Wednesday, January 10, 2007

Malaria

Malaria is one of those diseases that has practically no significance in America but has major impact in other parts of the world, especially Africa. There is an article in the latest Time magazine about the disease and ways we can combat it. The article is written by Jeffrey Sachs, a prominent economist who has advised many programs, including the World Bank, on poverty and written the book The End of Poverty.

Sachs points out how devastating malaria can be - he predicts it will kill two million African children this year - yet how relatively easy it is to prevent and treat with some quite inexpensive tools. Insecticide treated mosquito nets, which cost about $10 apiece, are an effective preventive measure, and a new medicine can treat malaria at a cost of about a dollar per treatment. The Red Cross has demonstrated that the mosquito nets can be distributed well in pilot programs in Togo and Niger.

The problem is that many African people and nations can simply not afford ten bucks per person for such a mosquito net. Sachs estimates that a comprehensive prevention and treatment program for the entire African continent would cost about $3 billion per year. That sounds like a lot, but Sachs gives a couple examples of how minimal that amount is compared to some other items. For example, if we figure there are about one billion people in the high income world, that's $3 apiece. It's 12.5% of the estimated $24 billion in Wall Street's Christmas bonuses. Another example came to my mind. If we figure the Iraq war to cost about $80 billion per year - likely a conservative estimate - that $3 billion pays for 14 days of war.

It's only fair, though, that I relate an example that hits a little closer to home. If we figure that an extremely premature baby's hospital bill is $500,000, that's equivalent to the cost of 50,000 insecticide treated mosquito nets, which have the potential of saving many lives, not just one. Is that fair? Of course it's not, and it bothers me. The problem, though, is that I don't know how to take that $500,000 from the extremely premature babies and give it to the kids who need mosquito nets, and I don't think anyone else does either. Let's face it: If we were to stop caring for tiny premies in order to save money, it's highly unlikely that the money saved would go to African children. It would be much more likely to go to tax cuts, pork barrel projects, or American social programs.

So what are people with a conscience to do? Frankly, I'm not about to stop resuscitating premature babies, especially when parents and society tell me I should resuscitate them, but I can stop ignoring the malaria problem and donate money for nets. Sachs suggests charities like malarianomore.org and nothingbutnets.net (no pun intended). I agree with Sachs and also with Jimmy Carter, who once famously said "Life isn't fair."

61 Comments:

Anonymous Helen Harrison said...

No life isn't fair, and it is tough even in the best of circumstances. That's is why I worry about parents being forced (as you say you would do) to accept resuscitation and treatment for a 24 weeker (or 25 weeker).

In all the state and community meetings I attended in the mid-1990s, there was agreement (except among neonatologists) that parents should have the right to refuse resusciatation for infants born at less than 26 weeks. Again, the neonatologists held out hope that postnatal steroids were improving outcomes so much that no one should have the right to refuse this wonderful new treatment! As a result we have a generation of very impaired preemies who are now inundating the school systems.

You asked (under "outcomes") for evidence of this -- here is one piece of data from Massachusetts in which NICUs are "credited" with nearly doubling the rate of children needing special programs (during the period from 1992 to 2002) and quadrupling the number of those with moderate-severe "delays."

Twenty years ago, the Massachusetts educators report, roughly 2% of the population of school-aged children has medical diagnoses that affected their ability to function in school, both from a cognitive and physical standpoint. Currently, conservative estimates suggest that 7.5% of the school aged population cannot be expected to prosper in school without significant academic and medical assistance. I have given the link to this document in an earlier post, and would be glad to send it out again to anyone who wishes to pursue it further. (contact me at Helen1144@aol.com)

RE Saigal's studies on adult outcomes in preemies (mentioned under "outcomes"): My son, who is severely disabled, would be classified, according to this study's criteria, as having made a "successful" transition to adulthood. Special ed students are given regular high school diplomas when they "age out" of their programs at 18 or 22. Because my son attends a day school for the disabled 4 days a week (when he's well, that is)he is "pursuing post-graduate education."

As a consultant to Saigal's project, I visited McMaster University where this study took place and met many of the kids and families. At the risk of being a perpetual pessimist, I must point out that the reality is not nearly as rosy as the press releases would make you believe.

I think the thought of a trade off between mosquito nets and NICU care is a long way off. Right now it is a trade off here in the US between education funds for mainstream students versus the crushing, and ever increasing, costs of special ed.

1:42 PM  
Blogger Am said...

Thank you for bringing up malaria. My husband, our baby daughter, and I recently returned from a month-long trip to Bangladesh. Even with the luxury of 30% DEET spray, a mosquito net, and prescriptions for mefloquine, I was still very concerned about the possibility of contracting malaria. I can't imagine how devastating it would be to have no way to protect against it.

By the way, the DEET spray didn't help at all. I think the Bangladeshi mosquitoes thought it was an exotic condiment that was a great complement to American blood.

3:35 PM  
Anonymous Helen Harrison said...

Sorry not to include the URL in my previous post here, but I was having trouble cutting and pasting it into this form.

I was going to type it out the long way but was interrupted by the need for an intensive bathroom clean-up -- Ed is only partially toilet trained.

So I'll try again now and hope that I don't make any typos:

http://www.aasa.org/publications/saarticledetail.cfm?ItemNumber=2548&tnItemNumber=951

And here are other links stating that prematurity is now the leading cause of disability in the US and the leading cause of retardation -- giving us a strong hint as to why the schools are feeling overwhelmed.


http://www.hhs.gov/asl/testify/t040512b.html

and

http://pub.ucsf.edu/today/cache/feature/200607104.html

3:50 PM  
Blogger Sarabeth said...

I think I will donate, and I'll mention this on my blog as well.

5:01 PM  
Anonymous Anonymous said...

I used to do contract IQ testing for LA County, and this was certainly not my experience.

Schools are becoming overwhelmed due to the No Child Left Behind Act as well as changes in the parameters of what constitues special ed. The parameters are so wide, I could basically admit someone or not depending on analysis of test scores as I saw fit.

Just ONE standardized subscore on any one test at 85 or under will do it. Its ridiculous. From memory, I only had one MR diagnosis for a preemie (32 weeker) whose mother was also a heavy drug user throughout the pregnancy.

7:36 PM  
Anonymous Helen Harrison said...

To anonymous:

When were you IQ testing?

According to Pena et al. at LAC-USC Medical Center in LA: 72% of babies below 550 grams, 47% of those 550-750; and 17% of those 750-1,000 g. were retarded on follow-up

(data from 1992-94).
(Pediatr Res 1996;39:275A, abstract 1633)

Maybe they were all being home- schooled?

9:06 PM  
Blogger terri w/2 said...

Re: special education costs and prematurity. .from a memo from the Mequon school district near Milwaukee. .

