More than three million children are hospitalized annually. For parents, the problem is finding a good one and one you trust. Child magazine can help. The publication recently released the results of a new survey naming the country’s 10 top children's hospitals. Here’s an excerpt of the article:
The 10 Best Children’s HospitalsSince 2001, Child has conducted a detailed, data-driven survey every other year to pinpoint which pediatric institutions provide the leading-edge medical treatments and care. Check out the winners, plus the top contenders in six specialty areas.
Shari DeCarlo was four hours into labor in a hospital in suburban Cleveland when her nurse noticed the baby’s heart rate wasn’t responding normally to contractions. “The pregnancy showed absolutely no signs of trouble and the baby wasn’t early — Shari’s due date had actually passed by two days,” says her husband, Michael Kerkel. But soon it became clear that something was very wrong — and that the hospital, which didn’t have a neonatal intensive care unit, wasn’t equipped to care for the couple’s child.
DeCarlo had an emergency C-section and her doctors suggested that the 6 lb., 11 oz. baby girl—whom Kerkel says was “bright blue” at one point — be transferred to Rainbow Babies & Children’s Hospital, one of two pediatric facilities in the city. “She was so sick that they asked my wife and me, ‘If we were to lose her on the way to Rainbow, would you want us to resuscitate her?’”
Day after day, in children’s hospitals across the country, parents face life-and-death decisions, choices they have to make knowing little about the hospital itself. Enter the Child magazine survey — the only data-driven comparison of the nation’s children’s hospitals, providing parents with crucial medical information that isn’t available anywhere else.
Our comprehensive 247-question survey, guided by the leading pediatric experts listed on page 100, examines vital medical infomation including survival rates, the number of complex procedures and intricate surgeries conducted, volume of research studies, efforts to reduce medical errors, and the quality and training of the doctors and nurses — as well as child-friendliness, support for families, and community involvement. It was sent to the 116 full members of the National Association of Children’s Hospitals and Related Institutions last August. Seventy-six hospitals completed the survey. The responses were graded to determine the best hospitals overall and the leaders in six pediatric subspecialty areas. Among the trends we discovered when analyzing the surveys: More hospitals are using new technology to reduce medical mistakes. There’s also increased emphasis on keeping healthy kids well through community services like free vaccines, car seat checks, and violence-prevention efforts.
As for DeCarlo and Kerkel, their daughter survived the ride to Rainbow — and spent seven weeks in the hospital getting well. “We were thrust into a world we never knew existed,” says DeCarlo.
You don’t have to be. Much of being a good parent involves being informed. Chances are your local hospitals deliver good care, but should your child have a critical or chronic condition, it’s crucial to know where the most advanced work is being done, where you might want to go for a second opinion, and what questions you need to ask. Read on for details about the winning hospitals, including a personal story about each one.
1. The Children’s Hospital of Philadelphia (CHOP)
Current Research Studies: 1,536Cutting-Edge Treatments:Developed a newly approved vaccine for rotavirus, a virus that causes high fever, severe vomiting, diarrhea, and hospitalizations in up to 70,000 American kids under age 5 annually; pioneered new therapies to treat neuroblastoma, the most common cancerous solid tumor occurring during early childhood; and opened the world’s first center to collect and analyze DNA profiles on as many as 100,000 children to understand the genetic causes of childhood diseases.
Compassionate Care: Provides weekly movie nights with popcorn; a Sony PlayStation in 125 new rooms; an in-hospital TV station featuring shows like CHOP Idol (patients compete and vote in a singing competition à la American Idol); and more than 30 family support groups.
Community Focus: Offers a complete child-abuse and maltreatment center, establishing one of the nation’s first fellowship programs for the specialty; makes housecalls to pinpoint possible allergens for certain children with severe asthma; and checked more than 1,000 car seats in 2005 and trained 30 technicians how to do so.
It’s 3 a.m. in the neonatal intensive care unit (NICU) of The Children’s Hospital of Philadelphia, and Naomi Shapiro is holding her infant daughter, Eliana. The 2-month-old is recovering from a delicate three-hour surgery to remove a tumor that occupied 40% of her chest. “Her doctor told me it was the equivalent of having an elephant stand on her,” says Shapiro. But on this night, Shapiro’s attention is divided between her own daughter and another child.
