No pediatrician I know has ever liked any of the many over-the-counter cough and cold remedies very much, especially for very young children. There never has been any evidence that they help cold symptoms, and what’s in them (typically a decongestant and an antihistamine) can cause actual harm to children. Risking harm for dubious benefit is never a good trade-off in medical practice. I’ve seen more than a few kids over the years need to be admitted to the PICU because they have overdosed on these medications, either because they got into the meds and took them themselves or because their parents miscalculated the dose and gave too much.
Recognizing the problem, the makers of these products agreed voluntarily several years ago to take the ones intended for children less than two years of age off the market. These were usually various kinds of drops. Did this new policy have any effect? A recent study in the journal Pediatrics, the official journal of the American Academy of Pediatrics, suggests that it did.
The authors looked at emergency room visits before and after the product withdrawal went into effect. They sampled sixty-three representative pediatric emergency rooms across the country. What they found is that the number of trips to the ER for untoward effects from these medications — overdoses or just funny reactions — dropped by half. Such ER visits for children older than two did not change. Of course, as we say, correlation doesn’t prove causation, so it may have been a coincidence. But I don’t think so — I think the new policy helped.
It’s good that ER visits from the ill effects of over-the-counter cold remedies dropped for young children, but there still were too many of them — 1,248 in the sample hospitals. That’s a lot of risk for no benefit at all. For children over two years of age, there were nearly ten thousand ER visits for this problem. That concerns me just as much. Roughly two-thirds of the cases were ones in which unsupervised children took the medicine themselves, but fully a third of them were because parents gave the children the medication. My advice — don’t use these agents unless your doctor suggests them (and fewer and fewer do), and never in children less than four.
Every parent should know where to find the number of their local poison control center — it’s generally in the front pages of the telephone book. Call them if you have any questions about drug effects — they are always very helpful and you might save yourself and your child a trip to the emergency department.
Open most any medical journal, including the most prestigious of them, such as the New England Journal of Medicine, and you will see page upon page of glossy advertisements from drug companies for their products. This has been going on for many decades. Do these ads affect physician behavior? Are we more likely to prescribe ones we read about in ads rather than in scientific reports?
There has always been a concern that advertising, not science, can affect doctors’ prescribing practices. Surely the drug companies think so, or they wouldn’t spend all the money on the ads. They’re not stupid. Now one medical journal, Emergency Medicine Australasia, has taken a stand against the practice; they’ve banned drug company advertising from their pages. In an editorial, they explained why.
This followed extensive debate on the growing evidence about the detrimental effects of the drug industry in medicine. Among the issues discussed were that the industry, one of the most profitable in the world, distorts research findings, such that drug company sponsored research is approximately four times as likely to be favourable to its product than independently funded research; authors of company-sponsored research are far more likely to recommend a company’s drug than independent researchers, and researchers with industry connections are more likely to publish data favourable to a company’s product than those without; selective reporting of results by industry is likely to inflate our views of the efficacy of company products; the drug industry has been shown to engage in dubious and unethical publishing practices, including guest and ghost authorship, and to apply pressure to academics to withhold negative findings; and the industry spends enormous amounts of money on advertising, which has been shown to change the prescribing practices of doctors, increasing sales in a dose-related manner to the volume of advertising.
Doctors, for their part, generally claim that such advertising has no effect at all on their prescribing practices. I know I would deny it. But really, how would I know? Advertisers put enormous effort into sending subliminal messages that work beneath the surface of our conscious radar. I could be manipulated as much as the next physician.
Drug companies value drug advertising in medical journals because it works. It is regarded as highly effective by pharmaceutical marketers, generating at least US $2-5 in revenue per dollar spent, with returns growing in the long term.
Not taking drug company ads has large financial consequences for journals, especially the second and third-rank ones; they more or less run on advertising revenue. The top ranking journals can depend upon high subscription fees; the lesser ones can’t. There are also many journals sent out to doctors that are actually free. We call them “throw-aways.” Trash cans next to the mailboxes in doctors’ lounges are stuffed with them. These can have a useful bit of information in them here and there, but mostly they are massive advertisements for the pharmaceutical industry. Doctors recognize this. But I think we’re less aware of the huge number of ads that appear in highly-ranked journals.