"requests for additional special education staff for the 2004-2005 school year, and an extensive review of some of the issues important to these decisions and to the reasons for the phenomenal growth of special education enrollments throughout the country"

One of the major reasons cited for the increase . .

• Nationwide, doctors are now saving many children who only 10 or 15 years ago, would have died at birth or during early childhood. During the 2002-2003 school year for example, we evaluated and placed 14 students with disabilities who were “low birth weigh babies”, the smallest was 1.6 pounds. Nationally, more than half of the babies who weigh 3.3 pounds or less at birth require special education services. Between 1980 and 1985, 35,000 low birth weight babies were born in the USA; 52% survived to age 5 and 30% of the survivors required special education. Between 1995 and 2000, 55,000 low birth weight babies were born in the USA; 90% survived to age 5 and 54% of the survivors required special education.

11:00 PM  
Anonymous Anonymous said...

Anecdotal evidence about the schools being overwhelmed:

A fellow foster mother to special needs kids (she has 6, 3 different family groups, all special needs with either physical or psychological problems) was told at an IEP meeting by a school psychologist that each of her kids was costing the school district about $80,000 per year to educate, with all the special services and aides, etc. This was about 4 years ago. Depending on your state/district, I think that came out, at the time, to be 10x the dollar amount for a neurotypical kid's public education---at that time.

As far as No Child Left Behind, to what degree is that an unfunded mandate? I believe the problem could reside equally with the unfunded mandate part of the equation as with the increased number of ex-preemies---we must remember the accepted data is 12.8% of all births are preemies!In other words, another one of those pesky multi-factorial problems.

CAK (Chris and Vic)

12:05 AM  
Anonymous Anonymous said...

I believe Africa has a far larger problem than that in AIDS. Not only are the children infected at birth affected, but many children lose one or both parents to the disease and are left with no other family members to care for them.

Access to medical care in general is poor. Access to nutritionally adequete food is also a problem, and many children die because of it yearly.
I had read about these problems in magazines before, but it seemed vague and clouded- too far from my version of reality for me to understand as constituting the existence of anyone in those circumstances. Then, in due course of reading a select few medical blogs (due to a chronic health problem and a fascination with medicine) I came across the journal of a young lady doing volunteer work as a midwife in Malawi.
I invite you to read some of her blog. http://babycatching.blogspot.com/
Hardly a post leaves me unshaken, and it makes me feel determined to find my way of doing good and contributing to the true elimination of extreme poverty.

1:22 AM  
Anonymous Anonymous said...

This is getting crazy. Who are you railing against here? The docs? The parents? We are unsure of my 28 weeker's future at this point, but so far so good at age 2. Are you trying to tell me I made the wrong choice and should have had them withdraw all treatment? He was on a vent for a few weeks, but otherwise an uneventful NICU stay. I just don't get it. I understand you fighting for parental choice, but the perception on the part of myself as a parent is that you somehow feel I have done the wrong thing. You don't know me and you don't know my child.

1:37 AM  
Anonymous Claire said...

Oh, dear, this thread is being hi-jacked by all us furious people from the previous one! I think, however, that to your observation Life isn't fair, I would like to add another one: There are no certainties. (Well, yes, I suppose I have to exclude death and taxes) These are the two mantras or convictions that have served me pretty well. I am fairly new to this kind of exchange, and uncertain about it. Its nature leads to the knee-jerk responses of conversation, not the considered response of an essay or report. Words are powerful and may be unconsidered. As the mother of a premature baby born before, and without the benefit of, the advances of the last few years, I had innocently (and on the whole I think correctly) believed that pushing back the date of viability was a good thing. Babies have always been born on the wrong side of that line. I had no idea that the ability to keep these babies alive was seen as "forced resuscitation". On the whole, my heart bleeds for people - all of them - caught up in this dilemma. As I have made clear, I have some problems with the way the same statistics can be used to back up diametrically opposed arguments, and, as you make clear in this post, the slipperiness of ethical points. Good decisions can be made for bad reasons, and vice versa. One expensive, suffering First World child or 1000 healthy Third World children? If only it was even remotely possibly for decisions to be that rational, then what? Who decides? My own nightmare slippery slope is that only "perfect" children are seen as having a right to live. Who would want to draw that line?

3:11 AM  
Anonymous Anonymous said...

It is good to have advances in caring for preemies,.. but I think women (myself included) need to accept that sometimes you can bear a living baby that might be better off not continuing to live.
I was born premature in 1981. My birth consisted on an emergency c-section due to an unstoppable, and swiftly advancing, labor. I wasn't breathing. I was airlifted to another hospital where I was in NICU for several weeks before discharge.
I didn't start speaking on time. I went to speech therapy from the time I spoke my first word through first grade. I was hospitalized several times while young (ages 2-7) for respiratory infections that raged out of control. At age 18, I was hospitalized for three weeks with pneumonia, despite meds for my lungs that I take on a preventative basis, and discharged on an oxygen machine (which I was on for several more weeks).
I take 3 medicines everyday to manage my asthma, 1 for my allergies. There are more meds that I take on an 'as needed' basis such as albuterol.
If I didn't have health insurance my monthly bill at the pharmacy would be quite intolerable.

Today, waiting for an appointment for a respiratory infection to be looked at, I read an article on the impact of the coming of age of autism patients. Parents are aging and have kids, now in the mid teens to late twenties, that have autism to the degree that they will never be able to be independant. Some are non-verbal, others are better off, but all are dependant on their parents, or the government, to provide for their care. The problem is that money the government provides these families for care stops when they turn 21. In addition, if the parents pass, to whom do they leave the responsibilities of caring for the adult autistic person to?

It's a sad, hard situation. The autism rate is still rising. I would never advocate that a child born healthy and viable, but with autism, be left without medical care to die... but those who have a slim chance and/or require resuscitation at birth and run high risks of physical or mental defects requiring lifelong care???

How many people like this can our society support? DO you really trust other people to have the deep bond with your child to care for them as you would like to see them cared for after you are gone? Can others see to their needs adequetly?
More importantly, how many of these unfortunate children WILL our society support? At some point, the government will start making choices,.. and it won't be "less for the war, more for alzheimers, autism, preemie, cancer, etc research" it will be "more for preemie less for autism" or "more for cancer less for alzheimers" or "less for all, do the best with it that you can"...

Is that enough?
What is all those parents who die and leave behind dependant, although adult, children behind? Will the state stick them in state-run nursing homes? Long term facilities? Psychiatric facilities? Or will they have such a need that they will create a specialized care facility for them.

I have a friend who's brother is autistic. Her parents worry about burdening her with his care, and they've looked into options. There are options that would allow him to live in a community with other autistic men and women with care provided by voluntary caregivers. They are assigned daily tasks in their community based on ability and on need. They grow gardens, harvest food, do arts/crafts, weave, tend animals, cook, etc..... but the costs to have your child in such a facility at adulthood/after you are gone is immense.

