At children's hospitals nationwide, a growing number of very sick children are finding hope in never-before-tried treatments. And the quality of care isn't just important to those families, a new poll found that 40 percent of Parents readers have a child who has been treated at a pediatric hospital. We took both routine care and difficult cases into account for our latest survey of children's hospitals. Last fall, members of the Children's Hospital Association (formerly the National Association of Children's Hospitals and Related Institutions) each provided more than 1,000 pieces of information.
We crunched the numbers with guidance from medical advisors, emphasizing treatment-success rates, research studies, and doctors' experience. Where there was a close call, we gave the edge to hospitals that provide extra TLC for families of outpatients and inpatients: private NICU rooms, play areas that are open 24/7, and music and art therapists to hang out with kids. Whether a child needs a cast for a broken arm or a bioengineered cancer drug, an asthma inhaler or a double lung transplant, these top hospitals have children covered -- and then some.
It's the leader in kids' cancer research. Besides using a successful treatment for the sickest leukemia patients that was developed by oncologist Stephan Grupp's, M.D., Ph.D., it has masterminded a way to wipe out certain types of neuroblastoma and lymphoma with a single pill. Researchers found that some kids have a genetic snafu in the expression of a protein that's linked to the diseases, and they worked with a drug company to develop medicine that inhibited the protein. Seven of eight kids studied with lymphoma, and one of two with neuroblastoma, are in remission. "Targeted therapies for children with cancer are a hot area of research," says John Maris M.D., director of the hospital's Center for Childhood Cancer Research. "Chemotherapy kills off healthy cells too, while our new treatments zero in on just the bad ones."
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What do a 9-year-old who has six new organs and a toddler with autism have in common? They're among the thousands of patients taking part in high-profile studies: Boston Children's published 2,000 research papers in the last two years. The latest autism work focuses on kids who have genetic links to the disease; they're being given medication that interferes with the chemical pathways thought to trigger symptoms. "When we tested it in animals engineered to have the same genetic abnormalities, most of their symptoms disappeared," says Leonard Rappaport, M.D., chief of the division of developmental medicine. In the pediatric transplant center, surgeon Heung Bae Kim, M.D., pulled off a medical first: In a 14-hour operation, he transplanted six organs simultaneously in Alannah Shevenell, who was battling a rare tumor that engulfed her entire abdomen. "Alannah was so sick before the surgery that she had never even been to school -- we relied on a tutor," says her grandmother Debi Skolas. "Now I have a bunch of her fourth-grade classmates running around the house and I can never find where she put my phone, but I wouldn't change anything for the world."
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When 8-year-old Samantha Schaller suddenly developed heart failure, a rare side effect from a common virus she'd caught, doctors at Cincinnati Children's tried a new approach to get her back to her spirited self. The fix her family pinned all their hopes on: a temporary RotaFlow Left Ventricular Assist Device, or L-VAD, for short. "It's a surgically inserted pump that puts the heart on vacation while we treat the virus that caused the problem," says David Morales, M.D., chief of cardiothoracic surgery. "Only a couple of hospitals have experience using a temporary L-VAD." Four days after Samantha got the device, her own heart had healed, and the L-VAD was removed. She spent about another week in the hospital recovering. "A music therapist came in to play her Taylor Swift songs on the guitar," says her mom, Heather. "The hospital took care of me too. I was so anxious once that the hospital's holistic healing specialist even gave me a back rub!" And the posthospital months have been encouraging: Except for taking heart medication and getting more frequent checkups, Samantha is enjoying a normal life.
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For her entire life, 6-year-old Lillian Yuska has been in and out of the hospital with gastrointestinal problems. "She was treated at many well-known facilities, examined by numerous specialists, has had countless tests and procedures," says her mom, Danielle. "We have been blessed in that many serious medical conditions were ruled out, yet it was frustrating not to have an answer." When Lillian came to Children's Hospital of Wisconsin two years ago, she had a new test to look at all of her genes. Doctors here had been the first in the nation to sequence the entire genome of kids with unexplained illnesses. They hunt for mutations in every gene and try to match their findings to a known condition. "We were practically dancing in the hallway when we discovered what was wrong with Lillian," says David Bick, M.D., medical director of Genetics. The diagnosis: tricho-hepato-enteric syndrome, a rare inherited bowel disorder. Although there isn't a treatment yet, doctors will monitor her for liver problems and heart disease, complications associated with the condition. "We are also in the process of joining an international registry to find out more about other children who have the same condition," says Danielle.