Emergency Medicine Australasia is a foreign journal, based in Australia, and has small impact on American physicians. But the principle they are arguing may well become a trend. I think the internet will help this, since the high costs of printing and mailing medical journals could be dramatically reduced by having the journals online only. Only a small paid editorial staff would be required, since the folks who review and decide on publication are nearly all unpaid as it is. (I used to do that a lot; you get an annual thank-you note — and maybe a calendar — for your efforts.)
I think it’s something to watch closely.
You can now look (here) at Eugene Smith’s fantastic photographic essay about what it was like to be a country doctor in the late 1940s. It was published in the old Life Magazine. I’ve seen a few of these amazing photographs over the years, but it’s wonderful to have them all collected in one place. This one is particularly compelling; it shows the doctor worrying over an injured child. I have a few personal reasons for finding these particular photographs so fascinating.
Smith took them in the course of the several weeks that he followed Dr. Ernest Ceriani around on his daily duties. Ceriani was the only doctor in Kremmling, Colorado. For that matter, he was the only doctor for many miles around. I know Kremmling, and from the photographs it doesn’t look to me that the town has changed all that much in sixty years. It’s still pretty remote — in the Middle Park of the Colorado Rockies, on the other side of the Continental Divide from Denver and its big-city medical facilities. Before Interstate 70 went through, the drive to Denver was a very big deal. It’s still a ways from Kremmling to I-70, but you don’t have to cross mountain passes to reach it. These days a doctor in Kremmling can call for air transport of a patient, something Dr. Ceriani couldn’t do, but air transport across the spine of the Rockies is still not a trivial thing. Even today Kremmling’s physicians need to be pretty self-sufficient, but in Dr. Ceriani’s day he was completely on his own.
The other reason I found these sixty-year-old black-and-white photographs compelling is that they strike a chord in my own family history. A hundred years ago my grandfather and his older brother were the only doctors in a similar small town out on the Western Minnesota prairies. Along with my grandmother, a nurse, they ran their own tiny hospital that was little more than a converted house. I have old photographs of him operating on patients in the 1940s, assisted in at least one photograph by my father, who had just finished medical school and was deciding his own medical career path. My grandfather’s life was very much like Dr. Ceriani’s was.
Those days are long gone, which is a good thing. Also gone are the days when an isolated country doctor had to do the best he could, without help from anybody.
The little hospital my grandfather and his brother built still exists, although it’s moved a few blocks down one of the few streets in the town. In its current location it’s even named after those two pioneers. Their pictures hang in the lobby.
The photos from Life in the link are a stunning glimpse into the past — I suggest you go and have a look.
Courtesy of Sci-ence.org, here are their “red flags of quackery, version 2.0″
I think it’s a quite useful pocket guide. In their words:
If you come upon a treatment or product that seems to good to be true, consult this handy guide to finding pseudoscience, scams, and quack medicine. Remember, it only takes one match to be considered suspect!
There is a shortage of intensivists in the US, both pediatric ones and those who care for adults. Intensive care nurses are in short supply, too. Yet the demand for intensive care services is growing. Part of the demand for adult intensivists is driven by our aging population, but what about children? Why aren’t there enough pediatric intensivists to go around?
I think the principal reason is that our national standard of care for children has changed over the past decades. When I trained in pediatrics over 30 years ago, only the largest children’s hospitals had PICUs. That has changed. The expectation these days is that medium-sized hospitals provide a much higher level of pediatric care than they did in the past, and that includes care of critically ill or injured children. Sometimes this means having a regional transport system so that such children can be rapidly flown to a larger center. But more and more it means that we need to have PICU capability in more places, and that means we need more pediatric intensivists.
Many have wondered if part of this problem can be solved by spreading the expertise of intensivists over a wider area, by taking advantage of all the communication and monitoring capability we have — that is, by establishing what has been labeled a “virtual ICU.” The idea has been gaining ground in adult practices.
How could that work? What most people mean by a virtual ICU is that intensive care doctors (or nurses) can sit in a room and monitor the vital signs, lab results, x-rays, etc., of patients in ICUs in another location. The monitoring doctor could see the patients with a video camera, too. The patients aren’t alone, of course — there are doctors and nurses at the bedside, just not intensivists. When the intensivist monitoring the situation spots something, or if the doctor on site needs advice, there’s the telephone.
Can this work? I have a friend who is an adult intensivist and who has done this for years. He’s enthusiastic about the concept. I’m not so sure about children, though. Maybe I’m a dinosaur, but there’s a fair amount of research that shows that the best way of determining if a child is really, really sick is to have an experienced person say that child is sick. Tests and monitors help, but the sixth sense that an experienced person brings to the bedside is invaluable.
