It’s not uncommon for a child with Down Syndrome to receive regular care from as many as six or seven specialists. The new Down Syndrome Center at St. Louis Children’s Hospital allows families to coordinate all these doctor visits into one trip.
St. Louis Children’s Hospital opens Down syndrome center
(Republished with permission from the St. Louis Post-Dispatch. This article originally ran in the South City Journal on January 26, 2005)
By Julie Randle
St. Louis Children’s Hospital recently opened a multi-disciplinary center that caters to the needs of children with Down syndrome.
Life before The Down Syndrome Center opened it doors was more complicated, time consuming and less efficient for patients and parents. Now, since the center opened Jan. 11 on the second floor of the Ambulatory Care Clinic, which is an outpatient facility, things will be more efficient, easier and simpler for physicians, parents and patients. Patients will be able to see all the medical professionals they need in one visit, which occurs on Tuesday mornings.
“I’m very aware that this is something that is needed,” said Dr. Kathy Grange, a medical geneticist with St. Louis Children’s Hospital and associate professor of pediatrics at Washington University School of Medicine. “We felt it was something needed for the families because they see multiple physicians and therapists.”
And Aysha Griffith couldn’t agree more.
“Working with kids who have disabilities can be a challenge. We need more insight on how to prepare our children for the future,” said Griffith, who belongs to several Down syndrome support groups and has an 8-year-old daughter with Down syndrome.
“I live in a small town. Our resources here are very limited,” said Griffith of Quincy, Ill. “I need answers.”
Griffith and her daughter, Daisy, will be making the two-and-a-half-hour commute – one way – on Feb. 22 to meet St. Louis Children’s Hospital physicians and specialists at the center.
“It’s exactly what I’ve been looking for,” said Griffith, who learned about the new center when she called the hospital for another request.
“The goal of the center is to optimize the quality of life for children with Down syndrome by offering this comprehensive individualized care,” Grange said.
Down syndrome patients range from those with complex problems to those who just need routine medical care – but more than most other children.
On a routine basis, children with Down syndrome see six to seven specialists because they suffer from multiple problems, which might include congenital heart defect, hearing loss, eye care issues, physical and occupational therapy needs and gastrointestinal complications. In addition, individuals diagnosed with the condition have mental retardation and developmental delays.
Down syndrome is diagnosed at birth or during prenatal testing. It is a genetic disorder caused by an extra number 21 chromosome. Typically, people have 46 chromosomes, where as people with Down syndrome have 47 chromosomes.
This center — the only type of its kind in St. Louis – was established and designed by Washington University School of Medicine and the Down Syndrome Association (DSA) “to help families coordinate care for children so they can see multiple specialists on that day and get the care they need,” Grange said.
From the onset of planning, which began about a year ago, the DSA was involved in every aspect.
“They were instrumental in helping provide opinions in what was needed in the organization of the clinic,” Grange said.
The team-care approach gives all medical personnel a better understanding of what a child needs.
“Everyone I talked to has been excited and feel this is needed,” Grange said. “We have been positively encouraged by other physicians.”
A pediatric nurse practitioner will coordinate the plan of care and organize what specialists each patient needs to see based on his or her information. The process to learn more about each patient will be done over the telephone or in person. In addition, a developmental pediatrician will help assess each patient’s development.
In a single day, a patient visiting the center will have access to medical professionals in genetics and genetic counseling, cardiology, ear, nose and throat, ophthalmology, developmental pediatrics, audiology, physical and speech therapy, social work and dietary and nutrition services.
“Our goal is to be a medial name for children with Down syndrome,” Grange said. “We’re hoping to help the children reach their fullest potential.”
For more information, call (314) 454-6093 or visit www.stlouischildrens.org and click on The Down Syndrome Center.
Copyright 2005 St. Louis Post-Dispatch, Inc.