomid, Pergonal, and IVF more widely available, and increase the number of people using them.

Anonymous said...

Jennifer,

In some countries in Europe, IVF is covered by the national health system, but only for single embryo transfers. This greatly decreases the chance for twins in IVF (and thus the probablity of a preemie), and would probably make a big difference in a country as large as the US.

--JD

Anonymous said...

I understand what some of you are trying to say, but I have to admit I get pretty nervous when people start talking about who "deserves" to be pregnant and who doesn't. Infertility is a medical condition that deserves treatment, like every other medical condition. We don't blame people for their astronomically expensive diseases, so why do so for cases of prematurity? How many quadruple bipasses are being done every day? Or organ transplants? Or experimental cancer treatments? We don't say, oh you didn't eat a healthy diet, you can't have that angioplasty. In addition, it's important to think carefully about the *causes* of prematurity, and rising numbers of multiples due to IVF is only one of them. Maternal age is a more dubious risk factor. Conditions that commonly lead to premature birth, like preeclampsia, aren't tied to diagnosable risk factors. Do other countries have the same rates of prematurity as we do? What can we do to try to stem this problem? I hope that the solution to this tragic problem is better preventive medicine (ie identifying and dealing with risk factors) rather than bad policies dictating who can get pregnant. I seriously doubt that any country with universal health care (ie every industrialized nation except the US) refuses care to preemies or forbids certain mothers from getting pregnant. If their rates of prematurity are lower, perhaps there's something they're doing better than we are. As someone mentioned earlier, one of the things they do is regulate IVF transfers more carefully - one or two transfers. I know this is controversial in the US ART community, and it's important to keep in mind it's only *one* potential solution, not necessarily the golden ticket solution.

For me, I look at the whole health care system and how broken it is in this country, rather than looking at one small part of it (NICU) and worrying about the costs there. If the overall system were less astronomically expensive, it could more easily absorb the costs of critical care.

But I also agree with all the commenters who wrote about continuing financial costs of preemies, and how the media and doctors tend to gloss over these issues, to the detriment of parents needing to make critical decisions.

Anonymous said...

I think determining "who" is allowed to have a baby is a slippery slope. If we are in favor of saying that women who are at risk of delivering a premature baby should no longer be allowed to have anymore children, how is that any different than saying that 2 hearing impaired or deaf individuals should not have children? What about a couple who has a cognitive disability, but are both leading independent and self sufficient lives. I think if a determination is made that a woman who is at high risk shouldn't have more children, it will only lead to more restrictions. Which essentially is unconstitutional.

Furthermore, should someone who is high risk disobey the doctor and become pregnant, what are the ramifications or punishments? Do we force elimination of the pregnancy, do we take the child away from the mother once it is born? There are women who are addicted to drugs and lead incredibly unhealthy livestyles that NEVER have their children taken away from them.

Of course these are all worst case scenarios, but as I said earlier, it is a slippery slope determining such things. And it won't just stop with pregnancy.

Cost should not be the only factor. As a matter of fact, I don't know that I believe it should even be a considered factor. The cost for saving a 34 weeker can far surpass the cost of a 27 weeker depending on the medical issues the child faces. It could even surpass the cost of a child born full term should that child have a heart defect or intestinal defect that is cured with intensive and ongoing surgeries. But those surgeries have no impact on their contributions to society 30 years down the road.

It is frightening to me that some people even think that determining "eligibility" for having children is even a viable option.

Helen Harrison said...

Haven't read all the comments fully yet, but it seems that no one, except "anonymous" 5:01 and 5:55, is talking about who "deserves' to have children, or who would be "allowed" to become pregnant. No one else has mentioned determining "eligibility" or "punishments" for "disobeying."

I think improving the general health of women, giving them access to honest information about pregnancy risks, reliable birth control, treating infections, treating addictions, treating gum disease (which is associated with preterm birth), improving prenatal and pre-conceptional nutrition, making sure women have folic acid supplements, etc. would make a major difference in the preterm birth rate in the US which is higher than in other industrial countries with universal health care.

The issue I *would* like to have mandated is the single embryo only transfer (paid for by insurance) as is done in many countries with universal health care -- with good results. Regulation of the lucrative ART industry in the US is long overdue!

Otherwise, I can't help but think that informed, empowered parents, or prospective parents, will generally act in their own best interests if given information and options.

