Tiger v. Dragon

Last month Emily Rapp published a piece in The New York Times about how to parent a child you know will die. Her family's story, entitled "Notes from a Dragon Mom", touches on both the tragedy of knowing you will lose a child and the freedom that knowledge gives you. It is a freedom to focus on each day, to love your son or daughter without becoming needlessly fraught over all the inconsequential nothings so many of us find ourselves perseverating over.

Should we be more strict? Should we have chosen a different preschool? Should we have allowed more or less play time or television or juice? Do these things matter? Not, Miss Rapp tells us, if your child will not survive the first few years of life. It is impossible to read her thoughts without feeling both incredibly moved and incredibly grateful. There is a purity in her tale, a peaceful acceptance, that I believe is only possible because her child's diagnosis, Tay Sachs, does not come with any ambiguity. I do not pretend this is a place the families of children with Tay Sachs do not come to without a great deal of pain. Unimaginable pain. But there does seem to be some degree of comfort in the absolute, the impossibility of treatment or a cure, the lack of shades of gray.

It seems to me much harder, on the other hand, for those families I meet who do not have that certainty. How do you parent a child who may live for five years or ten or fifteen? The article does not tell us. No doubt Miss Rapp would do anything to have that extra time to spend with her son. But would she have written the same article then? I very much doubt it. She would have found herself in that horrible in between that the parents of children with chronic illness find themselves, struggling to balance the needs of today with the hope for tomorrow.

There is a new drug hotly anticipated in the treatment of Cystic Fibrosis that has found itself in the news of late. Children who once died in grade school may live to attend college. The decisions their parents make about bedtime or schoolwork or being grounded for using a swear word will have a very real impact on the kind of adults they grow up to be. But not all of them will grow up. Even with the incredible advances in treatments, the gene therapy research that gives hope that someday there may be a cure, children still die from CF. Entire families are devastated by the loss of multiple siblings. The fact that a disease is treatable is still not a guarantee.

Is this worse? Is it better? Does the extra time you have to spend with your child outweigh the pain of knowing that they will die with more self awareness, more fear? I cannot pretend to know the answer. I cannot pretend even that there is an answer, a single yes or no that applies equally across the board to those brave families who face CF or cancer or congenital heart disease so resolutely and with so much grace. It is a question, nevertheless, that is worth asking. Simply by looking, who knows what we will find?

Freebie

Supporters of breast feeding are generally applauding the trend that fewer hospitals are giving away free samples of formula to new moms. I certainly see the argument. Even if the hospital hires lactation consultants and gives lip service to the benefits of nursing for both mother and child, the act of handing over the formula (which hospitals usually receive free from formula manufacturers) is seen as complicit support of formula as the diet of choice for newborns.

When the resurgence of breast feeding amongst women in the U.S. meant that formula sales fell instead of continuing to rise as expected, Nestle sent Caucasian employees dressed in white coats to places like Africa to give free samples away. These were not doctors, but they were dressed like doctors. The result was that women who had fed their families successfully for generations were led to believe that formular is better than breast milk. Unfortunately, while an adequate source of nutrition and certainly not overtly dangerous to the infants whose mother's cannot or chose not to nurse them, in communities with no clean water supply and where financial limitations mean that formula is likely to be mixed at half-strength to save money, formula is in fact dangerous. Dirty water and the diarrhea it brings with it kill infants, infants who would never have fallen ill had they been nursed.

In the United States the stakes are not quite so high, the situation not so dire. Still, the protective effects of breast milk have very real financial impact on the health care system and on families as a whole. Fewer childhood illnesses translates to fewer missed days of work for parents and fewer doctors visits.

So I do support breast feeding and not only because the AAP tells me to. But I also support having a few bottles of formula in the back of a cupboard somewhere and, since no gung ho new nursing mom wants to have to walk into a store and actually admit that she is going to buy formula, then by all means let the hospitals give it to them for free.

Emmaline got no formula in the hospital when she was born. We had no formula in the house when we went home. She had no formula for the week that I sobbed each and every time she nursed because we were not latching right. And that meant we had no formula within easy arm's reach when I spiked a fever of one-hundred-and-two from the mastitits I had developed and that I, despite feeling as if I had been hit by a truck, continued to be her only source of food.

We nursed for another year. We were by no means breast feeding failures. And I don't know for sure that if I had guilt-free formula stashed away somewhere that I would have actually used it. But even if I didn't, just knowing it was there would have made nursing Em a choice and maybe I wouldn't have felt so scared or helpless. Maybe I would have taken a break and been able to heal before the bacteria took hold beneath my skin and I ended up back in the hospital and on IV antibiotics for 4 days. Maybe we would have been healthier, the two of us, with a little formula on the side, our dirty little secret.

Em, of course, didn't care. She nursed like a champ even when she was biting holes in me to do it. She gained weight. We eventually got the hang of it and I wouldn't trade the closeness of those moments for anything in the world. But when a new mother looks at me on the day she is about to go home from the hospital and tells me that she doesn't know if she can make it on breast milk alone, I tell her I understand.

I make a hard sell for exclusive breast feeding, of course, but then I tell her that if she takes some formula home and hides it somewhere at least she won't have to worry. If there is a night she is throwing up and can't get out of bed, then she can take care of herself while her partner takes care of the baby. Because nursing, health benefits or not, is not worth it if it detracts from instead of adding to the joy of having a child. Nursing is hard work. But, like baseball, it's the hard that makes it great.

The Penis Pronunciation

Now that Emmaline is two, it is a whole new world. She learns something new every day. For instance, how to make breakfast.

Or how to take care of the livestock...

To ride in a rodeo...

To prepare for the catwalk...

To turn brand new blue shoes to black in less than sixty seconds...

Or even how to seek out new worlds and new civilizations.

But perhaps the most impressive strides she's made lately is in her ability to communicate. Sure, this often takes the form of earth shattering shrieks and a deluge of tears. But more often than not there's a sentence thrown in there somewhere.

"Stop Mama, no kissing me," was not a sentence I particularly wanted to hear today, but it was a sentence nonetheless.

And though she says much that we don't understand and says even more that you wouldn't understand, when she chooses a word, it is usually correct. Once she pins down the syllables, she rocks them like a beat poet and expects her audience to appreciate her efforts.