I can't help but wonder, and feel saddened, when I think about what the future holds for the mentally disabled children of today. I want them all to succeed. To prosper. The more I see of our culture today, I doubt that enough people will 'step up to the plate' to take care of them when they need it most.

3:47 AM  
Blogger Dr Dork said...

Hi NeonatalDoc,

Such synchronicity in the blogosphere..I started writing a post about Malaria earlier today...and had put it aside for awhile as it was getting so long - my longest ever by far - when I spotted this !

It is indeed saddening that such an eminently preventable and treatable condition kills so many.

Just my opinion, but I would suggest to some of the commenters above that the issue is more about disparity of resource distribution than any of your individual situations. NeonatalDoc gives an example relevant to what he knows. He quite clearly, to me, is NOT saying we should stop resuscitating babies when we DO have access to quality first world care. Quite clearly.

We could make the same argument when, for example, demonstrating how many lives might be saved in lieu of the cost of heroic measures at the other end of life - especially when driven by defensive medicine and not the best interests of patients.

But that's another story...

NND, you don't happen to have a link to the story perchance ?

Dork

5:06 AM  
Anonymous Anonymous said...

If not for $500,000 preemies, you wouldn't have the disposable income to think about donating mosquito nets. Just food for thought.

5:55 PM  
Anonymous Anonymous said...

Here's more food for thought. I remember opening a newspaper one day and seeing the earnings of the top ten movies that weekend. I remember they added to over a hundred million of dollars. For ten movies in two days.

Rather than letting sick babies die, maybe Americans could donate $1 for every movie they see? $100M dollars divided by $10 a ticket times $1 per person is $10M raised in two days.

I just don't see why we should consider channeling money from sick babies, rather than superfluous luxuries like entertainment?

6:02 PM  
Anonymous Helen Harrison said...

I suggest that NICUs and neonatologists be in the forefront of raising funds to support humane, high-quality life-ling care for the impaired survivors of their units.

NICUs are often major "profit centers" for their hospitals, generating revenues that subsidize the less-profitable areas of the hospital. (There is, therefore, a major financial incentive -- at least in the US -- for hospitals to fill NICU beds.)

Anyone want to start a "NICU Profits for Adult Preemies" campaign?

6:47 PM  
Anonymous Anonymous said...

In my experience it's not the docs but the parents who push for saving kids on the line ... the 24 weekers, etc. I haven't met many parents who don't want their 24 weeker saved.

10:10 PM  
Anonymous Anonymous said...

Yet another tasty morsel. Why don't you and others like you be the channel to get those funds from $500,000 NICU babies into mosquito nets and ,alaria treatments? That $500,000 goes mainly to you, the nurses, the hospitals, the pharmaceutical comanies, etc. You, the nurses, and the hospital administration have a significant chunk of that $500,000 in your hands - you really could channel a significant amount of money into this project. That way you get to save both teh NICU babies AND the African babies.

10:30 PM  
Anonymous Helen Harrison said...

Anonymous said s/he had never seen a parent who didn't want their 24 weeker saved.

I can introduce you to many parents of 24 weekers (give or take a week) who spoke out, whose decisions are documented in the charts, and whose decisions were ignored. Several are here reading this blog, and I hope they will share their thoughts.

10:33 PM  
Anonymous Helen Harrison said...

One more point, would it be too much to ask people who are posting to the blog as "anonymous" to put some identifying intials (they need not be your own) on your posts? We have so many people posting anonymously, that it would be helpful to be able to refer to the specific "anonymous" one wishes to address.

Thanks.

10:46 PM  
Blogger terri w/2 said...

"In my experience it's not the docs but the parents who push for saving kids on the line ... the 24 weekers, etc. I haven't met many parents who don't want their 24 weeker saved."

And this may be true. . however, the reason for this is very plain to see - the only perspective that reaches the media, are the "miracle baby" stories. People are inundated with them through the Children's Miracle Network, the March of Dimes, the 9 ounce baby born at Loyola, the McCaughey septuplets, sextuplet and quintuplet stories in general, at Christmas time in the local paper. . .and on and on and on. The average person on the street (and apparently quite a lot of neos) think that these children are going home from the NICU in fine, fine shape. Parents of these children - the ones like mine (former 25 weekers, now 21)who are moderately and severely, multiply disabled don't go on the Children's Miracle Network telethon (frankly, children like mine are never invited - these hospitals KNOW which kids will generate fund raising dollars and which won't).

So. .if people only hear one side of the story - and it's packaged in miracle terms, why would you think it's unusual for the average parent to come into L & D at 24 weeks and want everything done? THEY think their child is going to be that miracle child too.

In addition, we have a mentality out there caused by a faction of society - the extremists who cannot see that sometimes death is a blessing, a natural event that sometimes should be welcomed and perhaps encouraged (I believe the Netherlands have it right, btw), but when the situation involves an infant, even though the course of the situation is an act of God, right away, if there's not a full-blown effort to do everything, it's killing. And parents are VERY uncomfortable with that idea, even though they may really believe deep down it's in their child's best interest. Allowing a child a natural death without intervention, or removing life support from an infant with a grade IV bleed is not killing. It should be allowed and accepted in every NICU in this country. And, unfortunately, it is not.

3:25 AM  
Anonymous Claire said...

What I find particularly objectionable about this discussion is those who see themselves as the "realists" constantly assuming the hold some moral high ground or Greater Wisdom. Parents want to save their babies because they have been "fooled" by some miracle baby story? Give me a break! This is an insult. And, by definition, there are extremists at both ends of any argument. Extremists are very easy to ignore. It is the people who clamour for laws or strong guidelines that limit my choices that are to be feared. Grey areas can not be turned into black and white issues by wishing it would be so.

5:11 AM  
Anonymous Anonymous said...

Neonatal Doc's original point, when he wrote "Malaria," was, I believe, the notion of allocating or re-allocating scarce resources.

IF $500,000 could actually be pulled out of the hopsital's and insurance company's pockets--and until the check is cut, it is only an accounting sum, not real, tangible money--in order to send it to a 3rd world county with an epidemic on their hands . . . I think it is correct to believe that it is NOT a happenin' thing.

Like the gazillions that are going toward a war that 70% of the American people do not believe in, we cannot take that money and put it where we really want it/need it . . .

Where to go from here? Bill and Melinda Gates fund these kind of ventures, singling out health concerns in 3rd world countries.
From what I can see, the money, all the money really goes to the project, rather than being diluted by middle-men.

I applaud this larger picture viewpoint in Neonatal Doc and in the Gates Foundation. Those who care deeply can find a way to channel some help to the causes they believe in. It has nothing to do with preemie-dom. The fact that alarming amounts of healthcare dollars go to save a single child is simply one of the out-of-proportion things in life. If parents choose (and I am all for parental choice) to have everything done, a half-million or a couple million is in that bargain. So be it.

