When a Child Truly Needs the Best
No, getting the right care at the right place isn't easy. Yes, you can make it happen
That wasn't the case for Yana. After surgery, she had to be treated at Shriners Hospital for Children in Boston. She suffered third-degree burns—the most severe kind—on her knees from friction while in traction for days, her legs held straight and hips bent at a 90-degree angle. Yana's current exstrophy team at Johns Hopkins Hospital in Baltimore noted in a letter to Yana's pediatrician (who is not a part of the hospital system where the injury occurred) that Hopkins never uses such an approach following surgery.
How did this happen? The Herzogs took copious notes throughout Yana's hospital stay, questioned her caregivers, and repeatedly called attention to her traction wounds. What most haunts Herzog is that Yana's surgeon went on vacation for over a week two days after her major surgery. Yana has proved amazingly resilient and is an active preschooler, but Herzog and her husband still grapple with anger and guilt. "You want to believe the medical team is doing the best they can," she says, but parents' participation is still critical. "Don't be afraid to speak up," she cautions, or to remove your child if things go wrong.
Sheer emotional exhaustion can inhibit the most well-intentioned parents. Resources outside the hospital often do exist, but digging them up (or enlisting a friend or family member with more energy) is the trick, says Putkowski of NORD. Most major pharmaceutical companies, for example, offer breaks on the cost of expensive prescription drugs, even if a child is insured. Local pharmacists should know about such assistance programs.
"Annoyance campaign." Tackling insurance companies to OK out-of-network care and unapproved treatments is another hurdle well worth the challenge. "We encourage people to take on their insurance companies," says Putkowski, who worked for one and says there is more leeway than parents may think. NORD offers template letters to launch the appeals process—including one for filing a formal complaint with the state insurance commission. The push to get coverage, she says, is a letter-writing, telephone, and E-mail "annoyance campaign."
It's one that can succeed with public programs, too. Kim Arnold, a Dallas mother of premature triplets now 4 years old, has spent uncountable hours, many of them spent weeping in frustration, in the local Medicaid office. With guidance from other parents and from social workers in her sons' doctors' offices, the Arnolds persisted and got a precious waiver of existing rules to cover the nonstop trips to the hospital and appointments with specialists for the boys. Her advice to parents struggling under the weight of bureaucracy and medical bills is simple: "Don't give up."
Help can come from unexpected sources. Single father Joe Vettori was able to seek a neurology consultation at Children's Hospital Boston for 4-year-old Kaylee, born with agenesis of the corpus callosum (the fibrous band between the two halves of her brain hadn't developed), because the two flew free from a small airport near their home in Lima, Ohio. All it took was his word that otherwise the travel would be unaffordable, and the National Patient Travel Center arranged an "Angel Flight." "I never thought such a thing existed," says Vettori. Kaylee's grandmother found the service—through a patient group.
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