So it was unexpected when, after introducing peanut butter for the first time, she got it so entirely wrong when asking for seconds. The peanut butter lollipop was a favorite of mine when I was younger, probably because it was within the reach of my culinary skills consisting as it does of peanut butter loaded onto a spoon. Emma had some. She liked it. She did not demonstrate any feared allergic reaction but instead smiled and asked me for more.

"Like more penis pop, please."

"You want more peanut butter lollipop?" I asked innocently.

"Yes please, I love penis lollipop."

She said lollipop. She also says helicopter and refrigerator and lullaby and thunderstorm without difficulty. But she cannot say peanut butter.

I didn't laugh. I didn't draw attention, though this was one of the hardest things I have ever had to do. I simply repeated the words peanut butter to her as often as possible in the days that followed, waiting patiently for Emmaline to get it right. Granted, I've been waiting less than a week, but we're not making progress.

This afternoon, while lying underneath the kitchen table to let Scout lick the remains of her snack off of her face, Emmaline exclaimed, "Mmmmm, I love penis crackers!" Then she said, "Crazy dog, stop licking me."

At least she's getting some things right. In the meantime, I'm waiting for the knock on the door from social services. And I have a feeling I'll be talking about peanut butter a lot.

Spongiform Encephalopathy

It seems the big news this week is that Sponge Bob turns young brains to mush. I tried to ignore it when I first spotted this article. After all, there wasn't much about that statement that struck me as surprising. Sure, researchers have long been asking questions about how much television is good, bad, or has no impact at all. When Sesame Street debuted in 1969 with the goal of helping young children learn, studies were designed to look at test scores of children who would have been exposed to the programming compared with children who were not.

What do the studies tell us? Well, while there are certainly fascinating tidbits to be found here and there and that will amuse developmental specialists for decades to come, I would venture to say that the bulk of the literature echoes what common sense should have clued us into from the very start. Certain television, aimed at keeping your children entranced and slack jawed on the couch, is probably not boosting their IQs. Other shows, ones that reinforce simple concepts and encourage audience participation, are probably not so bad. You might want to turn them on, for example, when you hop into the shower or fold the laundry. No harm, no foul.

Should you park your child in front of the television all day? Should you depend on television to teach your child to count or to be kind to strangers or spell his or her name? Of course not. Do we sometimes turn on television that we know is not necessarily educational because we just need a break? Yes, and that's absolutely okay.

At the park this last weekend Emmaline saw a horse she has seen many times since we moved to our new neighborhood. Usually she yells, "Horsie!" Or she squeals what is meant to sound like a neigh. This time, however, she said "Yee haw!" because that is what Jessie from Toy Story shouts. It's a movie that she doesn't really understand and, yes, she does get slack jawed sitting in front of it.

But here's where I think it differs from Sponge Bob, if we've reached the part of this post where I defend my parenting choices. I enjoy it as much as she does. That means that as much as the movie is entertainment and not education, it is something we share, that we discuss even when the television is off. The stories we love can define us just as much as how quickly we learn to read or write. In fact, I think that one inspires the other.

In healthy moderation, as with all things. But then, I didn't need a study to tell me that. It's something my mother taught me a long time ago.

Bite Me Michelle Bachmann

It's been made clear to me during my years of training and practice that pediatricians are meant to be happy, comforting people who love to cuddle babies and who want to fix boo boos and all sorts of other adorable things. So fine, I wear socks that have sheep and teddy bears on them because, let's be honest, they are what I would choose to wear anyway. And I try to be a nice person. I try to smile at work and even just out on the street. I try to pick up trash when I find some. I open doors for people. I give up my seat on the T to older people or women who are burstingly pregnant.

I try to be a good person. I try to behave.

But then Michelle Bachmann went on national television and said that the vaccine for HPV, a vaccine that prevents cervical CANCER, causes mental retardation.

The words that I have in response to this heinously irresponsible statement are not words I'm allowed to say in front of my daughter. In fact, those words, those dirtiest of insults that I have at my disposal, are not dirty enough for the venom I feel.

To be in the public spotlight, as Bachmann and other politicians are, brings with it a certain responsibility. It is a responsibility that should be akin to the one that I accepted when I became a doctor. You should promise to be nice. You should promise to do what is best for people and not what you think will be politically advantageous. You should promise to make sure that the things you say, things people will rely on to make important life decisions, are actually true.

Bachmann has failed in this before and she failed again and again this week as she continued to spout completely false allegations. So just to be clear. Women DIE from cervical cancer. There is now a vaccine to PREVENT more women from DYING. And to say that the vaccine is dangerous before a national audience because "a woman...said her daughter...suffered mental retardatio as a result" (of the vaccine) without ever looking into the credibility of such a claim is atrocious.

What sort of executive leader would this woman be if someone told her that Canada was evil and was planning to invade Buffalo and so she ordered a military offensive based only on hearsay? Have I gone to far? No, I don't think so. But she has.

What can I do about it? Not much. But I did just write a check to Planned Parenthood. I guess that's a start.

The Pregnant Pause

I was barely pregnant with Emmaline when a colleague asked me to evaluate a patient he believed needed to be transferred to the ICU where I was working. Chatting with the family about how moving their child to another floor would allow her to have a nurse and team of doctors watch her more closely, I did not think to move out of the room when the portable x-ray machine rolled in. The friend who had called me in motioned me violently into the hall.

"Don't you want to step out?" he asked. Then, after a pause, "Congratulations."

News, it seems, spreads quickly in a hospital where pregnancies (even in those first delicate weeks when miscarriage is entirely possible) must be protected against radiation, certain chemotherapeutic or radiation therapies, and the variety of other hazards our young patients carry. Also, and this quickly became apparent to everyone I worked with, it was impossible not to throw up after being awake for more than twenty-four hours straight.

Being a resident and being pregnant are both enormously draining and doing both at the same time was exhausting. Generally, however, I found comfort in the fact that nearly every other married female in my program became pregnant within months of each other and approximately 9 months before we were scheduled to finish our training. So as awful as it seemed during certain overnight shifts, we were in it together and the end was in sight.