Jennifer said...

Whatever the cause of a person's infertility, it isn't 'cured' or even treated by IVF. Having a baby has no impact on the underlying medical cause, and thus cannot be considered a treatment. Having children or not is a lifestyle choice, not a medical issue. Many infertile people spend money to have them, and huge numbers of fertile people spend money to avoid having them. Both are legitimate desires, and both are the responsibility of the individual to fund (though government-funded contraceptives may be a good idea in some cases).

From a financial standpoint, wouldn't it take (on average) twice as many cycles for the average woman to conceive with one embryo as it does with two? Considering the cost of each cycle, and the huge increase in the number of people who would take advantage of it if they didn't have to pay for it, I wouldn't assume that any money would be saved by doing that. A few insurance companies do cover IVF, and to my knowledge, none of them have that rule, though they're the ones that end up paying for the resulting premature babies, as well. It seems to me that if that restriction was profitable, the private sector would have done it by now. Have any studies been done about this?

Anonymous said...

Very interesting reading. I am an RN and worked about a decade in mother-baby, at a time when 25 weeks was considered the absolute bottom number for viability. I was no longer in the baby making game at the time (my sons were in grade school, both healthy and having weighed over eight lbs at birth) but I do remember discussing this matter with our chief of neonatology, who had a perfectly healthy baby girl at home. She told us nurses one quiet night shift that she and her husband had decided that if she went into labor before 32 weeks, she was going to stay home and deliver, wait for the inevitable, and call EMS afterwards. She had seen too much of what happens to micropreemies.

I also find it ironic that we are saving 23 week "babies" when it is still legal to kill them if they are unwanted "fetuses". Sort of a cognitive disconnect there...

Finally, I have worked hospice in the subsequent years and feel strongly about heroic and futile measures on adults and YES I have my own living will in place. I think that the fiscal and emotional costs of a full court press on micropreemies is a drain to society and parents or their substitutes, since many preemies here where I live wind up either with 24 hour home care or in a institution. Kangaroo care and oxygen, and let the Universe decide. As been said so often by wiser folks than I:

"Just because we CAN doesn't mean we SHOULD."

Pattie, RN

Helen Harrison said...

to Jennifer who asked why the private sector (insurance companies) is not asking for single embryo transfers:

Very few companies offer fertility treatment coverage at all, and I suspect those that do have some sort of requirements, though I don't know for sure.

However, it is so easy, using lifetime limits and other forms of recision to get rid of those families that ultimately prove to be too expensive, so I doubt that ART limitations of the sort that exists, in , say, the UK is an important part of the insurance companies' calculations.

With the insurance companies unable to dump expensive patients curtailed (as under the proposed health care bill), there would be an across the board incentive for everyone to control costs, to prevent easily preventable medical disasters (such as the octomom fiasco) and to make more responsible health care decisions.

I think very few families want 8 babies or even 2 to 3 babies all at once, especially when it so often involves prematurity and lifelong disability.

And to Pattie, RN, like you, I often hear from neonatologists and NICU nurses (and other medical professionals) about the steps they would take to avoid having a surviving preemie themselves.

Anonymous said...

Interesting subject. I'm a former NICU nurse and at one time believed that everything possible should be done for every baby over 24 weeks gestation. Then I started working in home care and after viewing life from the family's perspective, started to feel differently. The cost should be viewed not simply in financial terms, but the overall cost to the family's total resources. That said, I think that very few working in neonatology have a clear view of what the ongoing costs will be to the family.
I don't think our society should ever dictate who should and shouldn't have babies . . . but I do think the ultimate decision about resuscitation of a premie should be an informed decision made by the parents themselves.

A neonatolgy fellow that I worked with some years ago was having contractions at 26 weeks. She said that if she delivered, she did not want her baby resuscitated. The hospital told her that would not be possible, they would have to do a full resuscitation. She and her husband rented a house in the desert where she planned to deliver away from medical attention.

Parent who are at high risk of a very premature delivery should be fully educated about the possible outcomes and be able to make an informed decision about what they want done. If they want everything done, then it should be done; if, however, they choose to let nature take its course, that wish should be respected.

Helen Harrison said...

It is sod sad to me that mothers (medically educated) will risk their own lives and go "to the woods" or "to the desert" or to a "cabin in the Alps" in order not to deliver a surviving preemie.

