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“Children Are Dying”
Comments () | Published May 22, 2013

Some hospitals have resorted to bartering with one another to secure even a small supply of nutrients, and many are rationing.

At least one NICU in the District is administering some trace elements only three days a week instead of seven. At Atticus’s hospital, no patients heavier than 2½ kilograms (5½ pounds), including NICU babies, are getting intravenous phosphorous. “You could have a brand-new, full-term baby and they don’t qualify,” a staff member says. “There are really sick babies and one-, two-, three-year-olds that don’t get anything at all because we’re rationing it for our tiniest preemies.”

“It almost makes me cry—our patients are starving because of drug shortages. How can this happen in this country?” says ASPEN past president Jay Mirtallo, a professor of clinical pharmacy at Ohio State University. “In the last three years, there hasn’t been one PN product that hasn’t been in short supply. I’ve traveled all over the world talking about parenteral nutrition, and our colleagues in Europe, South America, and Asia just look astounded and ask how this can be such a significant problem when they have no issue whatsoever in any of their countries.”

• • •

Why haven’t you heard about the shortages? Most people haven’t. Many hospital administrators, doctors, and even NICU nurses are unaware that patients are being shortchanged. What’s more, several hospital staff members say that “virtually none” of the patients or their parents know that their intravenous nutrition is so incomplete that they may be in danger of serious deficiencies.

Atticus’s parents—who asked that their last name not be used—are an exception because Catherine practically lives at the hospital, leaving only to sleep at a nearby Ronald McDonald House. She has gone home just three times in three months. She hears the nutritionists on their daily rounds, making frantic calculations. At 11 weeks, Atticus has received no copper, chromium, and selenium since birth, and the hospital is now out of potassium phosphate.

“These deficiencies and conditions don’t exist except in historical data or in Third World countries.”

“I feel so helpless—I want to go rob a hospital somewhere,” Catherine says. “My baby’s been fighting and fighting, and to take away the most important things he needs so badly, just because of a regulation? I pay my taxes! What’s the FDA doing?”

Caitlin, a NICU nutritionist in DC who requested a pseudonym, says babies are having renal problems she’s never seen before: “I’ve noticed a lot of weird labs. I know something’s going on, but we haven’t figured it out. These deficiencies and conditions don’t exist except in historical data or in Third World countries.”

At Children’s National Medical Center in DC, doctors were perplexed in December 2012 when three extremely premature infants in the NICU developed a rash in the diaper area, with blisters and bright-red lesions on their knuckles and the tops of their feet and dark marks like lip liner around their mouths.

Doctors investigated whether the babies were reacting to diaper cream, medications, a virus, a bacterial infection, or a new adhesive. Then, about a week after the onset of symptoms, the physicians and a NICU dietitian put together the fact that all three babies had been receiving PN on and off since birth—and the hospital had run out of zinc three weeks earlier. A test confirmed that the babies were suffering from a severe zinc deficiency, a condition that neonatologist Lamia Soghier says she’d never seen in infants on PN before.

The hospital was able to order an emergency supply of IV zinc from Hospira, the sole remaining manufacturer. “Immediately you could see an improvement,” says Soghier, who submitted a field report to the Centers for Disease Control and Prevention (CDC). “They were totally recovered about a week to two weeks after.”

A forthcoming report will detail similar zinc deficiencies in four neonates at Texas Children’s Hospital, one of whom died of liver failure. “There are many more nationally,” says Texas Children’s neonatologist Steve Abrams, who has been outspoken about the shortages, unlike many other hospital personnel.

Since then, Children’s National Medical Center has been able to procure additional zinc, according to Ursula Tachie-Menson, acting chief of the pharmacy division. For other nutrients in shortage, such as calcium and phosphorous, Tachie-Menson says, “we’ve called colleagues, friends, whomever, to try to get it if we’re getting very critical—like ‘Oh, my gosh, in a week we’re going to run out.’ People have taken pity on us. Some adult hospitals say, ‘We’re willing to spare you a few vials.’ We’re happy when we can even get two vials.”

• • •

Health-care providers are concerned about many possible complications because of the large variety of shortages. A selenium deficiency, for example, can lead to chronic heart disease; a lack of chromium and copper can create neurological deficits. According to a 2012 Journal of Clinical Oncology article, a shortage of PN multivitamins caused several patients at St. Jude Children’s Research Hospital in Memphis to develop Wernicke encephalopathy, a serious neurological disorder.

Hospitals are prioritizing neonates, but the shortages affect other patients, too. At the time of this writing, Ethan, a chatty 21-month-old from Columbia, is still at Georgetown University Hospital more than a month after having bowel surgery. Because the hospital is short on calcium, phosphorous, and lipids, Ethan’s PN is missing them. As a result, his phosphorous and calcium levels are so low that his mother, Emily Greene, says his doctors are worried, and he’s losing weight that “took us forever to gain.” He gets zinc only every other day.

“No one understands. We tell hospital officials, but even the higher-ups outside of our unit don’t get how bad it is. It’s like, who do I need to sleep with to get something done?”

“All the vitamins that normal kids get with food, our kids can’t eat,” Greene says. “I explain to my friends and family that it’s like taking out half of a baby’s formula or cutting out half the nutritional value in food. That’s what’s happening to our kids. We’re unable to provide something essential for our child, and that is the most frustrating thing for a parent. They’re already so weak, and then you weaken them further with these vitamin deficiencies. You’re just waiting for them to get sick.”

Health professionals say they’re already seeing complications, but it could take years to fully assess the long-term effects. “You’re creating a deficiency, and the clock starts now,” Mirtallo says. “You don’t know when that deficiency is going to make itself apparent, but it is going to happen.”

• • •

Caitlin, a four-foot-ten dynamo, angrily jabs a chopstick over a meal at Sushiko in Chevy Chase. The NICU nutritionist’s dinner has more magnesium and phosphorous than Atticus has received in his entire life.

She describes how NICU teams typically order phosphorous when a patient’s lab level drops below 4 milligrams of phosphorous per deciliter of blood, which is considered worrisome. But because her hospital is running low, it can’t order phosphorous unless a patient’s labs fall to 3 milligrams or even 2. Two milligrams itself can be dangerous, and anything below that, she says, can lead to seizures and death.

“Until there’s a big enough outcry, lawmakers and the FDA don’t care,” Caitlin says. “No one understands. We tell hospital officials, but even the higher-ups outside of our unit don’t get how bad it is. It’s like, who do I need to sleep with to get something done?”

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Posted at 10:30 AM/ET, 05/22/2013 RSS | Print | Permalink | Comments () | Washingtonian.com Articles