“I was startled by the whipping sound of helicopter blades, and moments later a team of people wheeled a baby who hadn’t even been cleaned yet into the NICU,” she recalls. “And I thought: ‘It’s 3 in the morning, what can they possibly do for this child now?’” A couple of minutes passed, and the surgeon who operated on Shapiro’s daughter examined the baby.
“It seemed he ordered a dozen or so tests, and, again, I thought, ‘How are you going to get them done at 3 in the morning?’” It wasn’t long after nurses started making calls that equipment began rolling into the NICU, recalls Shapiro. And a few hours later, the tests were done, the child had a diagnosis, the OR was on hold, and all the doctors were waiting for was consent from the father, who was still en route from the hospital where the baby was born. “At that moment, it dawned on me that this huge hospital is like a well-tuned orchestra, and every department, every service is in perfect synchrony.”
2. Children’s Hospital Boston
Current Research Studies: 751Cutting-Edge Treatments: Reconstructed defective bladders of kids using their own cells, marking the first time tissue engineering has rebuilt a complex internal organ in humans; successfully operated on 22-week-old fetuses diagnosed with hypoplastic left heart syndrome (a condition in which the left side of the heart is underdeveloped and can hold very little blood), paving the way for surgeries after birth to go more smoothly; and detected abnormalities in the brain stems of babies who’d died of sudden infant death syndrome (SIDS), which may lead to a test to determine infants at risk for the disease.
Compassionate Care: Provides a “Puppy Pre-Op” clinic, where kids are prepared for a procedure by watching a stuffed animal go through it; a supervised outdoor playground; Big Apple Circus clowns; one of the nation’s oldest pediatric palliative (end-of-life) care programs; and free meals for breastfeeding mothers.
Community Focus: Runs one of the U.S.’s most comprehensive pediatric obesity clinics; distributes free bike helmets in schools; and successfully advocated for the creation of a statewide pediatric mental health commission.
It had been five months since Alyson and Michael Rolfe’s first child, Charles, was born. From tests done during the pregnancy at Children’s Hospital Boston, the couple knew their son would have gastroschisis, a condition that causes the intestines to develop outside the body. They also knew he would be in for a long struggle and need many surgeries. But they had a harder time coming to terms with the fact that the liquid feedings he was receiving through IV lines — what’s known as total parenteral nutrition — were keeping him alive and killing him at the same time. These feedings were the only way Charles could get nourishment, but they were harming his liver, as they do to 60% to 80% of babies who receive them. In Charles’s case, the damage was severe. “The transplant team from the hospital came to talk to us, and I wanted nothing to do with the transplant,” recalls Alyson. “I had been at the hospital long enough to see how kids who receive transplants suffer.”
But what was the alternative? Three years before Charles was born, a physician at the hospital, Mark Puder, M.D., had been trying to figure out why the feedings caused liver damage. All his results pointed to the type of fat in the formula. Few of his colleagues believed that could be the case, but Charles’s physician was one of them. “Charles’s doctor asked me to ‘save his baby.’ I told the Rolfes that if Charles was given a formula that contained more omega-3 fatty acids than the one he was receiving, he might improve, but he also could remain the same or even die,” says Dr. Puder, who needed special approval from the government to use the experimental formula.
With Charles’s health declining daily, the couple took the chance — and the government approval came through. After a week, there were signs that it was working. After a month, his liver began functioning normally. Since then, Dr. Puder has treated 29 other infants with the omega-3 formula; two have died of unrelated conditions and the rest have improved. Says Dr. Puder: “The nurses on the floor thanked me that they don’t have to go to as many funerals anymore.”
3. Children’s Healthcare of Atlanta
Current Research Studies: 668Cutting-Edge Treatments: Established the Center for Pediatric Outcomes and Quality to study practices that may reduce medical errors and determine which treatments for specific conditions are most effective in children; designed a cushion-like device to simulate crawling and build upper-body strength in infants with spina bifida and other conditions that impede motor skills; and is refining a gene therapy that may in the next decade cure hemophilia A, a disorder that can cause internal bleeding with the slightest bump.
Compassionate Care: Provides a floor-wide party for a patient’s birthday; pet-assisted therapy; a Mardi Gras costume party complete with fun floats (decorated red wagons); and massages for parents.