If I could redistribute resources according to my own lights, I would take from the war and give to the healthcare (a la Robin Hood) . . . I often think of writing a letter in my April 15th tax form, saying I refuse to pay taxes that support a war I cannot believe in . . . but I haven't had the guts to do it---yet.
CAK (Chris and Vic)

7:27 AM  
Blogger terri w/2 said...

Clare, I agree with you completely when you said "It is the people who clamour for laws or strong guidelines that limit my choices that are to be feared." It is NOT a black and white issue, however, there are laws and guidelines in place here in the U.S. that ARE being interpreted to over-ride parents decision-making and our choices.

When you are faced with an extremely preterm infant with a massive brain bleed - and make the decision to withdraw life-support, which I believed to be in her best interest, this should have been respected. It was not. The neonatologist denied our request to do so. Our daughter suffered massively in the NICU. She suffers massively 21 years later with uncontrolled status epilepticus seizures, severe cerebral palsy, etc etc. She is facing a major surgery on Tuesday to place a rod in her back the length of her spine to keep her upright. She has profound MR, so will once again, have no idea what is happening, only that she is in terrible pain. I feel it is torture to put her through this, and we should have had the right to withdraw life support following her massive brain hemorrhage at 25 weeks, 21 years ago. Instead the medical merry-go-round from hell is still operating 21 years later.

On the other hand, her twin sister blew through the NICU. She was supported with a ventilator, but mostly CPAP, few episodes of A/B, but that was pretty much it. We did not request for her to be d/c'd from life support, as everything seemed pretty stable with her. However, she too is now disabled with high-functioning autism (Asperger's) and mild-mod CP.

My point is, is that when only one side of the issue is talking "the miracle baby side" - how is the average person influenced to understand that there even IS another side? I am even seeing this in nursing school. We had an OB nurse instructor who works in a level III hospital who was glamorizing saving preemies without talking about the other side of it. So even my fellow nursing students walked away from her lecture thinking that all was well in the baby-saving world. Why would the average parent think any differently? I'm not saying parents are ignorant or stupid or any such thing - they simply have no knowledge, because it isn't being discussed. It feels like the olden days when people with severely disabled children would hide them in the attic - our children's suffering and disabilities are being negated and hidden from the public.

7:47 AM  
Anonymous Anonymous said...

Helen, I am anonymous 6:02, 6:47, and 10:30. Any other anonymous posting is from someone else.

8:29 AM  
Anonymous Anonymous said...

Terri, who is death a blessing for? The parent who no longer has to have the physical/emotional drain of caring for a disabled child? Or the child himself?

I know quite a few ex-24 to 27 weekers. 15 in fact. Of those 15, two have cerebral palsy but are able to walk with a walker. Their minds are fine, they are sweet adorable children. The rest of the children are all perfect like you and me. Would death have been a blessing for them?


I am NOT an advocate for saying ALL 24 weekers must be saved. But I am deeply opposed any time the idea is suggested that perhaps it shouldn't be the parents' choice because they are blinded by miracle stories or whatever. Perhaps those who want to take the choise out of parents' hands are blinded by their desire to create a disability-free world? It is the parents' choice. Many religious parents know full well that their preemie might have a disability, but they want their baby to live. Not everybody is so naive about the realities of preemies.

I willl tell you a personal example. I have three preemies, but not 24 weekers. I do want another child. I am aware that with my history I am at risk for having a 24 weeker. I am aware that there is a large probability of disability. I accept those probabilities and pray that God give me the right child for me, regardless. That child will be loved and cherished no matter what happens. I don't want the government to ever be able to step in and say I can't choose to let the baby live, just as I don't think they should step in and tell you or anyone else to not rescucitate.

It's about leaving the choice up to the parents. If you feel that some parents are too naive to make this choice, then start educating them, rather than deciding for them.

And yes, a preemie is entitled to a lengthy and expensive stay in the hospital at great expense, just as my older children asre entitled to that and I am entitled to that and anyone else who is sick is entitled to that.

8:43 AM  
Anonymous Anonymous said...

P.S. I am anonymous who listed right above this post the times of earlier posts.

8:44 AM  
Anonymous Anonymous said...

P.S. ONe of the two children with cerebral palsy was a 27 weeker, by the way. NOT a 24 weeker. One of the fifteen micropreemies I know was less than a pound at birth. Even at 12 months old, a pediatric neurologist at a major medical center in Manhattan said she'd never be normal. She is now a teenager and not only normal in every way, she's very smart. And my mother knows a former 1-pounder who is a concert pianist and went to Harvard. Is it better to not rescucitate these babies because - egads! - one of them might have a disability?

8:48 AM  
Blogger Sarabeth said...

I know two boys who are "poster children" for the March of Dimes. They were born at 28 weeks, one was just over 500 grams with the other being just barely 1000 grams. At the age of five, one child is quite normal by any standards, although with shorter stature on growth curves. The boy who had the lowest birthrate is clinically blind and has some neurological issues. It is doubtful that he could ever live without assistance, but that may change with time. Our local chapter of the MOD does not worry about showing him to the community. He is not hidden away so that others cannot see the negative side of intervention.

I do agree that many poster children are too normal thereby painting a rosier picture than is necessary. I thought I would point out a situation in which the more gritty side was displayed.

11:04 AM  
Anonymous Anonymous said...

I come from the financial side in a hospital. I manage the database of all the charges in our entire hospital, and while it is a nice thought that we "take" the $500,000+ used to treat preemies, that money doesn't really exist. On paper, yes, the bill comes out to $500,000, but the hospital doesn't see that, nor does the hospital spend that. The charges you see on a bill are calculated as a certain percentage increase over fee schedules, so it would appear the hospitals are making money, but then through contracts with insurance payors and Medicaid, that amount is highly discounted. If you are a self-pay patient, its discounted even more. So, in reality, the hospital doesn't get $500,000+ per NICU patient. This is the way it is at our hospital, anyway, and take into consideration that we are non-profit.
I like the idea of taking money away from the film industry much better.
-MDR

1:39 PM  
Anonymous Helen Harrison said...

From a neonatologist, Thomas Simpson, writing in
Cambridge Quarterly of Healthcare Ethics 8 (1999): 524-6.

“Neonatology, [has become] the most lucrative practice of pediatrics, . . . [one that has] made many neonatologists very wealthy.” Simpson goes on to say:
Institutions and individuals have rushed to enjoy the newfound source of wealth. The billings, in dollars, are heart-stopping. It has become increasingly common to generate bills in excess of a million dollars for the care of an ELBW infant. . . . Is there any wonder why other caregivers, lawyers, HMOs, and parents question the neonatologist’s motives for resuscitating infants who have as little as 10% chance of survival and a greater than 50% chance of a severe, life-long disability if survival occurs?

