“Children Are Dying”-special report

http://www.washingtonian.com/articles/people/children-are-dying/#

“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 (0) | 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 notHorton Hatches the Egg. His parents know this because when they readYertle, 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.
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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.”

​

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?”

(from comment section: I'm a fellow NICU mom (Now 3 yrs old) I have an idea that may help. If little Atticus is allowed even minimum mama milk feeds (1-2cc), this may help. Immediately prior to mom pumping she could put a little of his saliva on her nipples, this causes her body to recognize the shortage of minerals and makes her produce those in higher amounts in her milk. Then give that pumping at his next feeding. It isn't much.. but it is something.)

 

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