Still, I think some version of virtual ICUs are in the future for children, too. The technology does keep improving, and we simply don’t have enough pediatric intensivists to go around. Looking at the number of pediatricians training to become intensivists, this situation isn’t going to change anytime soon.
The concept of a virtual PICU can also have another role — that of intensivists exchanging information and collaborating with each other. Children’s Hospital of Los Angeles has been running a site intended to do that for several years now.
Pain, in all its varieties and subtleties, is among the most complex of human symptoms. It has been described in uncounted ways by writers and portrayed by actors, but we read or view these characterizations through the lens of the pains we ourselves have had. Even though we all have felt pain, and in that sense have shared the experience with all other humans, it is also unique to us. Pain is both universal and profoundly personal. It’s a complicated subject.
Pain is not limited to humans, of course. All mammals certainly feel pain. Some aspects of the pain response reach far down below mammals in the animal kingdom to quite primitive creatures. How these creatures perceive it, if that is even the right word, is mysterious, but this observation tells us pain has been with us for many eons. That fact alone should tell us it must serve some important purpose.
All of us know that pain comes in many forms. There is the sharp pain from stepping on a tack. There is the vague, dull aching of a twisted knee, the cramping pain in the lower abdomen that comes with the flu, the pounding inside the skull of a migraine headache, the gnawing pain of a toothache. There is the restless pain that persists in spite of what positions you take, as well as the pain that only relents when you lie completely still. All of us could think of many more examples.
Pain is reported to the brain via a dense network of nerve fibers. Think of this network as an intricate grid of electrical wires, because that is what nerve signals are made of — electricity. These wires are of several kinds, but there are two principal ones. They differ in how well insulated they are. Instead of the plastic insulation that protects electrical wires, the body uses a substance called myelin to insulate the neural wiring. Some wires are more tightly wrapped with myelin than are others. Some nerve fibers have no myelin at all. The more wrapping, the faster the electrical signal travels, so myelinated fibers transmit signals faster than those without myelin.
The nervous system uses a series of switching stations to pass a signal from, for example, the end of your finger to your brain. The first of these are in the spinal cord. When you prick your finger, an electrical signal goes from a nerve fiber there, up your arm, and on to a relay station in the spinal cord in your neck. From there, it continues on up your spinal cord to your brain. What happens to it when it reaches your there is fascinating — and complicated.
Pain is a subjective feeling, meaning no one besides yourself can know precisely how you are feeling it. This means no two people will experience pain in the same way; the exact same finger prick may be perceived quite differently by two different people. An injured person can even be initially unaware of his injury because he does not feel it at first. Probably you have experienced the situation in which, distracted by something else, you did not feel a stubbed toe or a bug bite to the same extent you would have if your mind were not focused on something else.
This variability in how pain is perceived, of the discomfort it causes us, is because the simple electrical signal running up your finger from that needle prick gets modulated by a maze of other nerve cells in the spinal cord and in the brain. Some of these influences dampen down the signal, others ramp it up. The result is when it finally gets to your upper brain, where your consciousness lies, all sorts of things have affected the signal, things that are unique to you and your brain.
You have several kinds of nerve fibers in your finger. The ones that transmit the fastest signals, the heavily myelinated ones, mostly are concerned with light touch and position sense, which is knowing where your finger is in space. This makes sense, because these bits of information are things the brain needs to learn as rapidly as possible. If you want to demonstrate this for yourself, close your eyes, open your mouth, and rapidly stick your finger in your mouth. You can do this without poking yourself in the eye because your brain knows, every millisecond, just where your finger is in space in relation to your mouth. These nerves are also involved in the pain response, particularly in blocking some of its input in the spinal cord. When they do not work, the perceived pain from a pricked finger is worse.
The nerve fibers in your finger that transmit pain signals, the ones with less or no myelin insulation, can sense three kinds of things: mechanical forces like hard pressure, hot and cold, and chemical substances. If you pay attention when you whack your finger with a hammer, hard as that may be to do, you can distinguish between them in action. You first feel a very sharp, very localized pain. This is a signal from the insulated fibers, which gets to your brain first. An instant later you begin to feel a more diffuse, deeper pain that is less well localized to the precise spot. This is input from the slower fibers with no myelin.
Another way we experience the difference between fast and slow fibers is when we bark our shins on a piece of furniture when walking in the dark. We first feel our leg hit the furniture — those are the insulated touch and position sense fibers at work. After a perceptible lag, we feel like yowling in pain — those are the uninsulated pain fibers catching up with their messages.
