The oasis

Better not take today's children's hospitals for granted

Alan Baker


Neonatologist Philip Sunshine, MD, remembers it clearly: a young woman coming to the hospital night after night, peering through a thick window at her sick baby boy. The year was 1965, and the mother — restricted from entering the intensive care unit — was literally an outsider looking in.

A lot has changed since then, as Sunshine, professor emeritus of pediatrics, would tell you. Doctors have learned much about how infections spread and how important it is to involve family in a child’s care, so parents are now common sights in all areas of a children’s hospital. And the hospitals themselves are more sophisticated and advanced than ever before.

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The origins of Lucile Packard Children's Hospital

Indeed, children’s hospitals in the United States have come a long way from their humble beginnings, morphing from safe havens for the poor to large, technologically advanced facilities that aim to benefit children and their families. The institutions have multiplied and expanded, becoming part of the fabric of U.S. health care. So it’s easy to forget that children’s hospitals didn’t always exist — and that without continued government and private support they could just as easily disappear.

Eighty-five percent of children in the United States are located within one hour of a children’s hospital, and more than 6 million receive care each year at one of the country’s 250 facilities. Children’s hospitals continue to expand and new ones open each year: Vanderbilt University in Nashville opened a children’s hospital in 2004, The Children’s Hospital in Denver is moving into a new, $500 million building in 2007, and a 1.2-million-square-foot expansion at The Children’s Hospital of Philadelphia should be completed in 2010.

The reason patients come to these specialized hospitals — and the importance of such facilities — seems obvious. As Christopher Dawes, president and CEO of Lucile Packard Children’s Hospital, points out, “Children have a set of needs that are very different from adults and require care in a place uniquely designed to take care of them from a clinical, social and developmental perspective.”

Yet children haven’t always had the luxury of being treated at a place tailored specifically to their needs. Children’s hospitals are relatively recent additions to the medical world; it wasn’t until 1851 that the first children’s hospital in the English-speaking world — the Hospital for Sick Children on Great Ormond Street in London — opened its doors. In the states, Philadelphia established a freestanding children’s hospital four years later.

Walk through any children’s hospital today and it’s like you’ve been whisked away to an alternative, kid-sized and kid-dominated universe: Dinosaurs and cars double as beds; bright murals splash color across the walls; surgical trays shine with Lilliputian instruments designed to make the tiniest of cuts. Early children’s hospitals didn’t look like this.

A place to be sick

The country’s first children’s hospitals were often modest-sized houses with a dozen or fewer beds and a live-in hospital matron who kept watch over her small charges. No effective treatments existed for babies, so most cared only for children 1 or 2 years and older. And because antibiotics, vaccines and other tools were yet to be introduced, physicians could often do little more for these children’s ailments than provide fluids and nourishment and prescribe rest.

“The idea of a hospital was to take children from their poor, crowded homes and offer them supportive care,” says Rutgers child historian Janet Golden, PhD, explaining that because wealthy families could afford at-home physician care, almost all hospital patients were underprivileged.

Even as hospitals grew larger, they still functioned as places where sick, poor children were literally hidden away for months, or even years, at a time. “You might have one nurse looking after 20 kids,” says Richard Goldbloom, MD, a pediatrician at Dalhousie Medical School in Nova Scotia and a scholar of children’s health and hospitals. “It was a very depressing place — right out of Dickens. Putting a child in the hospital for a lot of people in the early part of the century was like a death sentence.”

Conditions improved with certain medical advances; Golden says the discovery of effective infection prevention methods and mastery of surgical procedures, among other developments, drew other children to these facilities in the early 1900s. By the time the Great Depression hit, few could afford in-home care, and youngsters from all walks of life were filling the beds of hospitals dedicated to children. 

“We saw the transformation of the hospital from a place for the sick poor to a place for the sick, and from a place for supportive care to a place for effective diagnostic and therapeutic efforts,” says Golden. 

Alan Baker

A place to get better

Today’s children’s hospitals — larger, freestanding facilities — cater to all types of children and diseases. Their physicians and staff are trained in pediatrics. Their physical space is designed to be kid-friendly and minimize trauma for young patients. And many, like Packard Children’s Hospital, are affiliated with medical schools and include research and the training of future pediatricians as part of their core mission.

Thanks to what Stanford pediatrics professor Paul Wise, MD, MPH, calls a recent “explosion” of advances in pediatric care, hospitals now have an arsenal of weapons to manage chronic illnesses and combat diseases — and patients have access to both highly sophisticated and unique care. Case in point: 2-year-old heart transplant patient Serafina Akard, who was given an experimental heart device that kept her alive for eight weeks while she waited for a donor heart. Akard, who was treated at Packard, was only the fourth person in the country to receive the device.

