7. St. Louis Children’s Hospital
Current Research Studies: 405
Cutting-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: 169
Cutting-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.”

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