This time, planning a pregnancy was somewhat less complicated. Yes, Emmaline would have a serious transition to endure from she-who-is-adored-by-all-and-receives-undivided-attention into Big Sister and one-who-must-learn-to-share. Yes, my husband has just (at the request of his employers, who are footing the bill) just started attending law school in addition to real work. Yes, I still work with snotty nosed children who carry horrible viruses like CMV and (soon at least) influenza and pose a real risk to the future child it is my job to protect.

Yes, I am still a little bit crazy and, yes, I use a lot of hand sanitizer.

But I was also feeling a lot more level headed about the whole enterprise. Did we get pregnant the first month we tried? No. Did I freak out? Okay, maybe a little. But I got over it. And then we did get pregnant and I thought to myself, I can handle this maturely, coyly even. I can play it cool and not make a big deal out of it until people start to ask me why I'm so fat.

That was the plan.

Then I had to do a sedation for a nine-year-old with a broken arm that needed reduction and it was just me and the orthopedist and the nurse and the kid in a room with the fluoroscopy machine and no lead drapes in sight.

"I guess you should leave if you are prengnat," the orthopod joked to us before shooting the film.

The kid did not move, since he was sedated. The nurse chuckled wistfully. I froze for one single moment and then I ran.

In the end it worked out for the best since I am not actually coy or cool or even mature. And having an ER full of nurses know there is a potential baby in your belly and an ultrasound idling in the hall means a whole lot of extra chances to take a look and say hello.

The Terrible Twos

As Emmaline's second birthday approached she continued to be a wonderful child. Yes, there were several screaming fits triggered by no discernible cause, but she also demonstrated extraordinary caring and love both in her actions and with her ever growing vocabulary. For the most part that love was directed at cats, or the dog, or her stuffed animals (who enjoyed frequent tea parties and gifts of band aids for their various boo boos), but she also, on occasion, would spontaneously utter the phrase, "Mama, I love you." How terrible could the twos be if they came wrapped in sentiment like that?

The thing was, we reasoned unreasonably, Em has developed some fairly impressive communication skills. Upon being presented with yogurt for breakfast accompanied by something as insulting and bourgeois as a plastic infant spoon, she made her objection and its cause abundantly clear. "No, Mama, proper spoon."

Fine. Stainless steel flatware for the little lady. And here's hoping she never realizes there's a drawer with actual silver.

So maybe the terrible twos wouldn't be so very terrible. She can indicate needs and wants, which the experts all say is where many of the frustrations of this age stem. She plays well with others.

She shares things like her wagon and toys and her rocking chairs without reservation.

Her block stacking skills continue to become more refined, which is sure to continue to be a party favorite through high school and maybe even into college.

And she has learned that it's important to travel in style, even just to the doctor's office to get your flu shot.

Could it be possible that we would reap the benefits of all these milestones without suffering the deafening screams of the tantrum that must be had for the tantrum's sake if for no other reason? That Emmaline would learn to choke back her tears for long enough to explain, "Band aid fell down the backpack," allowing us to rescue said soiled bandage from the pocket into which it had slipped off her finger and disappeared, thus averting disaster?

Yes. But only sometimes.

For though she continues to impress with her solo performances of Baa Baa Black Sheep and her recitations of Humpty Dumpty, she also CANNOT BE REASONED WITH when it comes time to bid the playground farewell.

Alas.

We had been doing so well.

Letting Go Gently

I thought a lot about death during my years as a resident. And I've thought a lot about death in the years since. It's impossible not to when you work in a hospital, when you watch children suffer, because even though most of them won't die, you know that some of them will.

Thanks so much to the Boston Globe Magazine for publishing this piece in today's edition. And thanks to all who will read and discuss this difficult topic.

Dumpy Dumpy Sat on a Wall

There are a few givens when you go on vacation with a toddler. The first, it seems, is that she will end up buried in the ball pit at Story Land with only the round circle of her sad little face above the surface. At this point, as the twelve year old manning the activity ineffectually tried to help her out, I found myself reduced to uncontrollable laughter, identifying me immediately to all of the other families in the park as the worst parent in the world. Then, she inevitably spent several days as a snot dripping monster, probably as a result of her near drowning event in said ball pit.

Or from any of the other virus laden surfaces she touched or hugged or kissed.

For Emmaline, who learned many nursery rhymes as well as compassion for "Dumpy Dumpy's" fall induced boo boos, it was an educational trip. For her parents as well, who learned to avoid any rides bearing this signage:

Outside the walls of the theme park, the most important lesson was that even though toddlers should not be dangled over waterfalls, they will insist upon it.

And if, at the end of the week, said toddler lets you dress her up like a Victorian doll, then the whole fete should probably be considered a success.

No Guinea for Ghana

Congratulations to Ghana and the CDC, WHO, UNICEF, and Carter Center on the success of their efforts to eradicate Guinea Worm!!

What's Guinea Worm, you ask? Here's the CDC's diagram of the worm's life cycle:

Informative, but hardly explanatory of just how painful infections are, how completely they can destroy a community's ability to function since walking is often impossible when the worms are crawling out of your foot and most people in the developing world don't exactly have desk jobs. There's a certain grossness factor as well, one we Americans generally get to avoid thinking about.

But let's take a deep breath and try. Clean water, check. Freezer stocked with Breyers ice cream, check. A single moment of appreciation for how good we have it, bad economy or not? Yes.

I think that's the least we can do. And if you'd like to do more, Guinea Worm is still endemic in Southern Sudan. Read more here and consider fishing your spare change out of the sofa and sending it their way. A world without wormy feet would make a world of difference.

The Pox

When I was an intern, a family from Ireland who had given birth prematurely and were readying themselves to go home with their now fat and happy new baby, asked why we give the Hepatitis B shot at birth. It's a good question, since if a mother is not infected with the virus there is no harm in waiting to vaccinate the infant during the routine 2 month shots. But some women will catch Hepatitis B during pregnancy and after their screening labs were done. For these infants, the chance of chronic liver disease from the infection is 90%, which brings with it the danger of liver cancer and death, a horrible future for an infant who could have been entirely healthy. So the default in the U.S is to immunize.

In Ireland, they wait until 2 months of age for the first Hepatitis B vaccine, but at birth infants receive immunization against tuberculosis in the form of the BCG vaccine. This vaccine isn't used at all in the U.S., since the rates of tuberculosis are currently so low that the monetary costs of universal vaccination are not thought to be worth while.