Community Focus: Gives training to school nurses; developed a physical-exam form to better identify high school athletes at risk for sudden death on the field from undiagnosed heart problems; joined with the state to boost immunization rates in Atlanta; and successfully lobbied for a state law to ban smoking.
Fifteen-year-old Jennifer Graham was pulling a rabbit out of a hat when James Tally, Ph.D., president and CEO of Children’s Healthcare of Atlanta, first saw her. “She was entertaining the younger kids in the cancer ward with poise and charisma,” he said. “I asked her how long she’d been doing the magic show, and she told me she got the kit last night. That’s when I thought, ‘This kid really is magic.’”
Over the next year or so, Dr. Tally often went to visit Jennifer, who had leukemia, and talk to her family. But she summoned him the day she found out that her cancer couldn’t be cured: “She told me that she had been saving money for college by babysitting and working odd jobs, and that she wouldn’t need it anymore. She wanted to give the hospital her savings, and she wanted me to tell her how her donation could be used. She decided to use the money to redecorate a room in the nearby Ronald McDonald House.”
Since her death over a decade ago, the hospital has stepped up its oncology research and now enrolls 91% of its eligible cancer patients in a study. Dr. Tally’s inspiration: “I look at Jennifer’s picture on my bookcase every day I come to work.”
4. Texas Children’s Hospital, Houston
Current Research studies: 795Cutting-Edge Treatments: Identified the entire series of genes responsible for an increasingly common strain of staph infections that are resistant to often-prescribed antibiotics, paving the way for the development of more targeted treatments; was selected as the only U.S. training center for the Berlin Heart, a mechanical device that may be implanted in children who are waiting for a heart transplant; and developed a technique to reduce the time it takes to perform one type of scoliosis surgery by more than an hour, thereby reducing complications.
Compassionate Care: Provides DVD players and video game systems in every patient room; a playground with a wheelchair-accessible swing; classes to prepare kids who have a sibling in the NICU; and teen and preteen playrooms.
Community Focus: Set up a pediatric clinic in the Astrodome, which in 12 days treated more than 3,000 children who were victims of Hurricane Katrina; established three “medical homes” in low-income sections of Houston where children can receive free checkups and immunizations and be registered for nominal- or no-cost health insurance; and trained 40 technicians to check car seats. They performed more than 2,700 inspections in 2005.
Eighteen months into Cody Pendley’s battle with a rare form of muscular dystrophy, he reached the lifetime cap on his health insurance. For Cody’s medical bills to be taken care of, his parents, Deedy and Michael, faced a harsh decision. “We could abandon our child and he would become a ward of the state, so we’d have no say in his care; we could get divorced, and Mike would care for our other kids and I could claim abandonment, making Cody eligible for Medicaid; or we could put Cody in a state-funded nursing home,” Deedy recalls.
For three days they agonized, and Deedy wouldn’t leave Cody’s room at Texas Children’s Hospital: “Even though his body didn’t work, his mind did, and Cody had definite preferences, like he loved Elvis tunes and hated country music,” says Deedy. “He was a sweet-natured, happy child I absolutely adored.” Just as the couple was making plans to liquidate a small retirement account and sell one of their cars—a move that may have bought them another couple of months — a financial counselor from the hospital stepped in. “He told me that the hospital’s charity committee would cover Cody’s bills for the rest of his life,” recalls Deedy. “We were able to care for him at home, and I even got some nursing help, until he passed away surrounded by our family and friends when he was 4 years old.”
In the midst of Cody’s care the hospital gave her another gift, she says: “In conjunction with Baylor College of Medicine, Texas Children’s finished mapping the human genome, and now doctors are able to tell what gene defect was responsible for Cody’s condition and whether my other children are carriers. They’re going to be tested when they’re older,” she says.
5. Cincinnati Children’s Hospital Medical Center
Current Research studies: 1,076Cutting-Edge Treatments: Analyzes genetic codes to determine which seizure medication is best suited to an individual child; reduced the rate of hospital-acquired infections in babies on a ventilator more than sixfold from 2004 to the first seven months of 2006; and identified a protein that could be used to predict whether patients receiving kidney transplants need dialysis within the first week of surgery.
Compassionate Care: Provides knitting, scrapbooking, and ice cream socials for families; a clinical concierge nurse to coordinate outpatient appointments to multiple departments; and the largest palliative care program in our survey, caring for 600 kids in 2005.