2:25 PM  
Blogger terri w/2 said...

Please read my posts again, you will see that my concern is immense suffering. I'm not advocating killing people with disabilities.

And besides, removing life support from someone with a massive brain hemorrhage and full ventilator support is done in hospitals daily for the elderly and it's not called killing, it's called allowing nature to take it's course. Why should our infant children be forced to endure what the elderly and even animals are not forced to endure, simply to survive?

3:06 PM  
Anonymous Anonymous said...

At Cedars-Sinai, I was given the choice for dnr or ending treatment (for a 25 weeker) if there was a severe IVH. We made the call that we'd do so at a grade 4.

The neonatologists were extremely respectful of our choices and made an effort to understand us as parents. I never saw any of them as motivated by money and understood that they were trying their best to help families.

3:40 PM  
Anonymous Anonymous said...

neo doc,sure are a lot of 'bad vibes' from some of the posters.the hatred is palpable.AND the ones espousing all this negativity have in no way comprehended what you wrote in your post

3:42 PM  
Anonymous Anonymous said...

anon 342 again here.the neos earn every last red cent they make.sorry if you don't feel the same,negatoid posters.

3:44 PM  
Anonymous Anonymous said...

I don't have data here, but I would bet the vast majority of these 23-25 wkrs born in the US are born at tertiary medical centers...the vast majority of these tertiary medical centers are academic places (i.e. a medical school location). Neos working at academic facilities DO NOT get rich, nor are they in the profession to get rich...Business school is a better option than medical school!
NGB

4:00 PM  
Anonymous Helen Harrison said...

In the words of another neonatologist, Dr. Mildred Stahlman, at Vanderbilt University Medical Center:

"Untried and uncritical methods, treatment regimens, and dogma grew up around high-risk care as more and more young physicians, nurses, and...paramedics, such as respiratory therapists found challenge and excitement in the neonatal intensive care unit...Consultants abounded with no one person thinking about the baby as a whole and understanding the complex interactions of multiple medications, technologic data and consultants' advice. No wonder parents have been left with misunderstandings, misinterpretations, fear, false hope, and frustration, sometimes culminating in litigation...

"The costs of neonatal intensive care have spiraled out of sight as we have sought to salvage the unsalvageable...hospital administrators and the suppliers of technology and drugs, as well as neonatologists, have found that neonatal intensive care *can* be highly remunerative...We must realize that there are powerful political and financial forces, both within our profession and without, that will work to keep high technology "king."...Greed and self-interest are powerful lobbies."

Stahlman, M. _J Pediatr_1996;129:490-2.

4:37 PM  
Anonymous Anonymous said...

Helen--I personally know a few of the doctors who were the pioneers in neonatology. All of them would have made the advances they made if paid just a small fraction of what they earn. None of them are greedy. All of them discuss the ethics of their chosen profession many times over.

Do you really believe that these doctors muddy the information given to families so that the NICU can stay full? Do you really hate the profession that much to think that the majority of RTs, nurses, and other life-saving staff who work in the NICU feel this way?

--SLT

5:01 PM  
Blogger WendyLou said...

My daughter's NICU bill was close to 100K.

She was worth every dime.

So are the children in Africa.

Life is not fair.

Because my child came to a home in the United States, she got life saving intensive medical care.

Because a child was born in Africa, they don't get clean water and a $10 net.

Life is not fair. No way to ever change that.

5:45 PM  
Blogger neonataldoc said...

First, I'd like to explain to some of the commenters that much of the discussion here is in reaction to an earlier post. We could talk a long time about when to resuscitate babies and so on but we'll have chances to do that later when I write a post related to those issues. This post was about malaria and the inequitable distribution of resources, so I'll restrict my comments to those subjects.

Anon 5:55: Touche!

Yes, HIV is a huge problem in Africa. The article says that malaria infection increases the likelihood that an HIV infected individual will transmit the virus to others. Bummer.

Dr. Dork here's the link to the article: http://www.time.com/time/magazine/article/0,9171,1574152,00.html

By the way, more than 90% of the patients in my NICU have Medicaid for insurance. A profit center? Don't make me laugh. Medicaid doesn't even always cover our costs. I realize, though, that some NICU's with a better payor mix will make profits.

5:49 PM  
Anonymous Anonymous said...

As a NICU nurse I ask myself everytime a parent has to make the decision to withdrawl care or allow only comfort care for their preemie/child--"What would I do if it were my child" I really do not think I could make that decision. People cannot pass judgement on the Docs or parents because they have not been in their shoes. I know alot of our Docs say they don't know what they would say if it were their child as well. Even seeing the good results and the suffering, I don't know what I would do. And no, the nurses and docs don't get a huge chunk of the $500,000, most of us would do this for free. There are alot of people who make much more money than we do for doing alot less, and no stress!

6:23 PM  
Anonymous Helen Harrison said...

Anonymous said...
Helen--I personally know a few of the doctors who were the pioneers in neonatology. All of them would have made the advances they made if paid just a small fraction of what they earn....

Do you really believe that these doctors muddy the information given to families so that the NICU can stay full? Do you really hate the profession that much to think that the majority of RTs, nurses, and other life-saving staff who work in the NICU feel this way?

--SLT

To SLT:
I am quoting what *neonatologists* themsleves have said about their own profession. These are not *my* words -- I am quoting directly from neonatologists Dr. Mildred Stahlman, and Dr. Thomas Simpson, and I can keep the quotes coming if you wish...

I too am personally acquainted with the pioneers of neonatology, and the comments I have quoted (from their own publications)clearly do not pertain to them -- they pertain to the new medical-industrial complex that has grown up around NICU care.

As for my personal thoughts, I believe most parental disinformation comes from neonatal staff who simply don't know (or don't want to know) the documented outcomes of prematurely-born children.

NICU staff seem to have an intense (and very human) need to give happy news to new parents (whether or not it's appropriate), and, in doing so,to feel good themselves. (But greed has been mentioned by so many neonatologists about their own profession, that I don't totally rule it out.)

Whatever the reason, the number of parents who have written to this blog, shocked and angry about widely acknowledged data argues eloquently for the fact that these parents were *not* properly informed.

And the fact that some of them feel that knowledge of the high risk of handicap has left them unable to "bond" with, or properly parent, their preemies, indicates that they might have made different choices if they had been fully and accurately informed.

And that is *all* I am asking for: I just want neonatologists to look at the full spectrum of seriously disabling outcomes; inform parents about them; and honor their choices (regarding micropreemies, in particular) for declining resuscitation and aggressive treatment, should the parents *choose* not to have it.

However, the notion that some parents might *not* choose it, has seriously unhinged some of the posters to this blog. The "hatred" I see is in the posts of those who make ad hominim attacks on anyone who dares offer facts or opinions that they don't find convenient or comforting.