There are several other differences as well. Infants in Ireland are routinely immunized (or immunised) against bacterial meningitis during infancy, a measure currently being debated here in the U.S. Hopefully we will follow suit since, having seen pus drain directly from a spinal needle placed in an infant's back, I can tell you that bacterial meningitis is absolutely not something you want your brand new babe to get.

But what about chickenpox? We vaccinate here against varicella but they don't necessarily do so in Ireland. Years ago my husband found himself embroiled in an online debate on the benefits of vaccines. Routine vaccination against chickenpox was only just beginning and there was, of course, objection to the addition of one more jab to the early childhood immunization schedule. Those opposed to vaccination protested that only about a hundred people die from chickenpox every year of the 4 million who contract the disease in the U.S.

My husband was agast. Surely, he protested, if two school buses filled with children were driven off the edge of a ravine and one hundred young and healthy kids losts their lives needlessly, you would think this was a tragedy. How is it different if they instead die horribly painful deaths in the hospital after their organs shut down from infection? And isn't it, in fact, worse to have a tool that could have saved them and decide not to use it?

But we are using it. Children are getting the vaccine and, as a result, the number of chickenpox cases ws down to 400,000 in 2005. More importantly, deaths in children and adolescents from chickenpox are down 97% here in the U.S. Canada and Australia have begun to adopt the vaccine. Perhaps soon Ireland will follow.

In the meantime, for those parents trying to avoid vaccination and considering the "chickenpox party" as a way to get your kids exposed early, good luck. I'll keep my fingers crossed that none of the kids at your party end up driving into the ravine.

Annie Get Your Gun

When the ER is quiet I don't feel guilty for not being more productive. I get to be relieved that children are not sick and are not getting hurt. If it is busy, if a particularly noxious virus seems to be making its way through the ranks of the young, I still try to take the time to encourage good hand washing. Breaking the cycle of infection is essential to keeping others in the household and a child's group of friends healthy and well.

So what if my patient has instead come to be seen for a head injury after a car accident in which he was not wearing a seat belt, a broken arm after a fall from a trampoline, a bad laceration after being allowed to play unsupervised with a knife? It would be remiss of me to not address appropriate safety measures, but it is also (by this time) almost beside the point. The accident has happened and the pain that it caused is a better warning than any I could ever give to be careful next time around.

Other pediatricians, those who work in offices and see patients before they have accidents, have a better chance of preventing such injuries before they occur. Keep in mind that the most likely thing to kill a child over the age of 1 is an accident. Is a pediatrician really doing his or her job by doling out shots and prescriptions for antibiotics but ignoring this fact?

No.

So regular well child visits at the pediatrician's office routinely involve discussion of age appropriate dangers. Mothers and fathers of infants are encouraged to be vigilant about not leaving children unattended on beds or changing tables, since falls in this age group can result in a skull fracture. When children get older, discussion turns to child proofing electrical outlets, use of bike helmets, rules about crossing the street. In 49 of 50 states discussions also include inquiries about whether anyone in the household owns a gun.

If a family answers in the affirmative then the pediatrician takes the time to cover the importance of gun locks, storing firearms and ammunition in separate places, and keeping guns locked up and in a place where children can not get them.

But in Florida, asking about exposure to guns is illegal. Under the auspices of protecting the privacy of households, pediatricians could now face jail time for this line of questioning. Theoretically the discussion of gun safety could still go forward in the hypothetical, but it's not likely to.

Pediatricians are already under extreme time pressures to discuss all of the necessary facets of development, injury and disease prevention, school readiness, and countless other topics of a typical well child visit within the time allotted by insurance companies. In Florida, not being able to ask which children are at risk of gun death will mean that counseling on safety is simply not done.

Had the parents of Seth Lasater not kept a loaded rifle in their home, the eleven year old would still be alive. Instead he died earlier this month. Would a frank discussion with his pediatrician have saved his life? Maybe, maybe not. We'll never know. But we'll unfortunately find out how many more children become statistics as the effects of this idiotic law play out over time.

Deep Impact

Since I've taken care of more than one child who has been creamed by a car recently, let me take this opportunity to remind all of you drivers out there that the brake is the one on the left.

Yes, children do stupid things. Ideally they would do those stupid things in places cars were not. But as the mother of a twenty-two month old who thinks parking lots are the ideal place to stage tantrums, I can sympathize that there are times when (despite everything we do to protect them) our children may do things that are out of our control. When that happens, we can only hope that we are not the only ones looking out for them.

A Little Child Will Lead Them

Earlier this week the cat attacked Emmaline. At the risk of sprouting warts on my chin and talons in place of my not-so-manicured nails, I'm glad she got hurt. The two shallow scrapes on her arm were a lesson that was long overdue.

Let me qualify this by saying that Crake did not object when she chased him in circles around her bedroom. He did not hiss or spit when she tried to pick him up like a stuffed animal. He did not raise his hackles at her attempts to use him in place of a pillow. But when he was done with all this and had retreated for quiet under her crib, she crawled in after him and he thwamped her a good one.

I saw it happen and she totally deserved it.

The truth is we have been lucky with the patience of our feline family members. Even Scout, despite her inability to refrain from chewing every baby toy in sight, has been willing to put up with quite a lot.

The result, unfortunately, is that Emmaline has failed to learn what all children must.

"Crake bite you!" she proclaimed with no small amount of surprise, brandishing her arm to prove she had been hurt.

"Crake scratched you," I agreed, hugging her for the approximately thirty seconds it took for her tears to stop. Then, "Why did he scratch you?"

Emmaline whimpered and took a deep breath, "No chasing cat!"

Then she brightened.

"Band-aid?" Em suggested.

The trauma, it seemed was over but the lesson itself was learned. The following night Scout made an ominous rumble when Emma threatened to interrupt the meal she was making of some rawhide. Emmaline immediately looked up questioningly.

"Scout bite you?"

"She could bite you," I warned. "Step back. She wants to be left alone."

Emmaline did. This alone was groundbreaking since she usually has quite a different approach.

