Baby came in sick, baby getting better, baby go home soon

Baby came in sick, baby getting better, baby go home soon – column

Perri Klass

BABY CAME IN SICK, BABY GETTING BETTER, BABY GO HOME SOON

We call it ”picking up a service” and it’s what we do when at the end of the month we change over our duties. Coming out of a month in the emergency room, say, you may be starting your stint on the infants and toddlers ward, so an intern who’s finishing signs over to you a list of patients.

Now, when you pick up someone else’s service you’re coming in inthe middle of a lot of stories. Your predecessor admitted all these patients, heard their detailed accounts of who they were and why they came to the hospital, has been writing progress notes in their charts, following every detail of their hospital courses. And then you take over and you have to keep track of all the threads. It’s hard to get to know these patients as well as you know the ones you admit yourself, so they tend to be a source of anxiety — until they go home. Therefore, what you want to hear when you’re picking up a service is a nice simple straightforward story. Baby came in sick, baby getting better, baby go home soon.

I was picking up a service for my first month on the general wards last fall, and the intern signing out listed a bunch of nice normal kids — came in sick but now getting better. For each of them she had prepared a file card for me: name, ID number, one-line synopsis of the problem: 2-month-old male came in with diarrhea and dehydration, for discharge as soon as drinking well. Like that. And then she told me about Melissa.

With a sinking heart, I saw that Melissa’s card was full of writing. Sure enough, Melissa was a very complicated kid. She had been born with multiple congenital anomalies. Not one of her major body systems worked normally; I went down the list with the other intern. Cardiovascular/respira- tory: she had had cardiac surgery for a malformed heart and still took medication to make her reconstructed heart work better, she had a tracheostomy tube in place because her upper airway was obstructed. Fluid/Electrolytes/Nutrition: she had a tendency to retain fluids unless she was medicated with diuretics to help her urinate it all out, she had trouble keeping the electrolytes in her blood in proper balance, she tended not to gain any weight. Gastrointestinal: her upper digestive tract didn’t work properly and she had had an operation called a Nissen fundoplication in which part of her stomach had been surgically tightened like a drawstring bag to keep the contents from refluxing up in the wrong direction. In addition, she had a gas trostomy tube, or G-tube, through which she was fed, implanted ino her stomach. And so on through Hematology and Immunology and Infectious Diseases and Renal . . . When I went and stood next to Melissa’s crib, I couldn’t even keep track of the various tubes going in and out of her. There was the trach tube in her neck, the G-tube in her belly, the Central Venous IV Line surgically implanted in her chest because all her regular veins had been damaged and scarred by repeated IV’s. There were medication schedules, feeding schedules, physical therapy schedules, lab schedules. And in the middle of it all was a one-year-old girl, with a crib full of fancy stuffed animals, lying on her back and chewing contemplatively on her thumb.

Most people think of pediatrics as the care of well children whoget sick. Children get sick; they have asthma attacks, or they get infections, sore throats and ear infections, or pneumonia or meningitis — mild diseases, life-threatening diseases, kids get sick. Or they fall out of trees and break their arms, or they burn themselves, or they eat things they shouldn’t. So you take them to the pediatrician, or maybe to the emergency room. And in fact that is much of pediatrics, and much of the joy of pediatrics — watching kids get well again, watching them bounce back to full vigor.

But there’s also a big and relatively unsung population of children who never have been well and never will be. They are severely handicapped children, children with multiple congenital anomalies, dysmorphic children. Some of them have relatively well known conditions — Down syndrome, for example (which can be associated with various medical problems) — but many of them, especially in a hospital like mine, a big academic hospital where people are interested in rare diseases, have problems you may not have heard of: Rett’s syndrome, for example, or Treacher Collins, or Pierre Robin, or CHARGE association, or Lennox-Gastaut. These aren’t fancy names for common diseases; they’re obscure conditions. As an intern you may not be exactly sure what any one of them entails — until you find yourself taking care of a child with ”absolutely classic Treacher Collins.” Each individual diagnosis is rare, but all together they add up to a large population of children who tend to require an enormous amount of medical care. I’m lumping together a very diverse group, but as a group they do present certain basic issues.