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Last year, the first pill to treat an underlying cause of cystic fibrosis (CF) hit the market, thanks to initial testing at Children's Hospital Colorado. "I burst into tears of gratitude when I heard about it," says Jennifer Heinicke, whose 8-year-old daughter, Annelise, was diagnosed with CF during a routine newborn screening. The medication, called Kalydeco, targets a genetic mutation that interferes with the transport of chloride in some patients. "It worked beyond my wildest dreams," says Frank Accurso, M.D., head of the hospital's pulmonology department, who is now testing a combo of Kalydeco and another medication that would potentially help up to half of the patients with CF. Since Annelise started taking the tablet last Valentine's Day, she hasn't missed school because of breathing problems and has been playing soccer, hiking, and tap dancing. Says Jennifer: "I can barely keep up with her."
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For two thirds of her life, 12-year-old Leah Koller has battled glioma, an invasive brain tumor. Fortunately, Regina Jakacki, M.D., the hospital's director of pediatric neuro-oncology, has been working on a vaccine to stimulate a child's immune system to target proteins unique to tumor cells. Just as Leah's glioma had gotten out of control two years ago -- and her sixth round of chemo at the hospital failed -- the vaccine was open for testing in children. "After nine weeks, the tumor actually seemed worse, and we wondered if we did the right thing," says her mom, Raelene. "But then it started to shrink -- and now 80 percent of it is gone." In the last two years, about three dozen cancer patients have received the vaccine and it's helped more than half of them. Says Dr. Jakacki: "My team and I were hoping to prolong the lives of these kids, but now we're thinking we're onto a cure in some cases."
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When Texas Children's pediatric neurologist Angus Wilfong, M.D., heard about pinpoint laser technology to treat prostate cancer a couple of years ago, he thought, "Why couldn't we use it to perform brain surgery to treat seizures that don't respond to medication?" Less than a year later, he pioneered the world's first MRI-guided laser surgery to zap epilepsy-causing brain lesions, and he has successfully treated 20 children, most of whom are now seizure-free. With the regular type of surgery, "patients remain in the hospital for a week," he says. "Thanks to these less invasive and more accurate techniques, kids just stay overnight." About a dozen other hospitals are now using his technique.
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Eighteen months ago, the hospital's chief pediatric surgeon, Ronald Hirschl, M.D., summoned transplant and other surgeons for a history-making operation: "We needed them to remove the liver of a 13-year-old boy who had been in an accident, repair the tears in his liver and veins, and then put the organ back in." The procedure, called autotransplantation, had never been successfully done in a trauma case. "The surgeons said, 'Okay, we'll take a look,'and just a couple of hours later 50 staff members were working furiously to save the child," recalls Dr. Hirschl. "We were able to repair enough of the damage to stabilize him. Now, after more surgeries, he has been able to resume all of his regular activities."
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There are preemies -- and then there are micropreemies. Local hospitals send Nationwide Children's their tiniest newborns because its NICU boasts a tremendous 78 percent survival rate for babies born between 22 and 27 weeks' gestation. The key: "We research the effectiveness of every last detail, down to the tape we use," says Edward Shepherd, M.D., the hospital's chief of neonatology. The preemies not only survive, they thrive. "At the hospital's preemie reunion last fall, my 18-month-old son, Nicholas, was playing with the little girl who had been in the NICU bed next to him," says Melissa Metz. "Looking at Nicholas now, it's hard to believe that he was born four months too soon and weighed just a little more than a pound. He's hit every developmental milestone."
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Last summer, Children's Memorial Hospital got a new name and new home, but it still has the same experienced staff. Lurie Children's offers one of the largest programs in the country to treat vascular rings, a congenital heart condition in which the aorta forms a complete ring around the trachea and esophagus, so it's difficult for a child to breathe, eat, or swallow. "Although this is a rare problem, we've seen more than 500 patients with it," says Carl Backer, M.D., head of cardiovascular-thoracic surgery. "We've been able to refine our medical imaging to pinpoint exactly where the ring occurs and surgically repair it with precision."