We have two main approaches for treating pain: we can do things that reduce the pain signals coming from the spot that hurts, or we can use medications that confuse the brain into thinking the pain is either not there or is not so bad.
There are several simple things we can do to reduce the pain signals coming up the nerve fibers. A simple one has been known to parents for eons — simple rubbing of a painful spot. Stimulating one set of nerve fibers, particularly the fast, insulated ones, affects how our brain processes sensations. Every parent knows how to do this, although you probably did not know why it works. When your child comes running to you after falling down and bonking her head, what do you do? Generally you rub it, and it really does feel better. This is not just from parental love. Stimulating the touch fibers in the same place where the pain is coming from causes them to intervene and dampen back the pain signal coming from the other fibers. The same thing happens when we rub any body part after we hit it on something.
Cooling the area with an ice pack is another way to reduce the pain signals coming up the nerve network. Yet another is to put a medicine that interferes with how the nerves work right on the painful spot. Examples of this approach include ear drops that can numb the ear drum for a child with an infection or numbing sprays and ointments for a child with sunburn. A dentist injecting a painkiller around a sore tooth is using a more powerful version of these same methods.
The other way to treat pain is to use medications that act directly on the nervous system to alter how the brain reacts to the signals coming up from the painful place. They convince the brain to downplay or even ignore the information. This is how both acetaminophen (Tylenol and many other brands) and ibuprofen (Motrin and many other brands) work. Ibuprofen also relieves pain in another way that acetaminophen does not; ibuprofen can work directly at the site, such as the inflamed finger or ear, to block the production of some of those substances that cause the inflammation. We also have an injectable medication related to ibuprofen, only more potent, called ketorolac (brand-named Toradol).
More severe pain, such as from a broken arm, calls for medications more powerful than Tylenol or Motrin. Members of the opiate family, also called narcotics, are the standard. There are many members of this family, which vary in how they are given, their appropriate dose, and some of their side-effects, but they all work in the same way: they go to the brain and the spinal cord and alter a person’s perception of the pain. They also can alter mood and a person’s level of awareness to things around them. A common oral narcotic used for children is codeine; a common injectable one is morphine.
Even though we give narcotic medications for severe pain, a fascinating thing about them is that they are not really foreign to the body at all. We have similar substances that occur naturally in our body, and presumably these natural narcotics, called endorphins, are performing some useful function inside us, most likely involving pain control. So when we give a child with more severe pain, such as a broken leg, a medication of this type we are really just reinforcing a normal pathway. The presence of these natural substances could explain why some persons, an Indian Yogi for example, can walk across a bed of hot coals without pain because he has learned how to alter his brain’s perception of what is painful.
Pain, uncomfortable as it is, does serve some useful purpose, and in that sense helps a child heal. Pain alerts us that something is wrong and tells us we should try to do something about it. If we cannot feel the pain, worse injury often results. A good example of this is what happens when a person lacks sensation in an arm or a leg. Because he cannot feel there, painful things, such as an ill-fitting shoe, can go unnoticed and lead to injury.
But pain can also interfere with healing. Mild or moderate pain does not seem to affect healing much, but more severe pain, if it persists, can interfere with it. This stems from the effects of what we call stress hormones, substances like adrenaline, which the body releases at times of stress. They are called “fight or flight” hormones because they probably helped our ancient ancestors deal with things like a wild animal attack. Although they can help in times of acute danger, prolonged high levels of these hormones, such as occurs with continuing severe pain, do inhibit proper healing. Researchers have studied this phenomenon in children who have had major surgery, and it is clear that using pain-killers does not just make the children feel better — it also makes them heal better.
Just over ten years ago a report by the Institute of Medicine, a branch of the National Academy of Sciences, more or less launched the patient safety movement with its estimate that medical error was responsible for something like 50-100,000 deaths annually. That’s a chilling statistic. It’s also one that has been disputed as overblown. But overblown or not, since then all hospitals have made intensive efforts to make them safer places for patients, using things like checklists, time-outs before procedures, and many other simple but crucial things to make sure we are doing the right thing to the right patient. So how are we doing? Are hospitals any safer than they were a decade ago?
