Anyone living in the U.S. likely has a story about the first time they became aware of a gap in healthcare. A lack of continuity that led to a frustrating visit to the emergency department, perhaps, or a mistake that led to the injury of a parent staying in a long-term care facility.
For Raylene Dickinson of San Diego, that moment came when she took custody of her eighth grandchild, Wyatt Lucio-Medina.
Now 27 months old, Wyatt was released to Dickinson from the hospital due to his mother's personal health issues. At 2 weeks, he was diagnosed with Down syndrome (DS).
Dickinson was referred to several local support groups that helped her educate herself about DS and Wyatt's health needs. But within the local healthcare community, she still found a lack of consistent resources for patients with DS and their families.
"There was no real place to go, and even the physicians did not necessarily know all the information they needed to know," she said. "For example, I actually printed out the current guidelines for kids with Down syndrome and gave them to my pediatrician.
"It's not that they do not know how to treat kids," she continued. "They do. But a pediatrician might have only one other kid with DS, and that child might be a teenager, so he hasn't gone through all of the things involved with a [DS] child before."
Now, thanks to a truly grassroots effort launched by the experiences of Dickinson and other families, the San Diego area has a new resource to bring multidisciplinary care to patients with DS.
January marked the opening of a pediatric Down syndrome center at Rady Children's Hospital in San Diego, the only comprehensive, multidisciplinary clinic of its kind in Southern California. DS Action, a San Diego-based nonprofit advocacy group, helped create the center.
Answering the Need
Lynne Bird, MD, specialty care physician at Rady Children's Hospital, serves as the new center's medical director. A specialist in genetics and dysmorphology, she acknowledged parents were the driving force behind the clinic's inception.
"It's a place where they can come and get comprehensive care that's state of the art and adheres to accepted guidelines," she said. "The fact that a group of parents helped set up this center speaks to the need for such a resource in the community."
In a policy statement established by the American Academy of Pediatricians (AAP) (http://aappolicy.aappublications.org), guidelines are available regarding the health supervision of children with DS, Bird explained. They include diagnostic criteria and timelines - from the prenatal visit to early adulthood - that guide clinicians in addressing the myriad issues affecting children with DS.
"It seems like a relatively easy thing to do, but apparently primary care physicians are not always aware of the guidelines or following them," Bird said.
Debbie Childs-Alston, BSN, RN, has been a nurse for 27 years, serving various roles in a variety of clinical settings. She works closely with Bird and the multidisciplinary team at the center to ensure a continuum of care for patients and their families.
"I think there is a variety of knowledge bases out there, but you still hear about families that get misinformation or different information than perhaps you would have wanted them provided with," she said. "Patients also come in with information from the Web or a variety of sources; it's not necessarily coming from their primary care providers.
"Ultimately, we want patients to benefit from a team that is up-to-date and familiar with the many facets of Down syndrome."