This is a discussion of "Malaria" as Neonatal Doc points out. But the example of malaria is given to stimulate discussion of financial priorities in life-saving and health care. My posts have been relevant to that discussion.

6:47 PM  
Anonymous Claire said...

To Neonatal Doc: I think it is a bit disingenous to say that your thread was "about" Malaria only. Your point was the comparitive costs and benefits of First World v Third World medicine, and the unfairness of life. Given that it followed on from the post that provoked such polarised views, it was inevitable that some of us would hijack it.
To Helen Harrison: To talk frankly about the "facts" of this situation may well be doing a valuable service, but rational people would be more likely to heed your message if you were a little less strident. Your comment

"However, the notion that some parents might *not* choose it, has seriously unhinged some of the posters to this blog. The "hatred" I see is in the posts of those who make ad hominim attacks on anyone who dares offer facts or opinions that they don't find convenient or comforting."

does your case no service. People who disagree with you are NOT "unhinged" - they are just people who disagree with you! You are not "daring" to give us hidden facts, you are interpreting disputable statistics in a way that supports your case, but does not demolish the case of your opponents. And as for Ad Hominem attacks - words (almost) fail me. You accuse doctors of greed and parents of stupidity. You dismiss the lives of "survivors" as worthless.

People make good choices for bad reasons, and vice versa. No-one is suggesting that all damaged babies can survive, or that those that do aren't at very high risk. By all means tell parents without sugar coating. But they don't need bile and acid, either. Let the parents choose, unless they are choosing certain and devastating suffering unknowingly. Many posters on this thread have shown that the outcomes are not certain, and not always devastating.

I am not religious, I am not blindly "pro-life". I am against doctors, or anyone, playing God. I just have a big problem with the idea that the "tiddlers" should be thrown back.

5:16 AM  
Anonymous Anonymous said...

I am the NICU grad from 1981.

I am sorry for getting off topic, but I felt the need to post as I can see both sides of the issue.

Am I glad that I am here? Yes. Did I require medical intervention and resus. in order to survive past birth? Yes. Were my parents given warnings that I might have brain damage due to certain treatment measures? Yes.

What I know about those times following my birth, and the reasons for being airlifted to a specialty childrens hospital in Phoenix, I know from my father.
My mother doesn't want to talk about it. She doesn't remember much from the time of the c-section. She still hates the fact that my father took pictures of me in the incubator and oxygen tent, naked and red, bruised all over the feet from lines and blood draws, with various tubes running everywhere. She hates the fact that he took those pictures.

I don't like them either.

Am I glad I am here? Yes. DO I expect to have some degree of success in my life? Yes. Have I achieved a degree? Yes, and I am partly done with an MS at a good university. I assume I didn't experience much, if any, of the brain damage that my parents were warned about.

On the other hand...

Did I ever suffer a brain bleed? No. Did I have a fairly normal trek through the NICU? Yes. DO I think my parents, in particular my father (the ultimate cheapskate in most cases) would have approved of going to all lengths to save me even if the prognosis for any form of normal life were low? No. I was born at what was considered a generally viable age. I was not considered at the border of viability. I was a preemie that just didn't come out thriving.
I don't think my father would have been able to handle a child with severe mental retardation. He had a hard enough time dealing with young children as it was.

I know you cannot say "this 500,000 that used to be spent on super-preemie care will now go to HIV or malaria treatment in Africa".

I highly suggest checking out the babycatcher blog about a midwife in africa.

http://babycatching.blogspot.com/

She's an interesting writer documenting an interesting, sad, and fascinating situation in another part of the world. It puts things in prospective.

I do think that the awareness of the problem in Africa needs to be increased. We see celebs supporting the end of violence and genocide in Darfour, we see other celebs (notably Angelina Jolie and Madonna) adopting children from Africa.
However I don't see any celebs or any major notoriety being drummed up for malaria prevention. HIV in Africa is being addressed on and off in some major media outlets... but I don't think it is being given the trumpeting it needs either.
Who's doing news stories documenting the AIDs orphans (parents died of aids) living in cardboard shacks and trying to raise each other, with no relatives left to help them?
Who's showing pictures of young children or even adults dying of malaria, a curable problem, and telling their stories?

I try to figure out my taxes each year before the new year hits. I usually do not owe anything, but if I am going to owe anything I start looking for NFP organizations that I feel *need* the donations the most and are addressing life or death issues to donate to.

I used to donate almost exclusively, for tax reasons or no, to humane shelters in the US. This year, even though I don't owe anything, I sent $150 to an organization that helps poor africans. Perhaps I felt guilty after reading the blog of the midwife in a third world country. Perhaps I was just made aware of a situation that is killing babies, and young children, daily.

I can't save the world. I can't force others to give a portion of their entertainment budget or vacation savings to help people in third world countries. I can, however, try to set an example. I am a college student, and I'm not making enough to take fun vacations or gamble or spend much money in an irreverent manner- but I gave what I could.
Can you do it too?

I'm not trying to sound cocky or better-than-thou. I can't start making all of my purchasing and financial decisions based on those poor souls in Africa or elsewhere. I don't regret the book I bought last week for personal reading material, or the chai tea I had at the overpriced coffee counter in the bookstore. What I have promised myself I will do is simple, I will try to make donations that fit my income level to help those who don't have the opportunities that I do.

I'm just a young adult trying to grow into my role in society- a role which will hopefully help make the world a better place.

5:17 AM  
Anonymous Claire said...

I can't get off this thread. It has been fascinating to read, and I have been given much food for thought. The mother of twins who finds society and "friends" rejecting - yeah, I can identify with that. I have had similar experiences. I just happen to believe that the problem is society, not my child, and like another poster I will fight to change that. May I add another perspective? I think part of what governs here is the Law of Unintended Consequences. When my daughter was born, I was working in an administrative job of no great value to society. I payed my taxes, I did no harm, and not much good. Prevented by my daughter's needs from returning to this, I eventually re-trained as a teacher. I have spent the last 20 years teaching adults (part-time). Helen, you are a powerful advocate on a subject you are intimately acquainted with. Of course I am not suggesting that this somehow justifies the suffering of our children - just that the world is a very complex place, and making a plea against simple, knee jerk solutions.

9:56 AM  
Anonymous chris and vic said...

To the 1981 NICU grad:

Though you don't say so overtly, I read your post as an expose on Quality of Life. You use the word success . . . and talk about your academic life, your altruism in contributing to the least publicized of the needy---and you also talk about your father, who was ill-equipped by temperament to deal with a child with special healthcare needs.

In my own Masters studies in nursing, we were discouraged by our instructors to try to unravel Quality of Life. It seems to be beyond reach because it has so many definitions . . . octopus-like.

But I see, on the NeoDoc's blog, that we are reaching for meanings.