Dr. Bob Wachter, one of the gurus of the patient safety movement, recently assessed where we are. His answer is no worse at least, probably a bit better, but not dramatically better. You can read his very informed opinion about it here, on the Health Care Blog. His essay is in response to a sobering study that suggested we haven’t made much meaningful progress in the patient safety field. Bob agrees that it’s disappointing we haven’t managed to make things better more quickly. Overall, though he thinks that we’ve turned the corner on patient safety and are at least steadily moving in the right direction. The fundamental problem is that, well, safety is hard.
A lot of this research is with adult patients, not children. My own opinion is that the PICU is, in fact, a safer place than it was a decade ago. Where I wrk, we are using checklists for common PICU procedures, such as placement of central venous catheters. We are methodical and stringent about looking for signs of skin sores in bedridden PICU patients. Our physician order entry is now all computerized, and the computer regularly picks up problematic orders, things like potentially unsafe drug interactions duplicate orders. Once I got used to it (which took a while) I found that I much prefer physician computer order entry to the old way — writing orders out on paper.
So I’m with Bob; I think hospitals are safer places than they were 10 years ago. We still have a long way to go. The most important thing the patient safety movement has taught us is to take a systems approach to error prevention. Because, as the Institute of Medicine titled their landmark study: “To err is human.” Bob summarizes it this way:
But we’re coming to understand that to make a real, enduring difference in safety, we have to transform the culture of our healthcare world – to get providers to develop new ways of talking to each other and new instincts when they spot errors and unsafe conditions. They, and healthcare leaders, need to instinctively think “system” when they see an adverse event, and embrace openness over secrecy, even when that’s hard to do.
I generally put up a variant of this post every year or so because the traffic analysis of this blog tells me that wheezing — what causes it and what we do about it — is one of the most common search terms that bring people here. It’s a common problem, and I’ve written some about it before. The fact that so many people are searching for information about it tells me that doctors may not be doing a great job in explaining what it is. This post will tell you what a doctor means by the word.
“Wheezing” is one of those words which, when commonly used by non-physicians means one thing (noisy breathing), but which means something else when doctors use it. So, when a doctor tells you your child is wheezing, what is she telling you? To understand that you need to know a little about the anatomy of the lungs.
The lungs are made up of two main components: tiny air sacs (called aveoli), where the business of getting oxygen into the blood stream happens, and the pipes that conduct the air down to the air sacs. This system of pipes begins with the largest of them – the windpipe (called the trachea) – in the throat. It ends with the tiniest of them – called the bronchioles – which are just before the air sacs. Think of the system as an immense tree: the trunk, branches, and twigs are the pipes, and the leaves are the air sacs. Here is a picture.
Wheezing is the noise that happens when the small airways have something blocking them. The blockage most commonly comes from constriction of the airways, but sometimes it may be from debris, such as mucus, obstructing the passage. The sound of air flowing past these choke points in the small airways makes a whistling sound – that is a wheeze. Most of the time it is a sound heard when a child breathes out, not in, because it’s more difficult to get air out than in so that’s when the problem is obvious.
We can hear wheezes with a stethoscope, but sometimes they are so obvious we don’t need one. A more subtle sign of wheezing is when a child takes more time to get air out with each breath than he does to breathe air in.
How do we treat wheezing? Since the most common cause is constriction of the small airways, we typically give inhaled medications to reverse the constriction.
Bottom line: when a doctor uses the word wheeze, we aren’t just describing noisy breathing. We mean a specific thing that has a specific treatment.
It’s pretty well known that emergency room use is on the increase. This recent study summarized the trend over the past decade (the complete article is behind a paywall — let me know if anybody wants a complete copy). The authors compared 1997 with 2007, looking at the number of ED visits per 1000 population. They found that the total number of visits had increased from 353 per 1000 persons in 1997 to 390 per 1000 persons. The total increase in number of visits was about double what you would predict just from population growth. So more folks have been going to the ED over the past decade. How many of these were children?
It turns out that the rate among children has not changed significantly over the past decade — it’s stable at 362 per 1000 population. So the past decade’s growth in ED use has come from other age groups. The study found all adults between 18 and 64 years of age increased their rate of use. Interestingly, older people, those over 65, did not.
ED use by insurance status confirmed what all of us have known for quite some time: the uninsured and those with Medicaid have the highest rate of ED use. A patient with Medicaid was roughly twice likely as a patient with insurance to go to the ED for care, and someone with no insurance was half again as likely to go to the ED as an insured person. The reason for this is most likely little or no access to regular primary care, care which would keep them out of the ED. It’s getting harder and harder for kids on Medicaid to find a doctor, largely because the reimbursement rate is so bad. In my state, for example, a pediatrician gets paid less to see a child with complicated health problems than it costs to change the oil in your car.
