March 21 is World Down Syndrome Day

Blog provided by the Genetics Section at The Children’s Hospital of San Antonio:
Dr. Elizabeth Roeder
Dr. Scott McLean 
Rebecca Littlejohn, MS, CGC
Kimberly Nugent, MS, CGC

Did you know that one in 700 babies has Down syndrome, also called trisomy 21? This means about 6,000 babies with Down syndrome are born in the United States every year. Down syndrome is caused by having three copies of the 21st chromosome rather than two copies. That is why the date March 21 (3-21) was selected for World Down Syndrome Day.

World Down Syndrome Day (WDSD) was first observed in 2006 and has been officially recognized by the United Nations since 2012. When we celebrate WDSD, we raise global awareness about what Down syndrome is, we encourage our friends and relatives to recognize WSDS, and we support those who advocate for the rights, inclusion and well-being of people with Down syndrome. Anyone can be an advocate for a friend or family member with Down syndrome, and raising awareness and sharing correct information is one way to do this. Celebrating WDSD is a great way to recognize the uniqueness and value of every person with Down syndrome in communities all over the world.

The Children’s Hospital of San Antonio has many doctors, nurses, and associates who care for children with Down syndrome and their families. Please join The Children’s Hospital of San Antonio in recognizing this special day!

Check out these local, national, and global websites about Down syndrome:
· http://www.dsastx.org/
· https://www.ndss.org/
· https://worlddownsyndromeday.org/
· https://lejeunefoundation.org/

If you need a physician specializing in Down syndrome or other genetic conditions, please visit our website at www.chofsa.org/findadoc.

5 steps to getting you and your medically fragile child home from the hospital

Complex Corner: This is the first in a series of blogs specifically written for parents of children who have complex conditions that require a variety of medical specialists.

By Ruchi Kaushik, MD, MPH
Assistant Professor, Pediatrics
Director, ComP-CaN (Comprehensive Peds for Complex Needs)
Baylor College of Medicine

Taking a newborn home from the hospital can be anxiety-provoking for most families, so taking a medically fragile infant or child home after being in the hospital for several weeks is obviously daunting.

Families meet a variety of doctors, nurses, physical/occupational/speech therapists, respiratory staff, case managers, and social workers – it is impossible to remember everyone’s names, much less what they just advised you to do before leaving the room.  That said, I often tell caregivers that hospital staff have done a superb job of saving a child’s life; our next task, as a team, is to prepare a child for school.  In simple terms, going home is one transition to a new normal, until the next transition.

Continue reading “5 steps to getting you and your medically fragile child home from the hospital”