Kiran Aurora, MEd
Program Coordinator, Down Syndrome Clinic at Barrow at Phoenix Children's
Down Syndrome Awareness Month
October is Down Syndrome Awareness Month, but what is it exactly that you are supposed to be aware of?
According to the Centers for Disease Control and Prevention, Down syndrome is a condition in which a person has an extra chromosome. Chromosomes are small “packages” of genes in the body. They determine how a baby’s body forms during pregnancy and how the baby’s body functions as it grows in the womb and after birth. Typically, a baby is born with 46 chromosomes. People with Down syndrome have an extra copy of one of these chromosomes: Chromosome 21. Down syndrome is also referred to as Trisomy 21. Even though people with Down syndrome might act and look similar, each person has different abilities.
There are many other things to know about Down syndrome, including:
- There are three types of Down syndrome:
- Standard Trisomy 21 (nondisjunction) accounts for 95 percent of cases
- Translocation accounts for 4 percent of cases
- Mosaicism accounts for 1 percent of cases
- About 6,000 babies born every year in the U.S. have with Down syndrome. That means that it occurs in about 1 of every 700 babies.
- Each year in Arizona, 161 babies are born with Down syndrome.
- The incidence of births of children with Down syndrome increases with the age of the mother. Because of higher fertility rates in younger women, 80 percent of children with Down syndrome are born to women under age 35.
- There are more than 40,000 people living with Down syndrome in the U.S.
- The life expectancy for people with Down syndrome has increased dramatically in recent decades, from 25 years old in 1983 to 60 years old today!
In 2013, the Pediatric Down Syndrome Clinic at Barrow Neurological Institute at Phoenix Children’s Hospital was established to support the family, ensure comprehensive care of the child and support the primary pediatrician caring for the child with Down syndrome. We are also the only Pediatric Down Syndrome Clinic in the Southwest! The clinic is led by co-directors, Robin Blitz, MD, director of developmental pediatrics and Amber Wright, a certified pediatric nurse practitioner.
The division of developmental pediatrics works with other divisions within the hospital to provide clinic patients with multidisciplinary care. In addition to developmental pediatrics, children seen in the clinic may be treated by genetics physical, occupational and speech therapy, neurology, neurosurgery, cardiology, endocrinology, gastroenterology, opthalmology, psychiatry and pulmonology.
We also work with great partner organizations that provide community support to children with Down syndrome and their families, like DS Network, Sharing Down Syndrome and Global Down Syndrome Foundation, which has provided our clinic with grants to provide patients and parents with support services.
One of the main message we in the Down Syndrome Clinic strongly support and advocate for is to use People-First Language. What is People-First Language? It's a way of speaking that respectfully puts the person before the disability. That means when speaking to and about people with Down syndrome, the language used should be, "He has Down syndrome," rather than saying, "He's Down's." Remember: Down syndrome and similar disabilities are simply medical diagnoses and don't define the people who have the conditions! Learn more about People-First Language.
On a final note, if you've ever visited our Down syndrome clinic, you've probably met Julia Banahan, a young adult with Down syndrome and volunteer with Phoenix Children's Hospital who has been working with us in the clinic for almost two years. She's an amazing young lady who is dedicated to helping other patients and families. Read her inspiring story in Raising Arizona Kids!