Another recent study, this one just involving children, examines the issue of inappropriate ED use. After all, if children can get care from a regular doctor, they are less likely to use the ED to get routine care. (Unfortunately there’s a paywall on this article, too.)
The authors examined the characteristics of what they called “inappropriate” use of the ED — essentially things for which, if the child had a regular doctor, they would not have come to the ED. Their findings also confirmed what we would have suspected: poor kids, kids on Medicaid, and uninsured kids — those who had trouble finding a regular doctor — were more likely to use the ED for routine care. ED care is extremely expensive care: the same visit for asthma, for example, is far cheaper in the office than in the ED. But if you’re a parent whose child is without regular healthcare, where are you supposed to go, if not the ED? From the article:
“Specifically, patients identified access barriers in the primary care clinic as the major reason for choosing the ED instead of the clinic. They reported a cumbersome scheduling system, long waiting times for appointments, and no availability of walk-in care.”
All this seems obvious. But sometimes we need actual research studies to confirm the intuitively obvious. And excessive ED use is one of the engines in our ever-increasing healthcare bills.
I’ve written about this topic before, but it’s come up again in my practice and is worth reconsidering.
The principle of autonomy is one of the four guiding principles of medical ethics, the others being beneficence, nonmaleficence, and justice. It means that patients have the right to decide what is done to their own bodies. For children under eighteen, the age of majority, this means their parents decide for them. What happens when parents refuse a treatment that their child’s doctors recommend? (The right of a minor child himself to refuse such treatment is an interesting and knotty related issue.)
If the doctors believe the parents are not acting in the child’s best interest, they can go to court and try to convince a judge that the court should take temporary custody of the child and appoint a guardian who will allow the treatment. I have been involved in cases like that from time to time. Usually they involve parents who, often for religious reasons, refuse a fairly standard medical treatment. A common example is a blood transfusion in a family that belongs to the Jehovah’s Witnesses. The medical treatments at issue are generally standard, well-accepted ones.
But what if the treatment the doctors want to do is a complicated, high-risk one? Perhaps a treatment that was once a highly experimental one, but which is now more mainstream, although not entirely so? What then? Do the parents have to allow the treatment or risk having the courts take custody of their child?
A recent article in the Lahey Clinic Medical Ethics Journal addresses just such a situation — surgery for an uncommon condition known as hypoplastic left heart syndrome (HLHS). This condition is where a child is born missing a functioning left ventricle, a key pumping chamber of the heart. Several decades ago we had no treatment for the condition — babies were kept comfortable, but they all died within a few weeks of life. Then a surgical procedure to treat this condition was devised by Dr. Norwood in 1981. The outcomes from this procedure for the first few years were dreadful, with most children not surviving. Over time, however, heart surgeons got better at doing it and the science of pediatric intensive care advanced considerably, so the majority of children now survive the initial surgery.
But what is in store for them is at least one more major surgical procedure, called the Fontan procedure, which, if all goes well, allows them to live at least through childhood and usually to adolescence at least. Many do well subsequently, although it is common to need additional surgeries. However, for many children with HLHS, their heart fails and they then require a heart transplant to survive. Most children on the waiting list for a heart transplant die before they get one.
The article from the Lahey Clinic Ethics Journal asks if it is ethical for parents, once they have learned all about this complicated and high-risk series of surgeries, to refuse and allow their infant to die. In other words, is the surgical treatment of HLHS so mainstream that doctors should go to court if parents refuse? I know cardiologists who think so, and the author of the article describes such a situation. But I also know several cardiologists who say they would never choose the surgery for their own baby. These are doctors who are in the trenches and know exactly what the Norwood procedure and its subsequent course can mean in suffering for a child. They would not put their child through that. They feel it is preferable to allow a baby to die than to subject a child to years of often painful treatments, only to have a high risk of dying as an older child or adolescent.
I don’t know what I would do. I’m too old to have any more children myself, but I could have a grandchild in the future who is born with HLHS. There is no easy answer to this question. Many medical treatments, bone marrow transplant for example, are now standard after years as experimental treatments. Even if surgery for HLHS crosses that murky divide between experimental and standard, there are others that will confront us with the same question.
For HLHS, I agree with the essayist in the article: I think parents should be allowed to refuse the treatment.