Rubber Necking

Yesterday I read this article at Salon.com about a girl who was mistakenly given one vaccine in place of another. It was hard to pass up. With the subtitle "it changed her life in an instant" it promised the sort of tragedy we all have trouble resisting. But while medical errors are serious matters and the steps hospitals and doctor's offices take to minimize them are important, the story that followed that headline was unfortunately more about a mother's overreaction and her daughter's subsequent terror than it was about the system of checks and balances in medicine that we use to keep our patients safe.

While the mistake was unfortunate, it is one most people would hopefully see as easily forgivable. No one was hurt. The girl received a vaccine she should have gotten anyway. No harm, no foul. The doctor apologized. The world should keep turning and no one should shed tears.

My reaction to the article was so filled with frustration that I almost missed the small kernel of excellent advice the author had buried beneath the sodden handkerchiefs and smelling salts. After coming to terms with the mistaken administration of the HPV vaccine (an immunization that protects against cervical cancer and should absolutely be given to every child in the country, sans drama), the author writes: "Meanwhile, she still needs to get that meningitis shot, and I'm going to make damn sure that's the shot she gets."


This is the most important sentence in the entire piece. The system of checks and balances we rely on to prevent medical errors does not only include doctors and nurses and pharmacists. It includes patients. It includes families. It includes parents. When the author speaks up in her daughter's doctor's office to double check the vaccines she is getting, she will not be doing someone else's job for them. She will be doing her own job.


Years ago, a friend had surgery on her knee. Having heard tales of surgeons operating on the left instead of the right and vice versa, she prepared by taking a marker and writing NO! in big letters on her good joint. This has now become standard practice. The surgeon marks the site intended for repair with purple marker while the patient is still awake. Memory is faulty. Sometimes even medical records can be incorrect. The surgeon performs this last review with the most important member of the checks and balances system, the patient. 


The era of paternalistic medicine has passed. But with it comes a new responsibility. Patients and their families have opportunities to be involved in health care decisions in ways that were previously not entertained. But to do this effectively, we must be informed about our health, the vaccines we receive, and the medications we are being given. We should promote safety in our medical system and, when mistakes are made, look at the underlying causes and address them. Anything else is just a distraction from the real issue at hand and a waste of Kleenex.

An Aside

My husband once said that he did not support lying to children - specifically our own then theoretical children - about the existence of Santa Claus and his elves, preferring instead the colder, harsher reality of a world without magic but full of hard truth. And yet he just faked a phone call from the cat to convince Emmaline that her presence was needed upstairs for petting and, by extension, for bed. When that was somewhat less effective, he gave her money to "feed the pig". We are batting a thousand here.

My Liberal Agenda

Last week the Institute of Medicine made recommendations that eight preventive services be provided to women at no cost. Included on the list was birth control counseling and prescription. If these policies are adopted, it would mean no co-pays at the pharmacy for monthly refills of the pill. It would mean that women who previously had to forego such medications because of cost would now be free to join the 15.3 million Americans already utilizing hormonal birth control to prevent unintended pregnancies.

This should be welcome news, since three-quarters of Americans support government funded birth control. According to Fox News host Greg Gutfeld, however, the recommendations were akin to a left wing conspiracy aimed at "eradicating the poor." His reasoning, if that word can be applied here, is presumably that if poor women are those most likely to benefit from free birth control, fewer children will be born in poor households. This would subsequently result in a drop in the total number of poor people in the country and this (help me understand this here) is a bad thing?

So I find myself in a bizarre form of agreement with Greg Gutfelt. I am liberal. And I do want to eradicate the poor.

We have, in this country, more than enough to go around. Paris Hilton certainly has more than she needs. And while I certainly don't want to call for socialist reform that would take away her drive to bring us such valuable series as The Simple Life and The World According to Paris, both of which I am certain are lowering IQs wherever they are shown, I do think that an ultimate goal of having fewer people instead of more people living below the poverty line is both achievable and GOOD.

If women struggling to make ends meet use the pill to delay childbearing and finish school or to space their pregnancies to avoid having more than one baby in diapers at a time, they will be doing no different than the 15 million American women already lucky enough to be exercise this choice. If having a baby at 22 instead of 18 makes the difference in obtaining a high school diploma instead of dropping out, then she is likely to earn (on average) nearly $7,000 more annually than if she stopped school just short of graduation. If she manages to get through college, her salary would likely jump by 76%.

Money isn't everything, unless you don't have it. Greg Gutfeld is neither a woman, nor is he poor, and he does not know what he is talking about.

Sacred Spaces

Driving home from the city a little bit after midnight last night, the moon was low in the sky and looked almost as if you could reach out and touch it. Had Emmaline been with me she would have asked to do just that, as the moon is a great favorite of hers. But her big city adventure had been taken with her father while I worked in the ER across town.

So I was alone as I drove and had the music turned up to help keep me awake. The only CD in the car was my old copy of the Indigo Girls Nomads Indians Saints, rescued from a box after the epic summer move of 2010. When I listened to it then, a decade had probably gone by since I last heard any of the songs, but I still knew each and every word.

It happens that way with things that you love when you are young. For me, the Indigo Girls are synonymous with a summer camp named Bement, a girl named Meg Williams with whom I am sadly no longer in touch, the smell of mildew emanating from old bunk bed mattresses, snickerdoodles, Bar, Alphabet Soup Night, and so many friends I am still lucky to have.

As a child my family did not move around much, but we did move around some. The house I came home to from the hospital was not the one I went to school from on my first day in Miss Foisy's kindergarten class. Ditto middle school and high school and college, different driveways, different yards. This is not to say I was uprooted. I always felt very safe and very at home. But home meant family and not necessarily the house we were living in. Home meant my stuffed lamb and bunny blanket (and yes, they came to college with me) and not the banister on the staircase you peeked through on Christmas mornings since the banister, over the years, had changed.

Camp was the only place I had that was a constant, the only physical location I continued to feel a connection to over such a wide span of years. One winter I had walked on the pond and found two dollar bills frozen to the surface. It was the first money that was my own. Other summers I fell in love or fell out of love or became a vegetarian to be more like the girl someone else seemed to love and I sailed and I swam and I sat for hours on boat duty and got splashed by campers in canoes and every once in a while I felt, for just one minute, almost like someone who was special just by being me.