I have heard this story more times than I can count from medical professionals from around the world.

terri w/2 said...
This comment has been removed by the author.
Anonymous said...

Helen, it is because we have seen the costs, and the monetary ones are the least of these! Too many people focus on the tiny preemie in NICU and saving his or her adorable new life, and cannot see 25 years into the future when the infant, now weighing 138 lbs, retains the cognitive and neurological status of an infant, complete with trach, feeding tube, monitors, and bi-monthly trips to the hospital. We love the "Rocky" type success stories, but they are newsworthy only because a micro-preemie adult with no impairments is such an anomoly. If hospitals could adopt and implement a hospice atomosphere, where low lights and skin-to-skin contact while saying "hello and goodbye" to these babies was allowed, nurses and doctors wouldn't be forced to choose between a postpartum hemorrhage or a lifetime caring for a child who was never meant to survive extrauterine life...

Pattie, RN

Helen Harrison said...

Dear Pattie and Group,

Our preemie son Edward is 33 years old -- he lives at home and my husband and I care for him.

He is multiply handicapped --"mild" CP which is, in fact, incapacitating, mild retardation (IQ of 59) --also incapacitating, hydrocephalic, and severely visually impaired -- also autistic. He's had more than 15 operations in his life.

He used to be fairly physically healthy except for shunt issues, but all the adhesions from various surgeries over the years(from various neonatal issues) have compromised his lungs and intestines, and more.

He had a heart attack two years ago after developing a cold that quickly became pneumonia. He ended up in the ICU with consults about end-of-life.

He is, at this moment, facing something similar -- a vicious chest cold and possible hospitalization. He is tachypnic -- about 40 BPM, his pulse is 90+ BPM. His O2 sats on a pulse oximeter is 93-95 (mine is 98+). He's fairly alert and active at the moment -- after a dose of Nyquil.

HIs temp is only 99 to 101, so far (unlike 102-104 last time). We would *greatly* like to avoid the hospital, but will do what needs to be done.

I realize this is not the place for giving specific medical info, but I would like to know from any of you who are MDs or RNs -- does he, in your opinion, need to be hospitalized based on the info given above?

His breath sounds (as best I can tell) include major wheezing noises at night, but sound fairly clear during the day when he is upright.

I don't know what we will be facing after an MDs appt. tomorrow AM, but would be grateful for your informed opinions, if you feel you can give them.
My private email is helen1144@aol.com

TIA,

Helen

whitewolf said...

I had a beautiful baby girl at 26 weeks and she only weighed 1lbs.13 oz. I agree the cost doesn't end when they leave the NICU. But as far as I am concerned these babies are priceless and they fight to be alive. Life has no monetary measurement. Nothing in this world could replace the joy of seeing my daughter's first toothy smile, seeing her walk for the first time and just the blessing of being a mom.

JUDY said...

I AM A FOSTER PARENT. IN 9 YEARS I HAVE LOVED AND CARED FOR 17 DRUG EXPOSED OR ADDICTED EXTREEME PREEMIES. IN MY OPINION, THERE ARE NORMAL PREEMIES AND DRUG PREEMIES. UNFORTUNATLY THIE STATE OF TEXAS TREATS THEM LIKE TINY NEWBORNS AND I AM OUTRAGED. THEY SEND THEM HOME WITH WHO EVER WILL TAKE THEM. I HAVE ADOTPED ONE PRECIOUS GIRL SHE IS NOW FOUR. THERE ARE NO STAT'S ON THESE BABIES.

Kate K. said...

RE: Pattie, RN's comment: "I also find it ironic that we are saving 23 week 'babies' when it is still legal to kill them if they are unwanted 'fetuses'. Sort of a cognitive disconnect there..."

I was just talking with my mom about this the other night. Our legal system based on precendent has many benefits. But one problem of it is using precendent when there is new

Kate K. said...

RE: Pattie's comment: "I also find it ironic that we are saving 23 week 'babies' when it is still legal to kill them if they are unwanted 'fetuses'. Sort of a cognitive disconnect there..."

I was just talking with my mom about this the other night. Our legal system is driven by "precedent," but some precedents were established in the absence of the scientific information that we have today. Breaking a pregnancy into trimesters a la Roe v. Wade is one of those precendents that doesn't clearly match onto a fetus/child's development in some ways. Of course, development is a continuum so one could argue that classifications will always be arbitrary to some extent. But if the decision could be rewritten, I wonder if the third "trimester" or period would be moved to 20 weeks when research suggests that the concept of pain becomes more coordinated with the brain for the fetus/baby.