Community Focus: Has established a comprehensive weight-management program for kids as young as age 5; improved the percentage of children with chronic illness who receive a flu shot from 17% in the 1999–2000 season to more than 60% four years later; and runs the Psychiatric Intake Response Center to quickly link at-risk children to mental health services.
When Amy and Dan Witzigreuter learned that their newborn son, Paul, needed a liver transplant because he had a rare congenital condition that blocked the flow of bile from his liver to his gallbladder, causing rapid scarring of the organ, the family was at their local children’s hospital. “The doctors didn’t have a set time every day when they did rounds, so you couldn’t plan to be there, and when a physician would order a medication it commonly took hours to be added to the treatment plan. We were fed up,” says Amy.
Then the couple did some research of their own and found out that Cincinnati Children’s Hospital Medical Center performs about 24 pediatric liver transplants every year and that nearly 90% of the patients undergoing the procedure are still alive three years later. Surgeons gave Paul part of Amy’s liver when he was 7 months old and he’s doing well now. “They took great care of Paul, and they also took great care of my older kids,” she says, “helping them create books and pictures to express their feelings.”
6 Columbus Children’s Hospital, OH
Current Research Studies: 655Cutting-Edge Treatments: Was the first U.S. hospital to use gene therapy to treat a child with a form of muscular dystrophy; is working on a vaccine to prevent ear infections; and is home to the Center for Injury Research and Policy, a program that identifies causes of injury-related deaths and disabilities in kids and offers practical suggestions for preventing children from getting hurt.
Compassionate Care: Provides sleeping accommodations for parents in 93% of patients’ rooms; a supervised sibling clubhouse for brothers and sisters of patients; an expanded family resource center with laundry, fitness, and kitchen facilities; and plush dolls for children having an interventional procedure in the ER.
Community Focus: Offers a child-abuse prevention and treatment program; successfully lobbied for state legislation that allows moms to breastfeed in public; and offers free smoking- cessation classes for teens.
Last January around 6 p.m., doctors walked into 3-month-old Jason Wolfe’s room in the transplant unit of Columbus Children’s Hospital to talk to his parents, Michael and Maria. It was Friday the 13th, and despite the date’s reputation for being unlucky, doctors told the couple they had found a donor heart and lungs for their son, who just after Christmas had been diagnosed with a severe case of primary pulmonary hypertension—a condition that prevents a normal amount of blood from flowing into the lungs and caused Jason to crash more than a half-dozen times in the two weeks prior. But there was one more detail the doctors still had to mention.
Across the hall from Jason was 2-month-old Kayla Richardson, who was diagnosed at birth with a congenital heart defect and required a heart transplant. Both families had met each other in the hallway — they had even talked briefly—but on this day they would be tied together forever. Says Maria: “The doctors asked us if we’d be willing to donate Jason’s heart, which was only being replaced because it’s much more difficult to transplant lungs alone in a small infant, to a little girl in the hospital.”
The little girl, the Wolfes immediately realized, was Kayla. “The doctors weren’t finished asking the question before my husband and I were nodding yes,” she recalls. And so, a “domino” transplant — the only one attempted in the U.S. in the last 10 years — was performed. First, a team of doctors removed Jason’s heart and lungs and replaced them with the new organs. And then Kayla received Jason’s heart. Kayla is doing well, the hospital reports. “Jason has exceeded all expectations,” says Maria. “He’s shown no signs of infection or rejection. He crawled at 9 months and is going to start walking any day now.”
7. St. Louis Children’s Hospital
Current Research Studies: 405Cutting-Edge Treatments: Is home to the world’s largest pediatric lung-transplant program; helped discover that a deficiency of copper may cause birth defects, opening the door for women planning to conceive to be screened before pregnancy; and is one of a handful of pediatric centers in the nation with a program to surgically repair the eyesight of kids with special needs, such as children with cerebral palsy.
Compassionate Care: Has a rooftop garden with more than 7,000 plants and flowers, waterfalls, and two ponds filled with goldfish; music, art, and horticultural therapists; a newly designed NICU featuring private rooms with bedside sleeping accommodations for parents; game shows for patients to play via the hospital’s closed-circuit TV station; and free meals for mothers who are breastfeeding.
