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“Children Are Dying”
Special report: Because of nationwide shortages, Washington hospitals are rationing, hoarding, and bartering critical nutrients premature babies and other patients need to survive. Doctors are reporting conditions normally seen only in developing countries, and there have been deaths. How could this be allowed to happen? By Alexandra Robbins
Because of nationwide shortages, infants are not receiving some of the critical nutrients they need to survive. Photograph by Getty Images.
Comments () | Published May 22, 2013

When the hospital monitor chimes again, Atticus’s parents stop talking and look up at the screen. A light blinks an ominous red as the baby’s breathing rate falls. This alarm lasts much longer than the previous two. Catherine and Byron spring to the foot of Atticus’s bassinet and rub his feet. “Make sure you breathe,” Catherine tells her 11-week-old son. She and her husband keep one eye on the baby while watching the monitor. Atticus coughs.

The chiming continues, a gentle sound at odds with the red flashes. The calm of the neonatal intensive-care unit (NICU) can be deceptive. Just minutes ago, Catherine explained, “You hear ‘beep beep.’ It’s really subtle, but then you see people running down the hall and you hold your breath.”

At 11 weeks, Atticus has received no copper, chromium, and selenium since birth, and his hospital is now out of potassium phosphate. Photograph courtesy of the family.

Atticus is a happy, curious baby with brown eyes and impressive blond hair currently hidden by a cap. He likes Disney songs and stares intently at the picture books his parents read to him. He loves Yertle the Turtle but not Horton Hatches the Egg. His parents know this because when they read Yertle, Atticus squints happily, but when they tried Horton, his oxygen levels dropped.

Atticus loves to be held, but he’s often not stable enough for that. If he’s having a good day, his mother asks the NICU staff if she can pick him up. He’s so charming that he has a following in the hospital—several nurses come to visit him before their shifts. They’re happy to see him fight hard when they have to adjust his pressure cuff or prick his heel, which happens a lot. They call him feisty.

He’s had to be. Atticus was born four months early, at a gestational age of 24 weeks. His doctor at a Virginia hospital pronounced him “a highly optimistic pound and a half” at birth; he came out crying and trying to breathe on his own.

But when Atticus was two weeks old, his intestine ruptured and he was airlifted to this Washington-area hospital for surgery. There were so many medical personnel that Catherine and Byron couldn’t ride with their baby. As they raced by car to the hospital, they saw the helicopter carrying their son fly past them overhead.

“Okay, he’s coming back up—there we go,” Byron says. The chiming stops. A few minutes later, when his mother strokes his cheek, Atticus opens his eyes for a heartbeat, uncurls a perfect hand about the size of a quarter, smiles an unforgettable baby smile, and settles back to sleep.

• • •

Over the last weeks, Atticus has battled six types of E. coli, his kidneys’ shutting down, multiple infections, and heart surgery, which “he handled like a champ,” his father says. “He’s overcome everything that’s been put in front of him.”

Except for a mind-boggling problem that Atticus’s hospital—one of the most prominent in the country—has been powerless to solve: Atticus isn’t receiving some of the critical nutrients he needs to survive.

Doctors and pharmacists say that because of nationwide shortages caused by a combination of factors—manufacturing problems, a market with few incentives for companies to produce low-profit drugs, and the government’s delayed and inadequate action—thousands of patients are being malnourished.

There are 300 drug, vitamin, and trace-element shortages in the US, the highest number ever recorded.

Atticus’s gastrointestinal tract, like that of many NICU babies, isn’t mature enough for digestion, so he must rely on intravenous nutrition, a formulation called parenteral nutrition (PN), typically made up of 20 nutrients. Some babies, as well as hundreds of thousands of children and adults, rely on PN, sometimes for months or years.

At the time of this writing—some shortages come and go by the week—Atticus’s hospital is low on intravenous calcium, zinc, lipids (fat), protein, magnesium, multivitamins, and sodium phosphate; it’s completely out of copper, selenium, chromium, potassium phosphate, vitamin A, and potassium acetate. And so are many other hospitals and pharmacies in the country, leading to complications usually seen only in the developing world, if ever.

In Washington, for example, health professionals blame calcium deficiencies for rising numbers of NICU babies—also called neonates—with metabolic bone disease, poor growth, and fractures, including a baby with a broken thigh bone.

• • •

Experts call the nutrient shortage a public-health crisis and a national emergency—and are astounded that the government and manufacturers have let the situation become so dire.

“Children are dying,” says Steve Plogsted, a clinical pharmacist who chairs the drug-shortage task force of the American Society for Parenteral and Enteral Nutrition (ASPEN). “They’re not getting any calcium or any zinc. Or they’re not getting any phosphorous, and that can lead to heart standstill. I know of a neonate who had seven days without phosphorous, and her little heart stopped.”

“I’ve never seen anything like this in my entire career, and I’ve been a pharmacist for 40-some years,” says Michael Cohen, president of the nonprofit Institute for Safe Medication Practices (ISMP) and a 2005 MacArthur Foundation fellow. “This should never be allowed to happen.”

There are 300 drug, vitamin, and trace-element shortages in the US, the highest number ever recorded by the University of Utah Drug Information Service, which began tracking national shortages in 2001. Approximately 80 percent of these are generic injectables, or drugs given intravenously.

Clinicians have reported at least 15 deaths attributable to drug shortages since 2010, and there almost certainly have been many more. There have also been serious but nonfatal complications—as well as errors made when hospital staff substituted other drugs with which they were less familiar. Patients have woken up in the middle of surgery, and infants have been burned and scarred. In 2011, nine patients died and ten others developed infections when an amino-acid shortage led Alabama hospitals to use a substitute PN that turned out to be contaminated.

“Our patients are starving because of drug shortages. How can this happen in this country?”

There are no substitutes for vitamins, minerals, and trace elements, though. Zinc is zinc, and without it neonates can suffer from growth and immune-system problems. A copper shortage interferes with zinc metabolism, “which will cause white-blood-cell production to fall to zero, and you have no cellular protection from infection,” Plogsted says. “You need phosphorous to make energy and as an acid-based mechanism in the body. Acidosis can prevent a child from growing, but what shows up soonest in neonates is no energy, which equals no heartbeat. No energy is pretty much the end of the trail.”

The Children’s Hospital Association (CHA) estimates that each year at least 120,000 NICU babies need parenteral nutrition, and another 370,000 other patients receive PN in the hospital, according to the Agency for Healthcare Research and Quality.

The nutrients in shortage aren’t rare. “We’re talking about zinc, phosphorous, calcium—trace elements,” says CHA president Mark Wietecha. “These aren’t the latest genetically modified drugs or something coming out of modern high-tech environments. These have been around for decades.”

The shortages affect every patient using intravenous nutrition, but neonates are the most vulnerable because they have no reserves. If a hospital is out of phosphorous, for example—and many hospitals are critically low—the babies have no storage to draw on.

“If we run out of phosphorous, there definitely will be deaths,” says a NICU dietitian in a DC hospital. “At this point, we’re not even trying to give enough to get patients into a normal range. We’re giving just enough to prevent them from dying.”

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