When I needed a babysitter for Emmaline and I had no idea how I could let a stranger take care of my brand new baby girl, I posted an add on SitterCity and within an hour ended up hearing from a girl who had been my camper fifteen years before. And somehow it didn't seem extraordinary, it felt inevitable. Because camp is family and family is forever.

Except that camp is not forever. It stands empty and is on the market for anyone looking to build McMansions on the pond where I learned to swim, along the shores I lost my cat Kristopher in a woodpile and found him miraculously alive weeks later, on the spot where we gathered each morning to sing B-Bement Camp and so many others.

They will pave over the White Cross Trail and raze the trees along Mill Stream and the people who buy houses there will put their patio furniture on the Lakeside Sports Field and never know what a toot is or a clanger or a Dessert-O-Meter or how the sign from Bucksteep Manor came to be in the Rec Hall.

They will never know what a special place they are living in. But I hope they will be happy there. I was.

The places we love can be ruined in seconds. But that does not mean we stop loving them. Maybe it means that we love them even more.

Hotter Than Helios

I was planning on a very timely, very well researched post on the dangers of heat exposure. Unfortunately, in light of the 109 degrees the thermometer was reading outside and the absence of air conditioning in my lovely old fixer upper, I went to the movies instead. It was my first movie in an acutal theater since August Rush came out a million years ago, so I was pretty excited for the cinematic experience itself in addition to the climate control.

As an aside, this Harry Potter is totally not appropriate for small children, but I enjoyed it.

So it's hot outside, and not just here as the weathermen and my friends on Facebook tell me. Heat related injuries in children range anywhere from heat rash or mild dehydration to the more severe heat stroke, which can be life threatening. Staying out of direct sunlight is certainly helpful, as is liberal application of sunscreen for those children who will find themselves exposed to the sun. Serious sunburns bring with them additional fluid losses through the skin, so if your child looks vaguely lobster-like please make sure they are drinking.

In fact, everyone should be drinking. They should be drinking lots, because often they won't feel much like eating. I would say this is not such a bad thing, since who wants to cook when it's this hot out? But if your child's appetite drops off a bit, be all the more vigilant about fluids.

What sort of fluids, you might ask? Why the messiest ones around are usually the best since, let's be honest, anyone who has not gone through puberty is probably running around naked right now and everyone else (myself included) is probably in a swimsuit and can be hosed down.

So embrace the sweets, at least until the weather cools. Then schedule an appointment with your dentist to apologize and brush and floss diligently to make up for your transgressions.

In the meantime, stay cool. In addition to the usual water activities, might I suggest the following as well:

1. Stand in front of the open freezer door until someone yells at you to shut it
2. Go to the nearest restaurant that offers free refills and stay there until they close
3. Visit Costco (or equivalent) and hide several lawn chairs in the garden shed display then snack on their food samples all day long
4. Make friends with someone who has air conditioning
5. Acutally physically BE someone who has air conditioning, call me, and I will certainly be friends with you

And for my husband, one very specific suggestion: STOP TELLING ME ABOUT HOW COLD YOUR OFFICE IS OR I AM GOING TO HAVE TO HURT YOU!

Less is Not Best

Yesterday I suggested that the medicalization of childbirth and the overwillingness of the medical profession to allow, or even promote, surgical deliveries might be a less than fabulous thing, not only in the States but worldwide. And then I happened to have a chance to listen to Radio Boston's account of the legislation now on Beacon Hill proposing state regulation of home births and nurse midwives.

Clearly these two stories cover opposite ends of the intervention spectrum and, as with all things, the right answer for most expectant moms probably lies somewhere in between - some medical supervision of their birth process but a hands off approach when things seem to be going well all on their own. But for those who want, sometimes desperately want, their birth to go a certain way, should it really be for the state to say what is allowed?

Yes. Sorry. And feel free to unleash your fury in my general direction.

The fact of the matter is that delivering a child is probably one of the most dangerous things women in the United States will ever do. Natural or not, the act of child bearing has been killing women for as long as women were women. Before that, childbirth probably killed females from the species Homo erectus, but you'd have to ask an anthropologist about that and despite the letters after my name I don't really fit that bill.

We live under the misguided impression in this country that pregnancies result in healthy, happy babies. We are lucky enough that this is for the most part true. But it is not luck and it certainly is not evolution that has brought us to this place. Just the opposite. Our enormous heads don't really help the situation much. So why are fewer women dying in childbirth than they did before? Medicine.

Has medicine overstepped the bounds on many different occasions? Yes. From the soaring rates of infection on maternity wards due to puerperal or Childbed fever in the absence of hand washing before Semmelweis instituted good hygeine practices in 1847 to the overabundance today of Cesarean births in the U.S. and abroad, there have been and continue to be missteps along the way.

But before you consider foregoing all that medicine has to offer, consider this. Group B Strep (GBS) is a bacteria that many women carry. Before the initiation of antibiotic prophylaxis for carriers, 7500 infants in the U.S. contracted GBS from exposure every year. Once an infant is sick, it has about a 50/50 chance of dying. Not in Africa. Not if you fail to bring your new son or daughter to the hospital. Even with treatment, these babies die, they hemorrhage into their brains and ooze blood from around their IVs. So fine. Hire a doula. Have a midwife attend your delivery, but get tested for GBS and if you're positive (as I was) get your freaking antibiotics.

And while we're on the subject, just a word about vitamin K. Yes, it gets injected into your baby's thigh and no, maybe that's not the kindest welcome into this world, but seriously, you think getting pushed out of a vagina didn't already ruin your baby's day? Without vitamin K supplementation, the incidence of stroke (again with the BLEEDING INTO THE BRAIN) is not 1 in a million. It's not 1 in 100,000. It is, in Vietnam anyway, 116 per 100,000 live births. Why are these numbers difficult to calculate in the U.S.? Because babies get vitamin K! So for these 116 infants (and keep in mind that more than 300,000 infants are born daily so that's 348 babies having strokes EVERY DAY), some die and about half suffer serious neurologic impairment.

Neonatal Stroke

If your baby didn't get vitamin K because you refused the injection and then he had a stroke and needed to be fed through a G-tube and never recognized you, would you still love him? I hope so. But I think you would find it hard to love yourself.