When my son Vic was having his 8th shunt replacement in his first year of life, his neurosurgeon made a decision to let him go if anything went amiss during surgery. (We--the doctors and the birth mother--had already decided to let Vic go at 3 months, since the first 2 shunt replacements hadn't worked . . . but somehow the decision was being revisited. I had gone along with the original decision, but as foster mother, I wanted a part in the decision being made right then. Actually, I didn't want to let Vic go.) I took my case to the pediatrician, and we had a discussion on Quality of Life. The ped, who saw Vic very frequently during that time, stated that he saw a child with high quality of life, since Vic was experiencing the full range of human emotions---joy, temper tantrums, affectionate give-and-take . . . I decided to take my case further, to the hospital medical ethics board---even though I was "only" the foster parent, with no official decision-making rights. As it turned out, I didn't have to follow up with the ethics board, since this was Vic's last surgery and nothing happened in surgery that wasn't routine.

NICU graduate of 1981, you really did tell us a lot about your quality of life. Even the fact that you can see both sides of the argument speaks about how you must have lived/be living your life right now.

Those who are charged with making decisions about allocation of resources or resuscitation of preemies have to have thought through Quality of Life; what they themselves stand for; what they believe they can accomplish and be successful at (such as raising a child with disabilities--or not-- or getting your MS or being a doctor or researcher). It is complex.

Neonatal Doc, keep us going with comparisons, analogies, observations about human nature and human behavior. The self-reflection that issues from these discussions will lead to insights about choice, quality of life, fairness, etc.

I myself am loving the debate, the challenges to my ways of thinking, the pleas to see the other side. Every post has made me stop and think. Thanks to everyone who contributes!
Chris and VIC (CAK)

11:46 AM  
Blogger terri w/2 said...

I too, have been impressed by you, 1981 preemie. Clearly you can make the argument that your life was worth saving, albeit some health issues you continue to battle. You see the other side too - that if you had been damaged neurologically, that it would have been too much for your parents to deal with. I wish nothing but the best for you as you pursue your life. You are an amazing, thoughtful being.

12:20 PM  
Anonymous Helen Harrison said...

To Clare:

I thought you had agreed to disagree with me, and that's fine with me.

But since you continue to misrepresent my views and attack me for things I haven't said, I must try to correct the record.

The accusations of "greed" in the neonatal profession came, *not* from me but from other neonatologists. I directly quoted them.

I have never said that parents are stupid or their childrens' lives worthless. those are *your* words, and your own interpretation.

Reasonable people disagree about whether or not micropreemies should be treated aggressively. I am simply advocating giving parents the right to come down on either side of this disagreement.

I haven't selectively reported the statistics -- go check them yourself.

"Facts -- they're what upset the 'truth' that's in our guts." --
Steven Colbert

1:32 PM  
Blogger purple_kangaroo said...

I'd be interested to hear more about that new malaria medicine. Since malaria medicines haven't been able to be taken long-term before, that complicates prevention. I have a number of family members who are Americans living in Indonesia and other countries where malaria is common.

Even with all the advantages of insect nets, bug spray, etc. they have all caught malaria. Some of them have come close to dying of it more than once.

Preventing it seems not to be quite that easy.

8:09 PM  
Anonymous Anonymous said...

neonataldoc, your post *was* about resuscitating babies:

"So what are people with a conscience to do? Frankly, I'm not about to stop resuscitating premature babies, especially when parents and society tell me I should resuscitate them, but I can stop ignoring the malaria problem and donate money for nets."

9:13 PM  
Blogger Flea said...

Sorry for the irrelevancy:

JFK said "Life isn't fair", not Jimmy Carter.

Best,

Flea

7:43 AM  
Blogger neonataldoc said...

Flea, I think that Jimmy Carter also said it, but I'm too lazy to go look it up!

Purple Kangaroo, apparently the new, inexpensive malaria medicine is derived from an herbal remedy. I don't know much about it. I guess I'm too lazy to go look that up too.

8:02 PM  
Anonymous Anonymous said...

There also comes a point in time when you have to face the fact that we are dealing with beings that, like those very old people in nursing homes, may not be worth resusitating, may not be worth dumping all these resources into.

If it is a baby that is on the border of viability, but seems to do better than expected- I can see why parents argue to save them. If it is a baby that is clearly not doing well- I feel treatment should be ceased. Perhaps there should be a 'line in the sand'. If you look at it from another perscpective... if an 85 year old woman gets cancer- do you treat even though docts think there is an 80 percent chance she may not make it through treatment? Or do you cease treatment? What is treatment doing for the person? If a preemie is doing badly and the outcomes, if the baby lives, are expected to lead to a reduced quality of life (I am not saying no quality of life)... is it worth it?

It saddens me to see parents accepting *any* life as the best for their kids. It saddens me that when Bush was in office there was a period (I am not sure if this still stands) where any non-profit health organization that offered abortions as one of it's services cut off from aids. Organizations that served those nations where children starve to death daily can no longer offer an abortion to the lady who cannot even keep the suckling child at her breast nourished.

When did we switch from accepting any quality of life from accepting good quality of life?

The truth hurts, and life isn't fair, and that is why we need to understand that, as a society, there is a limit to how many special needs children and adults we can support.

Parents can say "save my baby at any cost" but most of these people will be relying on the goverment to educate, medicate, care for, and ultimately, once the parents are older, house these preemies.

Economically, eventually, there has to be a line drawn. If it's not drawn in preemies, it will be drawn elsewhere, such as in care for the elderly. It seems that more and more sections of society are expecting the government or others to provide for them. I agree that there needs to be a support system for times of need, but too many people are using the system for long term financial support.

Where will the line be drawn? I would personally rather be assured that the elderly of America, those who have birthed our current working generation, those who have built what currently exists in this country, those who have family and friends that would miss them... are taken care of.

It's a matter of choices.

If I faced such dismal chances for a life free of disabling defect, I would hope my parents would have let me slip away. Should I ever face the situation myself, I have promised myself that I will give my child peace.

There are so many unadopted children in our system currently, I just can't justify the selfishness of saving a child with such poor chances.

We don't have to go to Africa to see harm befalling children. There's plenty right here in America.

12:16 AM  
Blogger Interrobang said...

Malaria is one of those diseases that has practically no significance in America...

...yet, and also within the last century or so. Large amounts of North America used to have endemic malaria in the 19th Century, even as far north as Ottawa, Ontario (45 25 15 N latitude) -- in 1832 there was a malaria outbreak there among workers on the Rideau Canal. With climate change and the resurgence of insect-borne diseases, is it all that much of a stretch to imagine that malaria may very well become a problem here again?

Coincidentally, I was a low-birth-weight preemie born in the mid-1970s, and I'm not especially happy with my health outcomes. I feel like I had a few good years in my late teens and early 20s, but now as I'm getting older, I feel like I'm sick more often than I'm well, and it's extremely fatiguing.

