February 27, 2010 2:01 PM
Down syndrome - one mom's story
When Traci wrote to thank Maddy for her positive message about Down syndrome on American Idol, she shared a bit about her son with Down syndrome and I asked if I could share it here:
Hi Barbara,Below is small glimpse of our story...
On December 16th 2008, I gave birth to my second son, Nicholas Asher (his name was chosen before birth) at Christiana Hospital in Newark, DE. We were surprised to learn he was diagnosed with Trisomy 21, Down syndrome. We had entered a whole new world of medical terminology, additional doctor visits, interviewing hospitals and surgeons for his upcoming open-heart surgery and yet through it all...we also learned a new capacity of love. My husband, Steve, myself and our 4-year old son, Jacob, had our own hearts captivated by this precious angel that, now, completed our family. He is also living proof of his chosen name, Asher. According to Genesis 30:13; Joshua 7:17; Judges 1:31,32; and Luke 2:36 his name means, "happy, blessed."
On Nicholas' two-month birthday we drove to Children's Hospital in Philadelphia and handed him over to the very skilled hands of a leading anesthesiologist who would then lay him on a table for Dr. Tom Spray (top heart surgeon in the country) to repair an AV Canal defect. (Atrioventricular (AV) canal defect is a large hole in the center of the heart. It's located where the wall (septum) between the upper chambers (atria) joins the wall between the lower chambers (ventricles)). After a little more than a week in the hospital we were able to bring Nicholas home...what a great and joyous day!
After spending that time in the hospital and meeting so many parents of children who were awaiting a heart and realizing our situation was rather simple...fix the heart and go home...simple! I cannot imagine spending months in the hospital environment knowing that one child must die so that mine may receive the heart needed to live. Hospitals are filled with stories far greater than one can imagine, yet through it all, it is a place full of love, a place of joy and a place of hope.
In December 2009, Nicholas was again driven to CHOP for an additional surgery. Although this time it was not on his heart, it was surgery nonetheless. He was "worked on" by multiple surgeons to remove the tonsils and adenoids, place tubes in his ears, an orchiopexy (surgery to bring down an undescended testicle) was performed, a hernia repair and a circumcision repair was done. Again, through this process we were humbly reminded that we were so lucky...so many stories, so many children.
Nicholas is now one year old and has already changed the lives a hundreds of people and continues to do so today. His heart is working great, thanks to Dr. Tom Spray and his staff at Children's Hospital of Philadelphia. We are a very blessed and very loved family by all. We are the new definition of a "special family."
My prayer is that all mothers find this happiness within each of their children, no matter the diagnosis.
blessings,
Traci LaGanke
Y'all are welcome to send me your own stories for publication. And please check out my 2008 Mother's Day album for 110 pictures of moms with their Little Extras!
Posted in Down syndrome | Permalink
Comments
I am really enjoying these stories, Barbara...You are right, they really do take away fears of down syndrome.
Posted by: Lisa | February 27, 2010 5:35 PM