So pick out music and scented candles for your birth plan. Buy an enormous bouncy ball. Take control of your delivery. But then take a moment to think about what happens if your baby is in trouble and realize that it's not actually about you, is it? It's about getting your baby out safe. So have a back up plan that involves a hospital and an obstetrician. Do your research about these things, even if you want to try to avoid them, so that if your baby needs out now, at least you are not standing the in the way.

The difference for Emmaline was about a minute. She was fine and then she was not. And even though the one thing I wanted from my delivery was to NOT be cut open by a surgeon, when her heart rate was plummeting I was one hundred percent grateful to be going to the OR.

C is for CYA

As I was driving into the hospital the other day, I heard a story on Public Radio International about the sky rocketing rates of Cesarean sections in the developing world. Now on the surface this might seem like a good thing. Mightn't it be that women who would have otherwise died in childbirth and infants who might have suffered birth trauma without intervention, are instead surviving the complicated process of delivery unscathed?

Except this doesn't seem to be the case. Instead, women are choosing surgical rather than vaginal deliveries because of the convenience of being able to schedule their child's birth. This in turn means that other women, those who need emergent sections, do not always have access to the limited OR space their countries' doctors have at their disposal.

Doctors in the U.S. seem to be similarly guilty of failing to balk this trend, with rates of C-section quoted at 34% of pregnancies in 2009.

Now there is a saying amongst my OB friends that the likelihood of C-section rises proportionately to the length of the expectant mother's birth plan. The message here being that the more things you try to control, the less likely you are to be able to control anything. So I kept my own birth plan short when it came time to evict Emmaline from her warm and watery first home. I printed an article from NeuroReport that suggested that profanity increases ones ability to tolerate pain and I scribbled BIRTH PLAN across the top of the first page. I thought it might be funny, but it turns out I was too busy swearing to show it to anyone.

Ultimately, though, Emmaline's heart rate dropped to 40 and they whisked me away to the OR. She emerged, screaming and vigorous, while I was in a fuzzy haze of fentanyl.

"At least you didn't actually have to have her," was the take of the childless chain smoker in the condo next to ours, as if having your abdomen cut open and put back together again is not major surgery.

But it is. It is surgery. You wouldn't have your kidney taken out or a biopsy done of your liver if you didn't really need it, would you? So why have a C-section if you are lucky enough to be able to deliver the way Darwin intended, with lots of pushing and a few F bombs thrown in for good measure?

"Whenever you have to take her, take her," I said to my OB, granting her permission to act on the dwindling heart rate we were both following on the fetal monitor. But I know that what she heard could very well have been "get her out safely or I will sue." That's the world we live in. But maybe it shouldn't be. Maybe we should all think a little longer about going under the scalpel.

And when it comes time to give Em a brother or sister, here's hoping I manage to remember that myself.

I is for Impatient

Fashion Faux Pas

I never expected my friend Brian to find himself at the center of a media storm regarding his fashion sense. Now don't get me wrong, the fine Dr. Skotko has always been a snappy dresser. He somehow manages to make even scrubs look one step above the pajamas they actually are. Unlike most people in our generation, he brings to mind spats and walking sticks. He inspires the word dapper. But he also, and this is one of his more important qualities, is one of the kindest and sincerely sympathetic physicians I happen to know.

He is quick to smile, the first to welcome a stranger, and (when I was expecting Emmaline and still taking overnight call) was always willing to ask the cafeteria staff for a plateful of pickles for the crazy pregnant lady upstairs. In the five years we've known each other, I don't think I've ever seen Brian get angry. I honestly didn't think it was an emotion he could possess. But then GQ's John B Thompson suggested that the reason Boston topped their list of the worst-dressed cities in America was that “Boston suffers from a kind of Style Down Syndrome, where a little extra ends up ruining everything.”

Even if Brian's sister Kristin had not been born with the extra 21st chromosome that results in Down Syndrome, I think he still would have been miffed at the language. Like I said, he's just a really nice guy.

Brian's eloquent response to the GQ post can be found here.

But I don't think you have serve on the Board of Directors for the Massachusetts Down Syndrome Congress and the National Down Syndrome Society to recognize when language is simply in bad taste. You don't have to have written books on the subject to realize that marginalizing a segment of any population is potentially hurtful and that hurting others is, generally speaking, a not nice thing to do.

So well done Brian on raising your hackles. I didn't know that you had any. I have to say I was pleasantly surprised, but then you have always been the sort to put others to shame, especially when shame is what they deserve.

Tinkle Tinkle My Little Star

I've been preparing to write a post about potty training, but we haven't been making much progress in that direction.

I had planned to do the whole run around naked outside until she finds herself magically compelled to pee pee in the potty, but after an hour she found herself standing in a puddle with no awareness of what had just happened.

"Did you pee?" I asked, to draw attention to the amber liquid at her feet.

Em looked at me and then at the ground and then at me again.

"Oh," she said innocently. "Sorry."

So I put a diaper on again. And while I still recognize that it's important not to rush it...well, I'd appreciate a sign of any sort that hope is on the way.

The God Complex

Tony Youn, plastic surgeon and author of In Stitches - a memoir about his experiences with the good, the bad, and the ugly - was recently asked to write an article for CNN.com about being a new doctor in July. He did. And in recalling the distant details of his harrowing initiation into the field of medicine, he was honest enough to choose a story in which he is not a hero. On the contrary, he described being placed in a situation he is unprepared for, one in which the patient survives his attempts to do the right thing primarily because the nursing staff is there to literally guide his hands.

As with all things medical, the responses to the amusing and self effacing tale are at times harsh. What interviewers and editors want is for doctors to open up about the uncertainty that exists in the practice of medicine, the nuances of which are unfortunately difficult to capture in 750 words or less. What readers (and consumers of medicine, for lack of a better term) seem to want, on the other hand, are doctors who are well trained, yet humble. To deny the possibility of fault is to develop a God Complex, yet to admit fault - to admit that the practice of medicine is messy and fraught with potential missteps and that the only thing that keeps the system running successfully is the teamwork between all of the different people who work in a hospital - is somehow to inspire condescension.

So let’s just be clear about a few points.