Community Focus: Constructed 32 new playgrounds throughout the city; advocated for the recently passed state legislation requiring the use of booster seats from the time children outgrow their toddler car seat to age 8; and piloted an innovative program in three of the city’s public schools that reduces absences due to asthma by as much as 30%.
The pain in Jenny Steinmann’s hip started inconspicuously enough: “I was in eighth grade when I got a dull ache, but as soon as I would take ibuprofen, it would go away,” she says. “I didn’t think it was anything serious.” Her parents didn’t think it was anything serious either — and her pediatrician attributed the ache to a pinched nerve or pulled muscle. But the pain persisted, and a few months later Jenny got her hip X-rayed. “The bone looked all marbled, and the doctor said he’d need a biopsy to determine whether it was one of two different types of cancer or one of two different kinds of bone disorders. I thought it was a bone disorder,” she says.
It wasn’t. She had Ewing’s sarcoma, a rare and particularly lethal form of bone cancer. And further tests showed that cancerous cells had spread to 12 sites, including her vertebrae, femur, and skull. “While my mom didn’t want to leave my side, my dad was at the library, researching whether we should fly to another hospital,” she says. He concluded that St. Louis Children’s Hospital, less than 30 minutes from the family’s home, had the know-how and the resources to cure her.
Jenny’s course was aggressive: She went through 10 months of chemotherapy and six weeks of radiation, then received a stem cell transplant, in which her own stem cells were extracted and returned to her after extensive therapy. “My hip pain subsided a week into treatment,” she says. And after a year and a half of treatment, further tests didn’t detect any cancerous cells in her body. Jenny returns to the hospital every summer and winter for a checkup and for the last five years has received a clean bill of health.
8. Rainbow Babies & Children’s Hospital, Cleveland
Current Research Studies: 169Cutting-Edge Treatments: Develops techniques and designs equipment for minimally invasive neurosurgery for brain tumors, reducing recovery time and increasing safety; was awarded the highest designation in the care of epilepsy from the National Association of Epilepsy Centers; and co-founded the world’s only school focusing on providing safer alternatives to pediatric blood transfusions.
Compassionate Care: Provides a session with a psychologist and social worker for every cancer patient; a mental health care program for parents with babies in the NICU; and an outdoor playground with giant flower canopies for shade.
Community Focus: Launched the Children Who Witness Violence program to break the cycle of domestic violence often learned in the home; promotes the safe storage of firearms in homes and distributes free trigger locks; and trained 24 technicians to check car seats and gave a refresher course to another 71 in 2005.
Rhiannon Kerkel, Shari and Michael’s newborn daughter, was rushed to Rainbow Babies & Children’s Hospital because the facility where the baby was born didn’t have an NICU. (See page 86.) Moments after her arrival, Rainbow’s doctors called her parents to assure them their baby was still alive and was likely suffering from hypoxic-ischemic encephalopathy, a condition that often occurs when the brain fails to receive enough oxygen either in the hours leading up to birth or during labor and delivery.
The physicians asked permission to enroll Rhiannon in a study examining whether a blanket that cools a baby’s body temperature by a few degrees would reduce the risk of death or the degree of brain damage in infants with this condition. About a year after their daughter was cooled with the blanket, the published results of the study conducted on 208 babies from the nation’s 16 centers that are part of a government-funded neonatal research network were compelling: 24 of the 104 infants cooled with the blanket died, compared to 38 who received the standard treatment, and 44% of the “cool kids” suffered from a moderate to severe disability, compared to 68% of those babies whose temperature wasn’t lowered.
As for Rhiannon, now 2, there’s barely any reminder about her rocky start in life. She loves going to the playground, takes classes at The Little Gym, and as her mother puts it, “has an intimate relationship with Blue’s Clues.” Adds Michael: “Even if she couldn’t do these things, I just love to hear her laugh.”
9. Children’s Hospital of Wisconsin, Milwaukee
Current Research Studies: 753
Cutting-Edge Treatments: Administers a long-acting injection of insulin so some children newly diagnosed with diabetes can be treated in the hospital’s outpatient clinic rather than be admitted; has received national acclaim for rabies treatment and research; and at press time, planned to open a state-of-the-art research facility in January to study important pediatric conditions including middle-ear infections, kidney disease, and hemophilia.