Another irony is how political liberals are quicker to extend the period of abortions (failing, in my opinion, to recognize rights of the fetus/baby) BUT wanting the "system" to provide monetary support for just about anyone once they are born. Then we have the conservative lot who demand that every pregnancy be considered viable, refuse to talk about birth control, and then don't want to provide social services for children born into most unfortunate circumstances. I find the inconsistencies on both sides quite baffling. But a lot of people figure out ways to avoid inconsistencies in their own reasoning (cognitive dissonance at play!).


Anyway, I'm really enjoying the dialogue on this thread. Gives me pause in trying to sort out what I believe and where my belief inconsistencies may lie!

GoldRags said...

In South Africa, where I live,unfortunately cost does dictate that. In most public hospitals if your baby is born under 1 kilogramme/ - about 2.2 pounds or 35.2 ounces or is under 28 weeks, the baby will most likely not be ventilated, & given only oxygen, - I've heard that if they survive 24 hours then they will get ventilated. If you are fortunate enough to have medical insurance in South Africa with access to hi tech private hospitals, then chances of survival for a preterm infant, from around 26 weeks regardless of weight in general, would be as good as any other first world hi tech hospital. Sadly in South Africa, the majority of people are unable to afford medical insurance because it is just so expensive and they have to go to public hospitals where care is often not as good or hi tech as the private run hospitals. Not all public hospitals are sub standard in comparisin to private in SA, but most.

product liability insurance said...

I truly hope that insurance company will coverage the preemie back again. It is my biggest concern lately. Keeping my fingures cross and praying.

Imperfect Mom said...

How is the "value" of a life determined?

People like to scoff when "death panels" are referenced when talking about national healthcare, yet isn't that exactly what we are talking about? Some committee, scientific formula, etc... determining who should or shouldn't get an opportunity to live? As someone mentioned above, there are a limited number of hearts available. Not everyone that needs one will get one. The same will have to be true of publicly-funded healthcare. It is not a limitless resource. It's naive to believe that everyone will get all the care they need. It simply won't be possible.

Is that not a terribly slippery slope, particularly as costs continue to rise?

What, exactly, determines a person's "worth"?

The circumstances of their conception? Does that mean a child conceived in a marriage bed is "worth" more than one that is not? Is a child conceived from expensive fertility treatments "worth" more than one conceived easily? Of course not. Human worth is not determined by the circumstances of conception.

The circumstances of their birth? Is a child born vaginally, with no complications, "worth" more than one born following a complicated delivery requiring a more expensive surgical intervention? Of course not.

Is "worth" determined by genetical perfections or imperfections? Is a beautiful cherubic newborn "worth" more than one born with a cleft lip?

Is a healthy, full-term baby more "worthy" of medical care than one born not as healthy?

Are my son's "worth" more because we pay more in taxes than a less fortunate family?

If the answer is "yes", than we are on a slippery slope indeed.

Yes, there are very real costs involved with the raising of a preemie. I have a million dollar+ 23 weeker (1lb 2oz at birth) surviving twin that is now 10 years old. Of course these costs should be explained to parents facing a possible preemie outcome.

Throughout my older son's 10 years, I have heard many arguments that preemies that early shouldn't be saved because of the drain on our resources (healthcare, education, etc...).

I wonder: who determined that the circumstances of their birth determined their "worth"?

Anonymous said...

Everyone here who thinks that taxpayers should bear the $1,000,000 hospital costs of micro preemies better be voting Democratic. And believe me, taxpayers do bear the cost because our own insurance premiums go up or hospitals shift the cost to the insured. How many of families would be fighting to save their extreme micro preemies if they actually had to pay the cost and spend the rest of their lives in poverty trying to pay the medical bills? It's easy to talk about the sanctity of life when your own life is not being affected (that is you are not going $1,000,000 in debt.) Why should I, the taxpayer, be asked to pay every time a parent won't accept the reality that without extreme developed world medical technology, a micro preemie should not kept alive at all costs. It's always someone else bearing that cost. All life is not a miracle, or if you really believe it is, you rack up the bills.