Other beneficiaries of advanced care: babies in the neonatal intensive care unit at Children’s Hospitals and Clinics in St. Paul, Minn., who spend their first days in a warm, softly lit room designed to replicate the feeling of a mother’s womb. The hospital uses a special lighting and sound system to create the effect. 

Wise, an expert in children’s health policy, says children’s hospitals often provide care that couldn’t be offered elsewhere. “There is no way most local hospitals can meet the needs of seriously ill children,” he says. “Serious medical disorders requiring specialty care are rare in kids, so every community hospital can’t have a pediatric gastroenterologist or pediatric oncologist on staff.”

And unlike most other hospitals, children’s hospitals tend to a young person’s special developmental and emotional needs. As Ann Arvin, MD, professor of pediatrics and an infectious disease expert at Packard Children’s Hospital, points out, “These children are ill at the same time they need to achieve certain milestones and grow up.” To address this, children’s hospitals typically have in-house schools and teachers, pediatric social workers and “child-life” specialists — experts in children’s developmental needs — to help address their concerns and help kids feel like kids.

Goldbloom, who began practicing medicine more than 50 years ago, says the biggest change during his career is the hospitals’ involvement of parents in care. As recently as the 1960s, hospitals kept parents out of care decisions and restricted visits. Among the reasons: Hospitals worried that such visits could worsen homesickness and adversely affect recovery, and some physicians wished to limit the number of nosy parents breathing down their necks.

But a real shift has occurred in the past several decades. Though experts say it’s hard to pinpoint which factors are responsible for the changing attitude, physicians now strive to involve parents in their child’s care. The new approach, adopted by most children’s hospitals, means that parents are involved in every step of the child’s treatment and that family members are tended to almost as much as the patient.

The Akards experienced this family-focused treatment last year, when they first learned that Serafina had dilated cardiomyopathy and needed a new heart. The staff that cared for Serafina “explained things to us over and over again and never made us feel like we were intruding,” says her mom, Suzanne. They also helped entertain Serafina’s older brother; the active little boy spent hours at Packard’s Forever Young Zone, a play area for patients and families. “He still really misses the hospital,” says Akard.

Akard says this type of support is crucial for parents and siblings, who are likely overwhelmed with feelings of shock and trauma — and experts believe this family-centered approach also results in better overall care of the patient. According to a small Packard study, parents who are actively engaged in their child’s care are better able to comfort their child, care for their child at home and give reports to health-care providers on their child’s status.

Harvey Cohen, MD, PhD, professor and chair of pediatrics and chief of staff at Packard, also maintains that physicians wouldn’t be allowed to deliver necessary, but “sometimes unpleasant,” treatments for their patients if they didn’t have the parents’ trust.

A place in the future?

Demand for children’s hospitals is growing — admissions increased by 10.5 percent between 1995 and 2000. But the future of these hospitals is not assured.

How to help:

To support Lucile Packard Children’s Hospital, contact the Lucile Packard Foundation for Children's Health: www.lpfch.org.

In recent years, the supply of skilled pediatric specialists has dwindled. Packard CEO Dawes calls this one of the biggest threats to children’s hospitals. Pediatrician Arvin says that academic medical institutions are sustaining their training programs only with difficulty. One reason: Specialized academic pediatricians train for several years beyond the general pediatrics residency and must wait longer than other physicians to earn what Arvin calls a “salary in any way commensurate with their expertise.”

Another threat to children’s hospitals is financial. Many children’s hospitals are already struggling, and a big reason is their open-door policy: They accept and treat patients regardless of their ability to pay. Medicaid — the country’s largest health insurer for children — is also to blame. In California, the program typically reimburses hospitals less than 50 cents for every dollar spent on services.

“For every child you take care of who is on Medicaid, you lose money,” explains Sherri Sager, chief government relations officer at Packard.

Since Medicaid covers half of the average children’s hospital’s costs for care, proposals to curtail Medicaid eligibility or lower its hospital reimbursement rates — which are frequently batted around by state and federal legislators — make children’s hospitals’ proponents nervous.

“Children’s hospitals are a fragile enterprise,” says Arvin.

Fortunately, children’s hospitals have been able to turn to philanthropy. The National Association of Children’s Hospitals and Related Institutions reports that 80 percent of children’s hospitals have a foundation dedicated to fundraising. (Packard is served by the Lucile Packard Foundation for Children’s Health.) Says Dawes, children’s hospitals routinely use gifts for capital expenditures.

In Packard’s case, donors gave $500 million over the past five years for clinical, research and training programs; the new pediatric emergency room was almost entirely sponsored by gifts. Arvin says the hospital would not even exist if not for the outpouring of donations more than a decade ago.

It makes sense that community members would rush to fill these funding gaps. Today’s children’s hospitals, after all, remain one of the nation’s few institutions dedicated to serving young people and their families. And most of us can see the value in that.

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