Not all new doctors are scared, but they should be. The ones who are scared, who can recognize when they need help and ask for it, those are the doctors you want working in your hospital when you get sick.

No doctor knows everything. Yes, there was a time when physicians used blood letting and leaches to treat fevers, when the sum total of medical knowledge was finite and flawed and, yes, maybe then it was possible for doctors to know as much about medicine as existed in books. Today it is simply not so. I would, however (and this is a radical statement), venture to say that the general increase in medical knowledge beyond what can be stored in a single brain is by and large a very good thing for patients. Embrace it. The doctor who looks things up is the one that you want.

New doctors, as riddled as they are with faults, are like puppies. They are highly trainable and they respond well to treats. If you find yourself in the hospital in July (heaven forbid) take comfort in the fact that the new intern who treats you will remember you forever. If your intern takes the time to explain something to you, or admits they have to ask their supervisor the answer to one of your questions, or even just asks you if you have any questions and stays in the room long enough to find out your response, reward them. Tell them you appreciate it and you will be training a doctor to be not only a better physician but a better human being for a long career to come. And if they don’t do these things? Don’t be shy. Tell him or her what sort of care you expect. The comment will fester and hopefully make a difference down the line.

Do I have a story, like Dr. Youn’s, of bursting into a room as a terrified intern and running a code? I do not. I’m a pediatrician. I had to ask approval of Julie, my first patient’s nurse, for permission to touch him for my entire first month. Every code I attended was standing room only, with ICU fellows and critical care attendings running the show. Children are precious. No hospital is about to let an intern slap paddles onto a coding infant’s chest. Nor should they. But the flip side of this coin is that it takes far longer in pediatrics than in other branches of medicine to gain the confidence that I’m sure Dr. Youn had attained only a few months into his training. Doing is learning. It takes patience and humility and there is nothing particularly God-like about that.

The July Effect

Many people, even those without a clear connection to the practice of medicine, are aware of the so-called July Effect, the worrisome time of year when new interns and residents swarm into hospitals and medical errors surge. Knowing that the transition from student to doctor is wrought with potential dangers, my residency program staggered the start of the intern year so that we incoming inept and fresh faced newcomers were paired with more experienced supervising residents. The result was that our “July Effect” probably actually happened in June and the honeymoon my husband and I had been planning for months was sadly and cruelly cut short.

As I have been enjoying the summer, though, I have begun to muse on another sort of July Effect, one that I will blessedly never have to suffer through again. While sitting at the beach with my daughter, I have had time to remember just how frightening, soul crushing, and depressing that transition into residency can be. The eighty hour work weeks, the phone calls from family and friends that go unreturned for months at a time, the layering on of guilt at all of the the things you are missing in order to do a job that you realize you are not doing very well, this is a July Effect of an entirely different kind.

On many occasions I have been asked by medical students and resident for words of wisdom on how to survive with hope or at least a modicum of dignity. It seems writing a book on the subject of how much residency can suck sometimes means I should have this all figured out. But truly there is nothing I can say that will make it easier except to remind these younger versions of myself that it is a finite period of time and it ultimately comes to an end.

At the beach yesterday with two friends from my residency class and their offspring, I was amazed by how long ago those sleepless nights at the hospital feel and how this new life we are living, as mothers and working parents, seems to be the only reality I know. Perhaps that’s because there have been so many sleepless nights since, only these were spent at home with Emmaline in the months before she was transformed into the sleep trained wunderkind she is today. Or perhaps it’s just another way of saying that residency, while an important job and one that we committed our lives to for those years, was still just a job. Life, our real lives, are what we are living now.

And it comes complete with sandcastles and sunscreen.

Concrete Advice

New parents tend to be anxious. Sometimes it hurts to watch. In the same way it must hurt to send a child off to school, as excited as you are for them you are scared as well. That’s how I feel when I round in the nursery. I meet these strange and small infants and their terrified parents and while I want to tell them that everything is going to be okay, I also know that a healthy amount of watchfulness is precisely what makes everything okay.

Anyone who has had a child knows that there’s an incredible amount of work involved. Physical work, emotional work. In the first few weeks of life the feedings and changings and incessant bouncing up and down accompanied to the sound of a stove vent or vacuum cleaner or white noise machine are a huge undertaking. You do it in a sort of fog, completely taken with the extraordinary creature who has just come into your life.

But in addition to this there is the other enormous piece of work most new parents face – worrying that they are doing something wrong. For nursing moms this often centers on how often and for how long their infant is breastfeeding and whether or not he or she is getting enough milk. Many of the teenage moms I’ve cared for have actually opted to pump breast milk and feed their babies with bottles just to know how much milk they are giving. While I think it’s ridiculous to make the already gargantuan task for caring for an infant any more complicated than it already it, I do understand they find this reassuring. Alternately, though, might I suggest that a baby who is peeing ten diapers a day is probably getting plenty to eat. That’s just basic plumbing.

So this morning I told a mother whose infant’s weight was down a bit that she should follow up with her pediatrician in the next 2 days. It was not unusual advice. I know her milk will come in and the baby will gain weight and I also know that if for some reason this doesn’t happen – some strange and unlikely reason – her pediatrician will recognize this and tell her what to do.

“Until then,” I said, “don’t worry. It’s our job to worry, not yours. You’ve got more than enough on your plate.”

“The pediatrician said don’t worry,” dad said waving a finger in the air. “I’m going to remember that and I’m going to remind you later.”

And mom said, “Thank you. Thank you so much for saying that.”

The other thing I say a lot is, “You’ll figure it out” because by and large this is absolutely true. Specifically when it comes to nursing. Babies may be born knowing how to suck but moms are not born knowing how to nurse. It took me two weeks, many tears, some very helpful youtube videos and a 4 day hospital stay with mastitis to figure it out myself, but I did. And Em nursed for a year. For normal people who remember that it’s okay to ask for help, it takes even less time and typically doesn’t involve a hospitalization. So well done normal people. I’ll be calling you for advice instead of the other way around from now on.

In the meantime, program the number for your child’s pediatrician’s office into your cell phone and remember it’s their job to worry when something doesn’t seem right. All you have to do is call and let them know. And you’ll know. Of course you will. You’re a parent and parents know their children. And every pediatrician knows that.