Compassionate Care: Provides a visiting artists program, which includes creative projects that patients receive help making; a sibling day every year for brothers and sisters of cancer and transplant patients; an on-site dry-cleaning service for families; and custom-designed freezers in the NICU to allow the storage of breast milk for a long period of time.
Community Focus: Teaches an injury-prevention class for preschools and kindergartens; offers a weight-management program for local children; and distributed 1,000 free bike helmets at area events in 2005.
Just a few nights after Kailee Wells celebrated her fifth birthday, she woke up with her pajamas covered in blood. Practically out of the blue, she was vomiting clots; the only previous sign of trouble was a fever and headache she had developed earlier in the week.
Her symptoms concerned doctors enough that they admitted her to the intensive care unit and put her bone marrow under a microscope. “The doctor came in and told my husband and me, ‘The good thing is that it’s not leukemia and the bad thing is that it’s something worse—severe aplastic anemia,’” says her mom, Linda.
Kailee’s body practically stopped making cells that carry oxygen, fight infection, and control bleeding. She immediately received a blood transfusion and intravenous medication. “But she steadily grew worse, and my husband and I learned that Kailee was the only patient with severe aplastic anemia ever treated at our local hospital,” says Linda. “We knew that we couldn’t stay.”
Research sent the family, who lived in Albuquerque, to Children’s Hospital of Wisconsin, a pioneer in the field. It has one of the largest programs in the country for performing bone marrow transplants with unrelated donors to treat severe aplastic anemia. While getting bone marrow from a sibling is ideal, Kailee doesn’t have one, at least one her family could find. The Wellses had adopted her from a Chinese orphanage, whose officials told them that the baby had been abandoned on the steps of a teachers’ institute.
The Wellses moved to Milwaukee, and they and the hospital embarked on a worldwide search for a donor who was Asian — because that would provide the most likely chance of a match. In November 2005, just one day before the family was to leave for China to implore residents to get their marrow tested, a perfect match came through, from a man who heard about Kailee in the news during Linda’s last visit to the country. The hospital’s translator arranged with Chinese health officials to send a courier to fly back with the lifesaving marrow, and Kailee received the transplant. A couple of weeks later, her blood counts started to rise, and she has improved gradually ever since. Says Linda: “By next year, she should be able to fend off infections well enough to meet the man who saved her life.”
10. The Children’s Hospital in Denver
Current Research Studies: 643
Cutting-Edge Treatments: Is boosting the survival rates for high-grade glioma, a rapidly growing cancerous brain tumor, by infusing chemotherapy during radiation; led a study among several children’s hospitals that found that inhaled-nitric-oxide therapy can halve the risk of chronic lung disease in premature babies with respiratory failure who weigh between 21/4 and 23/4 pounds; and received commendations from the National Cancer Institute for increasing young children’s access to experimental studies.
Compassionate Care: Provides yoga therapy for cancer patients; teen karaoke nights; a patient art gallery; an outdoor playground with a padded floor; and camps for siblings of patients.
Community Focus: Offers a nationally renowned weight-management program for kids; lends specially designed car seats to families whose kids have a cast; and sponsors clinics to distribute free flu vaccines.
Lauren Lewakowski, 16, and her dad biked 54 miles through the mountains of Colorado during a charity race in July 2005. Lewakowski didn’t care how long it took her to finish — the fact that she was cycling at all was a huge victory. She was born with a condition in which the ball of her hip was impinging on her socket, and from age 8 until about a year before the race, she was in pain. “It had gotten so bad that she couldn’t climb the stairs to her bedroom without crying,” says her mom, Cathy Lee, who underwent hip replacement at age 36 for the same condition.
Hoping to spare her daughter from a fate like her own, she scheduled an appointment for Lauren with Ernest Sink, M.D., at The Children’s Hospital, Denver. He’s one of a handful of doctors in the nation with experience performing periacetabular osteotomy, a complex surgery that rotates the hip socket so it better covers the ball joint. Just two months after the operation on her right hip, she hiked up a 14,000-foot mountain; three months after that she went snowboarding. The operation improved her life so much that she’s scheduled surgery for her left hip. Says her mom: “Imagine what she’ll be doing then.”
Excerpted from Child magazine. To read the complete article, including the top specialty hospitals for children,