These children tend to have long problem lists. It isn’t uncommon for a child to have problems in both the orthopedic and the ophthalmologic categories, for instance — and that’s just under the letter O. You can’t take anything for granted when you’re caring for such a child — are you sure the kidneys are normal?

These children also tend to have profoundly knowledgeable parents, parents who are professionals at dealing with the medical system, at sizing up any new doctor, at finding ways to have unusual services paid for by insurance companies or by the state. Parents get used to serving as advocates for their children, refusing tests they see as repetitious or unduly painful, making sure their children get any new, possibly beneficial therapy. Often these parents know much more about the disease in question than many doctors; always they know much more about the particular child in question than any doctor; and they aren’t necessarily patient with doctors who fail to acknowledge this.

I found out many of these things in taking care of Melissa, who stayed on my service for the entire month I spent on the infants ward. I got to know her pretty well; I could recite her problem list by heart, and, inevitably, I found myself becoming her advocate. I argued the plastic surgeons into coming to look her overin hopes of correcting some of her facial birth defects. I heard myself explaining, earnestly, again and again, to the plastic surgeons, to the doctors who would be taking care of her in the intensive care unit after surgery, to anyone new who came in contact with her, ”Listen, there’s nothing wrong with her that she can’t eventually grow out of, if only we can get her growing. She can outgrow the need for a trach, she can learn to eat with her mouth, her heart is working better than it used to — and all the literature says she ought to be mentally normal!”

I was arguing, of course, that Melissa was precious, that the work invested in her, the time and trouble (including mine) was aiming toward a real and worthwhile goal. ”She has a wonderful personality,” I would insist, apropos of nothing in particular. ”She’s an adorable and playful child.” Of course, we would all have taken care of her even if she hadn’t been adorable and playful. We would have taken care of her even if she hadn’t had any prospect of outgrowing her medical problems. We would have taken care of her even if she hadn’t had any chance of being men- tally normal. And medically, the care would have been the same. But if she hadn’t had such a delightful personality, I wouldn’t have spent my scarce spare minutes making faces at her, trying to elicit her smile. And I wouldn’t have added all those irrelevant details to her problem list when I discussed her with other doctors; I was in my way apologizing for the complexity of the case, assuring them that it was a battle well worth fighting.

Taking care of Melissa, and other children like her, did of course change the way I looked at dysmorphic children. I lost the habit of the quick look-and-look-away, the almost-recoil, as I got more accustomed to various dysmorphisms and what they implied. I started thinking more about medi- cal issues: Was there a cleft palate? How bad — enough to interfere with eating, with speech? Were the ears not formed correctly — how much hearing did the child have? Were the spastic limbs held in tight contractures — and was there more to be done with physical therapy?

Caring for children with multiple anomalies makes you appreciatethe miracle of normal development for the astoundingly perfect complexity that it is. As you care for a child whose every bodily system requires your supervision, you begin to understand how effortlessly the normal body manages its affairs, and how clumsy are even our most sophisticated attempts to duplicate its calculations, its processes, its checks and balances. ”The dumbest kidney is smarter than the smartest resident,” we were told at an early lecture, and all the other organs turn out to have the jump on us as well.

The other thing you learn from a child like Melissa is how strong the push to grow and develop can be. Even with no part of her body functioning quite properly, if we could give her the calories through her IV or her G-tube she would use them to fuel as much exploration of her surroundings as she could manage. If we could protect her from infection, keep her heart working properly, she would use the relative comfort, the freedom from pain, the oxygen that her heart was pumping through her body, she would use it all to move ahead developmentally, to go from playing with her hands to playing with her toes as well. Which, in pediatrics, is the point.

COPYRIGHT 1987 Discover

COPYRIGHT 2004 Gale Group