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Although some of these 15 runners-up don't have as much research funding or studies as Parents' top picks, they still provide excellent care.
11. Riley Hospital for Children, Indianapolis
From offering a meditation room to room service, laundry facilities to sibling play areas, Riley Hospital for Children at Indiana University Health takes care of the families of patients as well as it cares for the patients themselves. The hospital ranked number 4 in Parents' 10 Best Children's Hospitals for Preemie Care.
12. Children's Healthcare of Atlanta
The hospital offers more than 17 neighborhood locations, including five outpatient centers for its cardiology program. Children's Healthcare of Atlanta ranked number 5 in Parents' 10 Best Children's Hospitals for Heart Care.
13. Monroe Carell Jr. Children's Hospital at Vanderbilt, Nashville
In 2011, the hospital provided 480 autism evaluations -- nearly half of its total volume -- at no charge to the family or the insurance carrier. Monroe Carell Jr. Children's Hospital at Vanderbilt ranked number 8 in Parents' 10 Best Children's Hospitals for Preemie Care.
14. Children's Mercy Hospitals & Clinics, Kansas City, Missouri
The hospital boasts one of the most active parents' advisory boards of any facility in our survey, with 29 moms and dads meeting once a month. The hospital has a Children's Advisory Board as well. Children's Mercy Hospitals & Clinics ranked number 4 in Parents' 10 Best Children's Hospitals for Orthopedic Care.
15. Primary Children's Medical Center, Salt Lake City
A government-funded center for child-health research, Primary Children's Medical Center is conducting more than 1,200 studies. The hospital ranked number 8 in Parents' 10 Best Children's Hospitals for Heart Care.
16. Children's National Medical Center, Washington, D.C.
The hospital's program to educate parents about sudden infant death syndrome is highly acclaimed. Children's National Medical Center ranked number 10 in Parents' 10 Best Children's Hospitals for Emergency Care.
17. Children's Hospital Los Angeles
The hospital is a leader in injury prevention. Programs, such as LA Street Smarts, educate families about pedestrian safety and car seats. Children's Hospital Los Angeles ranked number 7 in Parents' 10 Best Children's Hospitals for Orthopedic Care.
18. UH Rainbow Babies & Children's Hospital, Cleveland
The hospital's neonatal intensive care unit is one of the most family-friendly in Parents' survey, offering free meals for nursing moms, a donor milk program, and a sibling play area. UH Rainbow Babies & Children's Hospital ranked number 5 in Parents' 10 Best Children's Hospitals for Preemie Care.
19. St. Louis Children's Hospital -- Washington University
The hospital offers an 8,000-acre rooftop garden with more than 7,000 plants and flowers. A horticulture therapist works with patients on gardening activities. St. Louis Children's Hospital -- Washington University ranked number 10 in Parents' 10 Best Children's Hospitals for Heart Care.
20. Children's Medical Center of Dallas
The hospital's Child Life program, which supplies support and distractions to sick kids and their families, has long hours, running until midnight daily. The joint orthopedics program between Children's Medical Center, Dallas, and Texas Scottish Rite Children's Hospital ranked number 8 in Parents' 10 Best Children's Hospitals for Orthopedic Care.
21. Seattle Children's Hospital
Seattle Children's Hospital has a low nurse-to-patient ratio, and 100 percent of the nurses in critical departments such as radiology and emergency care are certified in Pediatric Advanced Life Support.
22. Rady Children's Hospital -- San Diego
The hospital provides 35 support groups for families, including 13 for those with autism and other developmental delays. Rady Children's Hospital -- San Diego ranked number 5 in Parents' 10 Best Children's Hospitals for Orthopedic Care.
23. Lucile Packard Children's Hospital at Stanford, California
The hospital published 750 studies in 2011 and spent nearly $70 million on research.
24. New York-Presbyterian Morgan Stanley/Komansky Children's Hospital, New York City
Publishing 85 heart-related studies in 2011, the hospital ranked number 4 in Parents' 10 Best Children's Hospitals for Heart Care.
25. Miami Children's Hospital The hospital recently implemented an orthopedic "fast track" system in the emergency department to reduce wait times. It also has a very strong asthma-management program.
Originally published in the March 2013 issue of Parents magazine.
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