Also, considering my education level (postgraduate degree) and my career experience, the financial penalties of being disabled are staggering. At my estimation, contrastively with able-bodied people in my age, class, education, and gender cohort, were I earning at the median, I'd have made well into the six figures more income in my working life to date than I have.

Quality of life issues for low birth-weight babies? You bet your able-bodied ass. To me, the issue is less about the baby as the adult they'll eventually become. It's all well and good to use heroic measures to keep someone alive, but what happens thirty or forty years down the road? Not an easy question, even in the best case scenario...

12:37 AM  
Blogger terri w/2 said...

Anonymous said: When did we switch from accepting any quality of life from accepting good quality of life?"

The answer is - about 1986 when the Baby Doe Legislation was passed. .this legislation enacted by the Reagan administration (Republican) made it illegal to withhold life-sustaining measures from those infants who might be disabled - thanks to pro-life pressure. This essentially removed "choice" in the situations of extremely preterm infants from the parents.

We had asked for life-support to be removed from one of our twins following a massive brain hemorrhage (she weighed 1.5 pounds) - ironically we are Catholic, and our decision was supported by the Catholic chaplain at the hospital, however the neonatologist refused to honor our wishes.

To say that it is parents that want an all out effort to save their child is not always accurate. There are quite a few parents who have questioned the all out effort to maintain their child's life and have been overridden by their neonatologists/Baby Doe laws. Unfortunately, the support for families like mine is sorely lacking - where is the government support and pro-life help now that my daughter is here - I can tell you they haven't been knocking my door down to help in these past 21 years. (She has severe cerebral palsy, mental retardation, seizures, etc.)

I agree with the last two posters here - quality of life matters - these kiddos don't stay babies forever - they turn into disabled children, and even more disabled adults, which clearly society is unwilling to support.

Not only is the life of the child severely impacted in these situations, the life of the caregiver (usually mom) is severely affected too. These kids need 24/7 care which in most cases bumps mom immediately out of employment. I have not been able to be gainfully employed for over 20 years. Currently I am in nursing school, but only because my daughter no longer resides with me. Starting my career over at 46 is damn scarey.

5:56 AM  
Anonymous Claire said...

To Anonymous: I note with interest your use of the words "worth" and "dumping" in your first paragraph - emotive words that only appear to be value free. You also give much weight to "quality of life" issues - a very rational seeming argument. The problem as I see it though is who gets to decide on what quality of life is acceptable, and to whom? What if I decide that the quality of life of someone born to the teenage mothers described by Neonatal Doc isn't worth having? The problem with drawing lines is the hard cases on either side of that line, and whether that line should be fixed on a permanent or temporary basis. "The truth hurts..." Oh, I love that kind of reasoning. It usually means that my version of the "truth" is in conflict with yours. Personally, I might - might - be persuaded to support euthanasia or population restriction of those who are convinced they alone are in possession of The Truth, as I regard them as very dangerous. Hitler, for instance, had little doubt what should be done to solve the "problem" of the imperfect. But no, that's a bit drastic, maybe a course in clearer thinking would be enough. There is a limit to the number that society can cope with, you say. Really? Do you recommend a quota then? "Too many people are using the system" Oh, you DO want a quota then.

If you wish to see me and all the other parents of disabled people, and disabled people themselves as misguided, that is your right. Tell me I am selfish, and I might bite. You may have good points to make. I am free (still) to disagree with you. Vehemently.

11:03 AM  
Anonymous Helen Harrison said...

To Terri w/2:

There is an article in The Washington Post today on studies linking shortened parental life spans to the need to care for a sick or disabled child.

The stress of of caring for such a child shortens the telomeres in the maternal genes, and to some extent the paternal genes as well, decreasing the parents life-expectancy significantly.

The research was, I believe, done at UCSF.

2:30 PM  
Anonymous medrecgal said...

Wow...all of this discourse about money, ethics, quality of life, etc. has brought me back to the mid 1980s, when I heard for the first time much of the story behind my premature birth back in the early 70s. I heard it not only from family, but from the doctors who found themselves embroiled in the whole debate over what to do about a small, sick baby who needed surgery for progressive hydrocephalus. My father was telling the story 16 years later, and he never forgot those heartless "expert" doctors who told him that I'd either die or wind up retarded and thus recommended I not have the surgery. And when I heard the neurosurgeon himself tell of how my desperate parents wound up in his office because none of the ones at the big city hospital where I was in the NICU would touch me with a ten foot pole... I daresay I admired him for his moxie, even when he didn't really know if the surgery would work.

Yes, I have some "morbidity" from this start in life that has caused struggle, heartache, and not a few migraines, but I am certainly not that horrific vision the doctors painted for my parents.

Sometimes money just isn't the primary issue...not in the hearts of parents, anyhow. And as for the rates of special education services (as mentioned by Helen Harrison), I think that there is a connection between the increased numbers of ever-smaller preemies surviving and the rate of cognitive disability, but that leads me to wonder if those who suggest we shouldn't expend the necessary funds to save preemies beyond a certain point have a particular bias...are only the potentially "normal" ones supposed to be given the chance to survive? (Besides, much of the time, there's no way to know for sure what the outcome of attempted treatment will be. Heard that one firsthand from my own doctors.) Had the original doctors had their way in my situation, I wouldn't be here to write on this blog. Thankfully there was one who decided my potential was worth the risk that I might not survive the surgery, because without it, I would have been dead (or severely cognitively impaired)anyway.

3:03 PM  
Anonymous j.net said...

"Sachs points out how devastating malaria can be - he predicts it will kill two million African children this year - yet how relatively easy it is to prevent and treat with some quite inexpensive tools. Insecticide treated mosquito nets,"

So what will be the environmental impact of these mosquito nets? No insecticide is completely safe for humans (re: the deaths caused by parathion after DDT was effectively banned)
And why not consider a return to DDT? (Sweeney Committee 4-25-72 "DDT is not a carcinogenic hazard to man").
So which is worse? The 30 to 50 million deaths from mosquito-borne diseases since the DDT ban or the chance that DDT will cause cancer in a bunch of them?

6:20 PM  
Anonymous Claire said...

The post from J.net has shocked me out of my response to the initial posting.I saw its "premature babies/malaria" opposition as benign provocation and a false dichotomy. I know little about malaria and a bit about the long term consequences of brain damage and its affect on quality of life. Weighing the costs of one against the other only serves to muddy the waters. However, the clarity of this comment highlights the real ethical dilemmas - "good" decisions - the banning of DDT - leading to bad consequences and how Society, or governments are indifferent, not to the quality of life but to the value of life when it is not expedient to act. At one level, malaria is a simple problem with relatively simple solutions which are ignored out of indifference. I believe that society should be judged by its willingness to care for those who are defenceless. A climate of opinion that sees damaged babies as disposable isn't likely to cast an altruistic eye on the third world.

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